Long Term Care in Europe A Juridical Approach PDF

Ulrich
Becker · Hans-Joachim Reinhard
Editors
Long-Term
Care in
Europe
A Juridical Approach
Long-Term Care in Europe
Ulrich Becker • Hans-Joachim Reinhard
Editors
Long-Term Care in Europe

A Juridical Approach
Editors
Ulrich Becker Hans-Joachim Reinhard
Max Planck Institute for Social Law Fulda University of Applied Sciences
and Social Policy Fulda, Germany
Munich, Germany
ISBN 978-3-319-70080-9 ISBN 978-3-319-70081-6 (eBook)

https://doi.org/10.1007/978-3-319-70081-6
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Preface
Long-term care is the most recent branch of social security. It does not form part of
ILO Convention No. 102 on Social Security (Minimum Standards) which addresses
the traditional field of social security—at least not as a specific social risk. Yet, it is
gaining more and more importance in today’s social policy and social law due to
socio-demographic changes and technical-medical progress as described in many
studies. Although the challenge is the same for all European countries, different
approaches to social protection for dependent persons have been developed, and the
respective national legislations vary greatly.
Within most national jurisdictions, we can observe a situation of inconsistency
which is obviously due to an ongoing, only recently started process of institution
building. This leads to major problems: the overlap between different national
social protection schemes is a cause of inefficiencies and may even cause losses
of social rights. Furthermore, the widespread lack of legal coordination not only
forms an obstacle to the free movement of dependent persons within the European
Union but also impedes the cross-border provision of care services.
We are of the opinion that in this situation, a legal analysis is helpful in order to
gain a broad overview, to identify shortcomings and problems and to develop
proposals for possible solutions. The aim of this book is to investigate the legal
background, the normative guidelines, the legal instruments and the jurisprudence
of long-term care in Europe. The study includes a wide range of European country
studies from different parts of the continent and from different ‘jurisdictional
families’ with different types of social benefits and different ‘social models’. This
enables a legal comparison which highlights the principal dissimilarities between
European long-term care benefits schemes but at the same time also illustrates the
various features that the benefits have in common.
v
vi Preface
Our special thanks are due to the authors of the country reports, in particular for
their fruitful cooperation and their great patience. We are equally indebted to
Christina McAllister for translations and proofreading. Last but not least, we
would like to thank the European Commission for the financial support of this
publication.1
Munich, Germany Ulrich Becker

Fulda, Germany Hans-Joachim Reinhard
February 2018
1
Social Protection Investment in Long-Term Care (HORIZON 2020 Grant Agreement No 649565)
[Sprint].
Contents
Long Term Care in Europe: An Introduction . . . . . . . . . . . . . . . . . . . . 1

Ulrich Becker
Benefit Structures for Persons Dependent on Long-Term Care
in Austria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Walter J. Pfeil
The Czech Republic: No Promised Land for Carers and Persons
Dependent on Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
Kristina Koldinská and Martin Štefko
Long-Term Care Benefits under the French Social Protection System . . . 93
Otto Kaufmann
Long-Term Care in Germany . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121
Hans-Joachim Reinhard
Long Term Care in Hungary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177
József Hajdú and Dóra Lajkó
Long-Term Care Benefits and Services in Italy . . . . . . . . . . . . . . . . . . . 229
Eva Maria Hohnerlein
Long-Term Care in the Netherlands . . . . . . . . . . . . . . . . . . . . . . . . . . . 309
Tineke Dijkhoff
Long-Term Care Benefits and Services in Norway . . . . . . . . . . . . . . . . . 353
Sebastian Weber
The Legal Position of Persons Dependent on Long-Term Care
in the Republic of Poland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 381
Ariel Przybyłowicz
Legal Aspects of Long-Term Care in Slovenia . . . . . . . . . . . . . . . . . . . . 415
Grega Strban
vii
viii Contents
Social Protection Against the Risk of Long-Term Care Dependency

in Spain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 461
Long-Term Care Benefits and Services in Sweden . . . . . . . . . . . . . . . . . 495
Sebastian Weber
Social Security and Long-Term Care Dependency in Switzerland . . . . . 531
Iren Bischofberger and Hardy Landolt
Comparison . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 579
Contributors
Prof. Dr. Ulrich Becker Max-Planck-Institute for Social Law and Social Policy,
Munich, Germany
Prof. Dr. Iren Bischofberger MScN, MSc Kalaidos University of Applied Sci-
ences, Zurich, Switzerland
mr. dr. Tineke Dijkhoff Utrecht University, Netherlands
Prof. Dr. József Hajdú University of Szeged, Hungary
Dr. Eva Maria Hohnerlein Max-Planck-Institute for Social Law and Social
Policy, Munich, Germany
Dr. habil. Otto Kaufmann Max-Planck-Institute for Social Law and Social
Policy, Munich, Germany
JUDr. Kristina Koldinská, PhD Charles University Prague, Czechia
Dr. Dorá Lajká University of Szeged, Hungary
Prof. Dr. iur. Hardy Landolt LLM Centre of Competence for Law on Long-
Term Care, Switzerland
Univ.-Prof. Dr. Walter J. Pfeil University of Salzburg, Austria
Dr. Ariel Przybyłowicz University of Wrocław, Poland
Prof. Dr. Hans-Joachim Reinhard Fulda University of Applied Sciences,
Germany
JUDr. Martin Štefko, PhD Charles University Prague, Czechia
Prof. Dr. Grega Strban University of Ljubljana, Slovenia
Sebastian Weber Bender & Philipp Rechtsanwälte, Munich, Germany
ix
Long Term Care in Europe: An
Introduction
Ulrich Becker
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
2 Specificities of LTC Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
2.1 Care, Cure and Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
2.2 LTC Dependency as a New Social Risk? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
3 Organisation of LTC Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
3.1 Concept of Social Protection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
3.2 Systematisation of Social Protection Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
3.3 Mixed Systems and the Need for Coordination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
4 Provision of LTC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
4.1 Professional Care and the ‘Social Delivery Triangle’ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
4.2 Non-professional Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
4.3 Mixed Provision and the Need for Coordination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
5 On the Outline of the Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
1 Introduction
Long Term Care (LTC) has started to become an issue in modern social protection.
It means support for those who are not able to independently perform activities of
daily living (ADLs).1 Whereas this support has, even after the introduction of social
security in most developed states during the first half of the last century, remained
mainly a task of families and social institutions for a long time, more and more
states have, over the past decades, started to introduce social benefits for those
dependent on care. This is, first, due to the fact that the situation of many persons in
need for support calls for professional assistance. Second, there are fewer and fewer
1
See below, Sect. 2.1.
U. Becker (*)
Max-Planck-Institute for Social Law and Social Policy, Munich, Germany
e-mail: becker@mpisoc.mpg.de
© Springer International Publishing AG 2018 1

U. Becker, H.-J. Reinhard (eds.), Long-Term Care in Europe,
https://doi.org/10.1007/978-3-319-70081-6_1
2 U. Becker
persons who might be able to provide non-professional care, such as relatives and
neighbours, and fewer reliable social networks are formed that would suffice in
order to cover the social needs of dependent persons. The most relevant factor for
the growing involvement of public authorities is, third, the demographic develop-
ment. The populations of most developed states are growing older than ever due to a
rising life expectancy.2 This is a well-known and widely acknowledged develop-
ment which does not need further explanation at this point. It may, on the one hand,
be regarded as good news as it leads to an expansion of our life spans. Yet, medical
evidence seems to back the assumption that the growing life expectancy also has, on
the other hand, a negative side. Gerontologists tend to differentiate between ‘youn-
ger’ and ‘older’ elderlies. Wherever the borderline actually has to be drawn, ‘older
elderlies’ run a relatively high risk of becoming dependent on support, and this risk
seems to increase with biological age.3 Taking into account population ageing, it is
most presumable that our future societies will consist of a higher percentage of
dependent persons than today. A second demographic process has to be taken into
account. In many developed countries, the fertility rate is below what demographers
call the reproductivity rate.4 Of course, there are considerable differences between
the Member States of the European Union in this respect.5 But those with a low
fertility rate will encounter the problem that the number of persons prepared to
provide non-professional care will consistently decrease. At least, more efforts have
to be taken in order to stabilise the respective basis for non-professional LTC—
which is already weakened as changes in society and labour market participation
affect both the attitude towards non-professional care as well as the capacities for
making time for such caregiving.
These circumstances have in some countries led to the introduction of specific
social benefits schemes, in others to the reform of traditional systems—such as in
the Netherlands, where the costs of LTC are expected to become a major burden for
the public budget in the foreseeable future.6 And in all countries, the future
architecture and financing of LTC is under discussion.7 This book does not intend
2
The average life expectancy in the EU increased from 77.9 years in 2005 to 80.9 years in 2014.
Spain is at the top with a life expectancy of 83.3 years, while Latvia occupies last place with
merely 74.5 years. Life expectancy strongly varies between women and men. In 2014, it was for
women 83.6 years and for men 78.1 years in the EU which is an increase for both sexes compared
to 2005 when it was 80.9 years for woman and 74.8 years for men (http://ec.europa.eu/eurostat/de/
data/database).
3
See Baltes and Smith (2003), pp. 123 et seq. Whether or not this will lead to a decrease in
disability rates for the young old is disputed, see Jagger et al. (2011), pp. 7 et seq.
4
This rate of 2.1 children per woman remains unachieved in Europe. The average fertility rate of
the European Union adds up to 1.5 children per woman. The country with the highest fertility rate
is France with 1.96, the country with the lowest rate is Portugal with 1.31 children per woman
(http://ec.europa.eu/eurostat/de/data/database).
5
And the policy reactions are different; see for a legal comparison Becker et al. (2014).
6
See the chapter by T. Dijkhoff, this volume.
7
See Lipszyc et al. (2012).
Long Term Care in Europe: An Introduction 3
to take up these discussions as far as the economic aspects are concerned. It takes
them as a starting point illustrating the assumption that (1) states need to reorganise
the provision of support for those who are not able to perform the activities of daily
living, that (2) they have to choose between different types of social benefits
schemes in order to implement this provision, and (3) that they have to seek a
balance between their own responsibility for the well-being of those in need for
support on the one hand, and the respective societal responsibility on the other.
The last point concerns the actual provision, or delivery, of benefits. It deals with
the distinction between professional and non-professional care and the situation of
the respective caregivers, which is the crucial—yet often underestimated—point for
the functioning of LTC systems (below, Sect. 4). Before turning to this point, the
different types of social benefits systems which might be used for the organisation
of LTC will be described very briefly (below, Sect. 3). This is necessary in order to
gain an overview of the potential architecture of systems; and it is useful as various
types of systems are being applied in Europe; in fact, it is not uncommon for more
than one system being applied in a single country. Lastly, for the identification of
the respective benefits systems another step back has to be taken (below, Sect. 2). It
concerns the subject of respective benefits. Hence, the specificities of the different
LTC benefits shall be described first.
2 Specificities of LTC Benefits
2.1 Care, Cure and Disabilities
If a person is not or no longer able to independently perform the activities of daily

living (ADL) or, to put it simply, is helpless or dependent, the situation that has
arisen is rather complex. This may be due to various reasons: the person’s (bad)
state of health may be congenital, it may be the result of an accident or of severe
illness, or it may have been caused by a decline in the person’s capabilities or in
functional status due to ageing. And it can take on various forms. Exactly which
ADL are considered as relevant depends on appraisals and valuations. The question
has also been a topic for the newly established care (or nursing) science.8 In order to
answer it, the normative background has to be taken into account, in particular the
right to human dignity, life and integrity9; yet, a more concrete, generally applica-
ble legal definition does not exist. In a recommendation from 1989,10 the
8
E.g. Katz (1983), pp. 721 et seq. The debate has also led to more differentiation, especially with
the introduction of the term ‘Instrumental ADL’ (IADL), and it has emphasized the important role
of measurement, e.g. Wiener et al. (1990), pp. 229 et seq.
9
As laid down in Art. 1 to 3 of the EU Charter of Fundamental Rights (CFR).
10
No. R (98) 9 (https://wcd.coe.int/com.instranet.InstraServlet?command¼com.instranet.Cmd
BlobGet&InstranetImage¼532369&SecMode¼1&DocId¼486242&Usage¼2).
4 U. Becker
Committee of Ministers of the Council of Europe defined dependence as ‘a state in

which persons, by reason of lack or loss of physical, psychological or intellectual
autonomy, require significant assistance or help in carrying out their usual day-to-
day activities’; but it did not specify the precise nature of ‘usual day-to-day
activities’ or ADLs. Therefore, it is left to the national legislator to regulate the
specificities.11
Theoretically, care can be distinguished from cure. The latter comprises all
measures and medical appliances which are applied to treat a disease, and the
provision of which is a task of the health care systems. In practice, this distinction is
far from being clear-cut. First, the concept of illness is an open one which needs to
be put into more concrete terms. As in its core it also refers to functional deficits, the
main point which draws a line between cure and care lies in the meaning of
‘treatment’. Roughly speaking, “to cure” means to alter the state of health of a
patient (or at least to prevent it from becoming worse), whereas “to care” does not
carry the notion of producing such an effect. Even if one accepts this dissociation, a
second problem arises, as very often caring and curing measures overlap, influence
each other and sometimes are so deeply intertwined that they cannot be separated
from each other. This is the reason why some argue for an integrated system of care
and cure.
An even greater overlap can be observed with a view to the notions of depen-
dency and disability. The latter has been comparatively clearly defined by the
International Classification of Functioning, Disability and Health (ICF),12 as well
as by the UN Convention on the Rights of Persons with Disabilities of 2006,13
which has also been ratified by the EU.14 Art. 1 par. 2 of this Convention reads as
follows: ‘Persons with disabilities include those who have long-term physical,
mental, intellectual or sensory impairments which in interaction with various
barriers may hinder their full and effective participation in society on an equal
basis with others.’ In the light of this definition, a person who is not able to perform
ADLs may, at the same time, be a person with a disability, as it is highly probable
that a functional deficit impedes equal societal participation. Consequently, and as
far as social policy and social benefits are concerned, measures concerning disabil-
ities on the one hand and measures concerning dependency on the other can only be
distinguished from each other in terms of their specific functionality: whereas the
former aim to include persons with disabilities, the latter aim to provide support in
order to assist dependent persons with the performance of ADLs.
11
Which might be appropriate as the relevance of functional deficits very much depends on social
environment and cultural background.
12
Which serves as a WHO framework for measuring health and disability at both individual and
population levels and has replaced the previous International Classification of Impairments,
Disabilities and Handicaps (ICIDH); ICF is available at: http://www.who.int/classifications/icf/
en/.
13
Available at: http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf.
14
See Council Decision of 26/11/2009, OJ L 2010/23, p. 35.
2.2 LTC Dependency as a New Social Risk?
The traditional instrument for promoting social security on a global level is ILO
Convention No. 102 on Social Security (Minimum Standards) of 1952.15 It covers a
set of social risks and respective social benefits: health (medical care and sickness
benefit), maternity, unemployment, old age, employment injury, family, invalidity
and death (survivors’ benefit). The need for support with the performance of
activities of daily living is not mentioned therein. The same holds true for the EU
regulations on the coordination of social security systems.16 They were the first
legal acts on substantive matters of the former European Economic Community,17
and their drafting was inspired by the ILO approaches to international social
security. Thus, it is well understandable that the coordination regulations cover
the same set of social risks as ILO Convention No. 102: sickness, maternity and
paternity, accidents at work and occupational diseases, death, invalidity, old age
(old-age and survivors’ pensions), unemployment and family. This set of social
risks has remained unchanged over time,18 it can still be found in Regulation
883/2004 on the coordination of social security systems.19
Also in this respect, LTC may be described as a new social risk.20 It has not been
dealt with by the traditional legal instruments developed in the second half of the
twentieth century on the international level. It concerns specific situations of need
which overlap with already well-known social risks without being congruent with
them. And it has caused legislative reactions as new social benefits systems were set
up or, respectively, existing systems were extended in order to cover against the risk
of LTC dependency. These governmental responses to specific situations of need
clearly show the growing awareness of LTC as a social risk and the growing public
responsibility for addressing this risk.
As far as EU law is concerned, the ECJ has reacted to this new social risk by
extending the scope of application of the coordination regulations. In the Molenaar
case, the Court has interpreted ‘sickness benefits’ in a broad way, including all
benefits which are ‘designed to develop the independence of persons reliant on
care’.21 If LTC benefits are granted without discretion on a legal basis and therefore
15
Available at: http://www.ilo.org/dyn/normlex/en/f?p¼NORMLEXPUB:12100:0::NO:12100:
P12100_INSTRUMENT_ID:312247:NO.
16
Now based on Art. 48 of the Treaty on the Functioning of the European Union (TFEU).
17
Regulations No. 3 and 4 of 1958.
18
See also Regulation No. 1408/71 on the application of social security schemes to employed
persons, to self-employed persons and to members of their families moving within the Community
(OJ L 149/1971, p. 2).
19
OJ L 166/2004, p. 1.
20
See also Schulte (2013), pp. 207, 213.
21
ECJ of 5/3/1998, C-160/96 (Molenaar), par. 22 et seq.: ‘With regard to the second condition, it
appears from the file that care insurance benefits are designed to develop the independence of
persons reliant on care, in particular from the financial point of view. The system introduced is
aimed at encouraging prevention and rehabilitation in preference to care and at promoting home
6 U. Becker
have to be qualified as social security benefits,22 they fall under the scope of the
coordination regulations. This jurisprudence has led to the only provision of
Regulation 883/2004 dealing with LTC, Art. 34 on ‘overlapping long-term care
benefits’ which contains rules on the concurrence of benefits in cash and benefits in
kind for the same purpose.
It has to be noted that the approach of the ECJ towards an extension of social
risks covered by the coordination regulations cannot be used for the interpretation
of international treaties, as Art. 31 of the Vienna Convention on the Law of Treaties
does not allow a similar, dynamic interpretation. Thus, bi- or multilateral social
security agreements which include provisions on sickness benefits are not applica-
ble to LTC benefits if they do not make explicit reference to the latter benefits.23
3 Organisation of LTC Benefits
3.1 Concept of Social Protection
If the need for LTC can be qualified as a new social risk, it would be natural to come
to the conclusion that LTC benefits should be regarded as social benefits. This,
however, requires at least a few words of further explanation as the term ‘social
benefit’ is quite open and not often used, at least in English. The term more
commonly used would be ‘social security’. In its traditional meaning, this com-
prises benefits or systems set up to secure against the abovementioned social risks
that form part of ILO Convention No. 102.24 In other words, ‘social security
benefits’ mean benefits which aim at protecting the individual against specific
care in preference to care provided in hospital. Care insurance gives entitlement to full or partial
direct payment of certain expenditure entailed by the insured person’s reliance on care such as care
provided in the home, in specialised centres or hospitals, the purchase of equipment required by
insured persons, the carrying out of work in the home and the payment of monthly financial aid
allowing the insured to choose the method of assistance they prefer and, for example, to remu-
nerate in one form or another the third party assisting them. The care insurance scheme provides
cover, furthermore, against the risks of accident, old age and invalidity for some of those third
parties. Accordingly, benefits of that type are essentially intended to supplement sickness insurance
benefits to which they are, moreover, linked at the organisational level, in order to improve the state
of health and the quality of life of persons reliant on care. In those circumstances, even if they have
their own characteristics, such benefits must be regarded as ‘sickness benefits’ within the meaning
of Article 4(1)(a) of Regulation No 1408/71.’
22
See ECJ of 5/3/1998, C-160/96 (Molenaar), par. 20: “The Court has consistently stated that a
benefit may be regarded as a social security benefit in so far as it is granted, without any individual
and discretionary assessment of personal needs, to recipients on the basis of a legally defined
position and provided that it concerns one of the risks expressly listed in Article 4(1) of Regulation
No 1408/71”. See also ECJ of 10/10/1996, C-245/94 and C-312/94 (Hoever and Zachow), par. 18.
23
See for the German-Turkish Social Security Agreement of 1964 (revised in 1984) the judgement
of the German Federal Social Court of 25/2/2015, B 3 P 6/13 R.
24
See above, Sect. 2.2.
collective risks. And it means benefits which are granted on a legal basis in the form
of individual rights, and which do not depend on specific needs or administrative
discretion, as it has been pointed out in the context of the EU coordination
regulations.25
This definition leaves out social assistance, even though the respective, regularly
means-tested benefits appear to be well-established in the European welfare states.
As a consequence, two different solutions present themselves for the aim to use a
comprehensive concept. First, social security can be understood in a broader way
that also comprises social assistance. This solution has been put forward on
different occasions.26 Yet, it has the disadvantage that, against the background of
existing legal circumscriptions, it always requires clarification, as the concept is not
self-explanatory. Second, a new term can be used, a term with a broader meaning
which does not refer to a specific legal instrument or a specific organisational
structure of a benefit system. A term of this nature is ‘social law’, the use of
which is rather not advisable as it is mostly found in the German-speaking part of
the world.27 In an international context, and in particular in the European Union, the
most comprehensive term which seems to become more and more common in order
to describe governmental actions for specific social purposes is the term ‘social
protection’. Social protection is used as a political objective28 as well as a category
for the survey on existing national instruments.29 It covers risk-related benefits
systems, as well as other systems related to housing and to the fight against poverty.
Admittedly, the term remains somewhat blurred as it is being used in different
ways, especially as it sometimes comprises social inclusion,30 and sometimes does
not.31 What is still missing is a more systematic approach based on the specific
objectives and functions of benefits.
Despite of these shortcomings, the core of social protection measures lies in
administrative systems set up for the implementation of the relevant benefits.
Support for persons who are unable to perform activities of daily living is certainly
25
See above, Sect. 2.2 and footnote 22.
26
See for example General Comment No. 19 of the Committee on Economic, Social and Cultural
Rights on the Right to Social Security, http://tbinternet.ohchr.org/_layouts/treatybodyexternal/
Download.aspx?symbolno=E%2fC.12%2fGC%2f19&Lang=en. See also Becker and Pennings
(2013), pp. 1, 3.
27
See Zacher (1989), col. 59 et seq.
28
See most recently ‘Annual Growth Survey 2016 Strengthening the recovery and fostering
convergence’, COM(2015) 690 fin.
29
See Mutual Information System on Social Protection (http://www.missoc.org/MISSOC/index.
htm).
30
See the definition on the website of the EU Commission: ‘Social protection systems are designed
to provide protection against the risks and needs associated with: unemployment, parental respon-
sibilities, sickness and healthcare, invalidity, loss of a spouse or parent, old age, housing, and
social exclusion’ (http://ec.europa.eu/social/main.jsp?catId¼1063&langId¼en).
31
See for example ‘Europe 2020: A strategy for smart, sustainable and inclusive growth’, COM
(2010) 2020 fin.; also on the website of the EU Commission: ‘Social Protection & Social
Inclusion’ (http://ec.europa.eu/social/main.jsp?catId¼750).
8 U. Becker
to be considered as a benefit with a specific social objective—as this is also the case
with all benefits intended for the inclusion of persons with disablements and for
health protection measures. One point needs to be emphasised though: at least as far
as comparative research is concerned, we must not concentrate on public systems
only. Instead, we have to take into account that there are also private systems which
may pursue the same social objective and which are, in other words, functionally
equivalent to the public systems. Also in this regard, it needs to be mentioned once
more32 that the ‘continental distinction’33 between private and public law is getting
increasingly blurred. First, social security is a field of law which has a long-standing
history of cooperation between public and private actors. This also holds true for the
provision of benefits in kind, since physicians, hospitals and other providers are—in
most cases—contractual partners of the social security agencies. Thus, phenomena
conceived to be of very recent nature and pinned down by the terms ‘governance’
and ‘public private partnership’ have in fact been well-known in social law for
decades.34 Second, in all European countries, public social protection schemes are
supplemented by private schemes. The latter are sometimes traditional ones, like
occupational pension schemes, or they have recently been introduced in order to
react to demographic changes, as do some private pension plans. They may have a
complementary function, or may partly substitute public security, as is the case, for
example, with German LTC insurance.
3.2 Systematisation of Social Protection Systems
Social protection needs to be put into place by way of creating specific institutions.
Yet, actual establishment of these institutions and their respective configuration
does not simply depend on a specific purpose, or a specific social objective for that
matter. It rather depends on a whole set of different circumstances, including the
economic situation as well as the institutional and cultural preconditions inherent to
a society. Social protection law can be understood as an answer to certain social
deficits; yet, the answers given in response to those deficits may vary considerably.
This does not only apply to the level of social benefits. It also, and particularly,
applies to the architecture or the organisation of each social benefits system. The
choices made in this respect follow historical traditions and experiences (‘path
dependency’), and they are often led by political opportunities and based on
political compromises. But they do not go along with a rough socio-political
categorisation of social models35 nor along with the legal comparator’s
32
See already Becker (2010a), pp. 1, 14 et seq.
33
Cf. Allison (2004).
34
See also below, Sect. 4.1.
35
Esping-Andersen (1990). Although Esping-Andersen himself has brought about more
differentiation in the meantime, it still serves as a starting point for comparisons in social policy
research. See for a categorisation of European countries also Obinger et al. (2005), pp. 1, 23 et seq.
categorisation of so-called ‘legal families’.36 This is particularly reflected in health

care, the social protection system which is very close to LTC and is organised, even
within the European Union, along very different basic patterns or models: either as
a national health system, thus tax-financed and open to the entire population; or in
the form of social insurance which is often selective due to its contributory financial
basis. The lines between the various models are not always clear37 and partly
blurred.38
At least, the existing social protection benefits systems can, on the basis of a
systematic comparative analysis, be categorised according to their characteristic
features.39 A very prominent feature which allows a clear distinction between
systems concerns their financial sources, and this is mirrored in the differentiation
between security and assistance40 or insurance (‘provision’, ‘Vorsorge’,
‘previdenza’) and assistance.41 As insurance or ‘provisionary’ systems are financed
from contributions, the granting of benefits is based on specific preconditions; as a
consequence, these systems might be selective as far as personal coverage is
concerned, on the one hand. But, on the other, the payment of benefits is not
dependent on the financial situation of a person covered, and the amount of benefits
may rely on the amount of contributions,42 thus allowing for a differentiation
according to the individual standards of living.43
Within the category of tax-financed systems, a further distinction can be made
between the objective to avoid undesirable situations (especially as regards com-
batting poverty) and the objective to support persons in situations of specific needs
which may be understood as ‘desirable situations’ (support for families, education,
housing, but also measures for the inclusion of persons with disabilities and their
integration into labour markets). The payment of the respective benefits may be
subject to a means test, especially in terms of, yet not necessarily restricted to, a
response to ‘undesirable’ situations. Payment may also be unconditional, foremost
36
See for example David and Jauffret-Spinosi (2002). For other approaches for the
categorisation of jurisdictions and their significance in the context of social protection Becker
(2014), pp. 463, 479 et seq.
37
See, for the mixed health systems in Central and Eastern European countries Leienbach
(2000), pp. 49, 52, 56; Pitschas (2000), pp. 323, 333, 336.
38
Which also holds true for the mode of financing. The British NHS is partly financed from
contributions, whereas the French statutory health insurance receives money from a type of
contribution which is very similar to taxes (contribution social geńe´raliseé).
39
See Zacher (1987), pp. 571 et seq.; Becker (2010c), pp. 607 et seq.; for a different way of
structuring this field see Harris (2000), pp. 155 et seq.
40
41
See for example Art. 38 par. 2 (previdenza) und Art. 38 par. 1 (assistenza) of the Italian
constitution. For a similar distinction in Portugal Vergho (2010), pp. 47 et seq.
42
Even if not in the sense of the stricter principle of equivalency followed in private insurance law.
43
Both the selective character and the differentiated level of protection hold true for the Bismarck-
ian type of social insurance, whereas the Beveridgean type aims at ensuring a universal basic
coverage, based on flat-rate contributions and benefits.
10 U. Becker
depending on political decisions and societal valuations. A third sub-category

concerns compensation for damages caused by situations which appeal to a more
or less tangibly public responsibility (e.g. victims of crimes44 or of wars); the latter
category regards state liability in a broad sense and does not have to be taken into
account here.
3.3 Mixed Systems and the Need for Coordination
Over the last years, states have started to introduce specific benefits for LTC.
Germany has taken up its tradition as a social insurance country, establishing
LTC insurance in 199445 which came into force in 1995 and 1996.46 Using the
organisational structure of the existing health insurance, LTC insurance is based on
two different pillars: a so-called social insurance and a highly regulated and
functionally equivalent private insurance.47 LTC insurance is a child of its own
time and, to some extent, a mixture between the Bismarckian and the Beveridgean
social insurance model: it is aimed at covering the whole population, and is thus
more universal than traditional German social insurance schemes; and it only grants
flat-rate benefits - which do not cover the whole extent of needs of persons who are
not able to perform activities of daily living. This insurance approach has served as
a model in Japan48 which, in turn, had some influence in South Korea,49 but it is still
an exception in Europe. Most other countries have introduced tax-financed benefits.
And it is still rather the rule that different schemes are being used to supply LTC
benefits.
It follows from this situation that it is a very difficult task in nearly all states
involved to coordinate the different LTC benefits in an appropriate and efficient
way. This even holds true—at least until the most recent reforms will enter into
force in 201750—in Germany, where insurance and social assistance benefits
coexist side by side.
This need for coordination of the different benefits schemes is substantially
increased by the fact that considerable overlaps occur between LTC benefits,
sickness benefits and benefits for the inclusion of persons with disabilities.51 It is
nearly impossible to draw clear lines between these categories of social benefits,
44
See for the different objectives of respective benefits and different arguments for the establish-
ment of a ‘public responsibility’ Becker and K€ ortek (2010/2011), pp. 169, 171 et seq.
45
Pflege-Versicherungsgesetz of 26/5/1994 (BGBl. I pp. 1014, 2797).
46
With a differentiation between ambulatory and stationary benefits.
47
See the chapter by H.-J. Reinhard, this volume, for more details.
48
See for the development in Japan and Germany Matsumoto (2007), pp. 59 et seq.
49
See Sunwoo (2012), pp. 49 et seq.
50
Zweites Pflegestärkungsgesetz of 21/12/2015 (BGBl. I, p. 2424).
51
and in any case it is indispensable to match the different benefits in order for them to
accomplish their ultimate goal, that is to effectively support those who need
assistance with their daily activities. What makes this coordination so difficult in
practice is the fact that very often different administrative entities are involved. If
one takes into account that in many states the implementation of LTC benefits
causes problems as actors on different political levels are involved (e.g. central
government, regions or federal states, local communities), it must become obvious
that coordination is one of the major issues of properly working LTC systems.
4 Provision of LTC
4.1 Professional Care and the ‘Social Delivery Triangle’
Most professional LTC services that form an integral part of an LTC system are not
provided for by the competent authorities, be it a body of governmental adminis-
tration, an autonomous administrative body following the principle of self-
government (K€ orperschaften mit Selbstverwaltung) or a local community. Instead,
these authorities involve private actors for the purpose of benefits provision
(or delivery).
This model is being used for the sake of efficiency on the one hand, but it also
has a normative basis on the other as it leaves space for economic activities of
individuals. As already mentioned,52 this model is a very traditional one which has
been practised over decades. Thus, it is not a new element following postmodern
developments in governmental action, and it is not an expression of neo-liberalism
or economisation, although it has undergone some recent changes. Therefore, the
frequently used terms ‘privatisation’, ‘out-sourcing’ or ‘contracting out’ are not
suitable to properly describe the cooperation between administrative authorities and
private actors, at least as far as this cooperation as such is concerned.53
For analytical purposes,54 it is helpful to stress the connections between the three
different actors involved: the administrative authorities, the service providers,
sometimes called ‘suppliers’, and last but not least, the individual in need (entitled
person, ‘right holder’). There are legal relations between these actors, and these
relations form a triangle, the ‘triangle of social benefits provision’ (or ‘social
benefits delivery triangle’). Every legal relation follows its own rules, and also
has a specific statutory background. Yet, they do not exist to their own ends.
52
53
Example for a misled view: COM(2006) 117 fin., p. 5: ‘general aspects of this modernisation
process can be seen [. . .] the outsourcing of public sector tasks to the private sector, with the public
authorities becoming regulators, guardians of regulated competition and effective organisation at
national, local or regional level’.
54
For a detailed analysis Becker et al. (2011).
12 U. Becker
Fig. 1 Social Delivery provisioning relation

Triangle
service administrative
provider authority
social benefits relation

fulfilment relation
entitled person
Their common basis is a political decision. The decision of a political community

and its government to protect an individual, and this political decision constitutes a
public or general interest. Social protection is promised in the form of a social
benefit, and a rights-based jurisdiction will consequently create a respective enforce-
able right of the individual who fulfils the legal requirements (‘social benefits
relation’, Leistungsverh€ altnis). If this right is a right to a service, and if the compe-
tent governmental body does not own the necessary institutions or personnel for
providing such services, the latter has to make some sort of arrangement in order to
ensure that a private provider will take over the duty to fulfil the right. Usually, the
competent administrative body does not purchase the service from a private actor in
a stricter sense, but it will merely create a legal basis for service provision (‘provi-
sioning relation’, Beschaffungs- und Bereitstellungsverh€ altnis). The actual fulfil-
ment of the social right will take place on the basis of a legal relation between the
private benefit provider and the individual ‘right holder’ (‘fulfilment relation’,
Erf€ullungsverh€ altnis) cf. Fig. 1.
The connections between social benefits relations on the one hand, and the
relations between an administrative authority and a social benefits provider on the
other (provisioning relations) have led to the jurisdiction of the ECJ according to
which EU competition law is not applicable and the competent authority does not
act as an undertaking in the sense of the said rules when contracting with a private
provider55—because, as the Court states, ‘the nature of the purchasing activity must
be determined according to whether or not the subsequent use of the purchased
goods amounts to an economic activity’.56 It is remarkable that the ECJ uses
the term ‘purchase’ and ‘purchasing activity’. It might have understood that
term in a rather broad sense, but it is still disputable what forms of legal relation
55
On the background of the disputable, but standing jurisprudence according to which social
activities have a different quality compared to economic ones, see first ECJ of 17/2/1993 Case
C-159/91 and C-160/91 Poucet and Pistre [1993] ECR I-637; most recently ECJ of 5/3/2009, Case
C-350/07 Kattner [2009] ECR I-1513.
56
ECJ of 11/7/2006, Case C-205/03 Fenin [2006] ECR I-6295, par. 26. See for an analysis
Krajewski and Farley, ELRev. 32 (2007), pp. 111 et seq.
between an administrative authority and a private provider actually fall under this
concept.
In any case, the ‘provisioning relation’ serves as a legal basis for the regulation
of three fundamental aspects57:
– first, the admission or, generally speaking, the legal involvement of private
actors which may also be realised by the way of an administrative contract.
Such acts of admission or agreements serve to ensure that the actions of private
service providers become subject to all existing laws. In particular, they oblige
providers to offer their services under specific conditions, and in this way they
allow governments to assume their general responsibility and to guarantee that a
sufficient amount of services is being made available;
– second, the setting of adequate prices for the provision of services;
– third, the regulation of an appropriate level of quality and of appropriate
instruments in order to assess and ensure the fulfilment of these requirements.58
As far as the actual implementation of LTC services is concerned, there is a set
of legal principles which needs to be followed by the different actors and which
should be understood as legal guidelines for their actions.59 They partly follow from
the general ideas of good governance, partly from constitutional law60 or other
general legal sources.61 Namely, these principles are:
– security;
– efficiency;
– transparency;
– cooperation;
– individualisation, including freedom of choice.
57
For details concerning the situation in Germany see Becker et al. (2011), pp. 323 et seq., (2012),
pp. 1 et seq. and 103 et seq.
58
See for a detailed analysis of the use of legal instruments to the abovementioned ends Landauer,
2012, pp. 136 et seq.
59
See Becker et al. (2011, 2012).
60
Including the EU Charter of Fundamental Rights (CFR) as a general legal text on commonly
acknowledged fundamental rights in the EU; in particular Art. 1 (human dignity), Art. 2 and
3 (right to life and to integrity), Art. 7 (respect for private and family life), Art. 26 (integration of
persons with disabilities), and in a positive dimension, but very openly put, Art. 34 par. 1: ‘The
Union recognises and respects the entitlement to social security benefits and social services
providing protection in cases such as maternity, illness, industrial accidents, dependency or old
age, and in the case of loss of employment, in accordance with the rules laid down by Community
law and national laws and practices’.
61
See Council of Europe, R (89) 9 (fn. 10).
14 U. Becker
4.2 Non-professional Care
Some of the aforementioned principles also apply to the actions of non-professional

caregivers (or carers without professional status). In most cases, however, these
carers will not become part of a legal relationship with administrative authorities,
which means that a (formal) provisioning relation will not be established. Yet, in
some states they can receive financial support through social cash benefits, e.g. in the
United Kingdom, Ireland and Denmark.62 In other states, general rules on quality
standards also apply to care provided by relatives and other non-professional
carers.63
In practice, and notwithstanding the rather informal involvement in care arrange-
ments, non-professional caregivers play a major role for the functioning of LTC
systems all over the world. A system may set specific incentives in order to
strengthen this role, particularly by granting cash benefits. Yet, even if it does not
do so,64 it regularly leaves room for at least additional services to be performed by
relatives, neighbours or other non-professional caregivers. The extent of such
services is of substantial size, and it can be assumed that no LTC system can
work without those services. As in the case of professional care, the involvement of
non-professional care may also be based on a normative fundament as it is capable
of enhancing the autonomy of persons in need.
The important role of non-professional caregivers explains why it must be one of
the major tasks of governments to enable them to provide their services.65 The
respective measures may cover very different aspects: information and counselling
in order to improve the quality of the care services and to reduce personal respon-
sibility; social security coverage, especially with a view to accidents and old age;
provision of substitutes for vacation periods. And there might be a growing interest
in concluding formal and legally binding agreements with non-professional care-
givers in order to establish a provisioning relationship as well as a stable legal basis
for their work. One aspect must be stressed in particular: as it is mostly women who
take care of their relatives, even among parents-in-law, it is always—and for as long
as existing role models do not change profoundly—a task of great importance in
terms of gender politics to improve the situation of non-professional carers and
reinforce the efforts to extend the group of persons interested in providing care.
But it is not enough to take better care of non-professional caregivers as far as the
social benefits administration is concerned. It is also essential that non-professional
carers be given the opportunity to actually provide care. Taking into account that
the employment strategies presently followed in Europe are aimed at putting more
62
See for an overview Becker and Lauerer (2011), pp. 121, 133 et seq.
63
See Urban (2016).
64
As it is the case in Japan for example.
65
See for Germany Becker and Lauerer (2011), pp. 121, 138 et seq.
and more people into formal employment relationships,66 reconciliation of work

and family life becomes an increasingly urgent issue. In particular, it is necessary to
regulate labour relationships in a way that allows gainfully employed persons to
take time off and get leave for caretaking purposes, at least for a certain period of
time. The most effective way may be to confer a right of care leave on gainfully
employed persons, which would imply that employers are to grant this right
accordingly. Another way is to rely more on voluntary action and to leave the
regulation of care leave to collective bargaining.
4.3 Mixed Provision and the Need for Coordination
Ultimately, effective LTC systems will, also with regard to the role of benefits
providers, need to be based on a balanced mix of different forms of benefits.
Non-professional carers will not be willing to work without societal support and
without a certain personal scope of action, and the LTC system must offer incen-
tives for non-professional care. At the same time, non-professional caregivers will
not be able to perform well without having the possibility to also resort to and to
rely on professional care provision.
In ageing societies, both labour supply and caregiving opportunities must be
promoted.67 For this reason, a balanced mix of LTC provisions seems to be the best
option in order to meet the present challenges.68 This suggestion is strongly
supported by the finding that relatives and other members of society are much
more ready to assume care obligations if professional carers and care facilities stand
by to help out and to reduce the workload of non-professional caregivers.
5 On the Outline of the Project
As far as the state of research is concerned, various publications on LTC benefits in

Europe exist.69 Probably the most comprehensive ones are the OECD studies on the
challenges of providing and financing LTC,70 and on evidence and good examples
66
See Council Decision of 5/10/2015 on guidelines for the employment policies of the Member
States for 2015 (OJ L 268/2015, p. 28), Guideline 6: ‘Enhancing labour supply, skills and
competences’, including the following paragraph: ‘Female participation in the labour market
should be increased and gender equality must be ensured, including through equal pay. The
reconciliation between work and family life should be promoted, in particular access to affordable
quality early childhood education, care services and long-term care.’
67
See also Scheil-Adlung and Bonan (2013), pp. 25 et seq.
68
See Laferrère and Van den Bosch (2015), pp. 331 et seq.
69
See also for an overview on existing national legislation in the EU: Mutual Information System on
Social Protection, Comparative Tables, XII (http://www.missoc.org/MISSOC/INFORMATIONBASE/
COMPARATIVETABLES/MISSOCDATABASE/comparativeTableSearch.jsp).
70
OECD (2011). See also the articles in Eurohealth (2011), no. 2–3.
16 U. Becker
of how to meet these challenges.71 There are also different studies on very recent
LTC reforms.72 Nevertheless, what is missing is a detailed analysis of the legal
background, the normative guidelines73 and the legal instruments for LTC in
Europe,74 which would combine detailed descriptions with specific insights into
the above-mentioned problems of coordination from multiple perspectives.
In order to provide a broad overview, this collection includes a wide range of
European country studies75 from different parts of the continent,76 from different
‘jurisdictional families’ with different types of social benefits77 and different social
models.78 This allows for a macro-comparison which clearly shows the landscape
of different social protection systems relevant for the support of persons dependent
on care.
As far as the method is concerned, it is true that our comparison starts from the
observation of specific legal problems, namely the overlap between different social
protection schemes and the need for coordination of the latter. One may object to
the supposition that legal comparisons still have to follow the functionality
approach,79 as a comparison may come into conflict with the postulation that the
comparator of laws ‘must rethink the original question and purge it of all the
dogmatic accretions of one’s own system.’80 Yet, every problem that calls for
solutions is, as a rule, only recognised as such as a result of the study of certain
legal systems.81 What is important is to subsequently formulate this problem in
such a way that it is freed from its embedding in positive law and raised to a more
abstract level. In this regard, social policy is a very helpful discipline even for a
comparison concentrating on social law as it sheds light on the functional back-
ground of this law and may help to understand the social deficits to which law
should give an answer.82
71
OECD (2013).
72
Costa-Font (2011) and Leichesenring et al. (2013).
73
See for the UN Convention on the Rights of Persons with Disabilities above, Sect. 2.1; for the
constitutional background and the EU CFR above, Sect. 4.1.
74
See for economic aspects Costa-Font and Courbage (2012); De La Maisonneuve
and Martins (2013).
75
See for outside Europe WHO (2003).
76
See for Southern Europe Da Roit et al. (2013), No. 4, pp. 577 et seq.
77
78
See for the very restricted meaning of these models above, Sect. 3.2.
79
The current debates on the comparative method, which continues to focus on the principle of
functionality, essentially deal with two different issues: for one thing, they deal with epistemo-
logical requirements which mainly regard the finding of the subject that forms the basis of a
comparison, i.e. which regard the locating of the relevant law. For another thing, they deal with the
function and the functioning of the law and, in doing so, address the objectives of the comparison
of laws, Becker (2010b), pp. 11, 20 et seq.
80
Zweigert and K€otz (1998), p. 35. For the relevance in social law research Pieters (1998),
pp. 715, 726 et seq.
81
See Esser (1972), pp. 97, 103 et seq., 110 et seq.
82
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Benefit Structures for Persons Dependent
on Long-Term Care in Austria
Walter J. Pfeil
Contents
1 Synopsis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
2 Specific Benefit Systems for Persons Dependent on Long-Term Care in Austria . . . . . . . . . 24
2.1 Long-Term Care Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
2.1.1 General Eligibility Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
2.1.2 The Definition of Long-Term Care Dependency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
2.1.3 Seven Levels of Care Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
2.1.4 Special Provisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.1.5 Procedure and Granting of Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.1.6 Competent Funding Entities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
2.2 Benefits in Kind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
2.2.1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
2.2.2 Structural Commonalities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
2.3 Other Services and Arrangements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
2.3.1 General Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
2.3.2 Protection of Caregivers Under Social Security Law . . . . . . . . . . . . . . . . . . . . . . . . . 39
2.3.3 24-Hour Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
3 Fundamental Aspects Regarding an Appraisal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
3.1 An Independent Social Risk Covered by Benefits and Services of a Universal
Nature . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
3.2 Cash Benefits and Benefits in Kind Coming from Different Sources . . . . . . . . . . . . . . . . 47
3.3 Still More Dissociation than Coordination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
3.4 Framework Conditions for Professional Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
3.5 Framework Conditions for Informal Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
3.6 More Self-Determination for Persons in Need of Long-Term Care . . . . . . . . . . . . . . . . . . 52
4 Attempts of an Appraisal after almost 25 Years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54
W.J. Pfeil (*)

Department of Labour Law and Business Law, University of Salzburg, Salzburg, Austria
e-mail: walter.pfeil@sbg.ac.at

https://doi.org/10.1007/978-3-319-70081-6_2
20 W.J. Pfeil
1 Synopsis
Long-term care dependency in Austria has been recognised as an independent

social risk (only) since 1993. Up to then, only isolated and rather dissimilar benefits
and services existed which were partly based on the causality principle or which
were granted within the context of social assistance (Sozialhilfe)—and here partic-
ularly in the form of benefits in kind. The most commonly paid cash benefit related
to long-term care at the time was referred to as “helplessness allowance” within the
context of the statutory pension insurance. This was an allowance in addition to the
monthly pension that was granted in the case of a certain minimum need for
“maintenance and help”; the amount (of a converted monthly sum of approx. €
217 in its latest figures) was, however, independent of the actual need.1
These and other cash benefits related to long-term care were replaced as of 1 July
1993 by the care allowance according to the Austrian Federal Long-Term Care
Allowance Act (Bundes-Pflegegeldgesetz, BPGG2) which, by way of its seven
levels, is geared at a particularly strong needs orientation. Due to the (then)
constitutional distribution of competences in the context of the federal structure
of Austria, this benefit could only be addressed to persons who were already entitled
to a separate benefit regulated under federal law. The group of persons entitled to
these benefits according to BPGG initially only included the recipients of a basic
allowance paid under federal law, i.e. particularly of a pension paid out of the
statutory pension insurance, a full pension paid out of accident insurance or a
benefit paid out of the pension system for federal civil servants and their surviving
dependants.
According to the constitutional distribution of competences, however, cash
benefits related to long-term care for civil servants of the Austrian provinces and
municipalities who are subject to public law were the responsibility of the prov-
inces.3 At the time, the latter enacted province-specific long-term care allowance
acts which also included entitlements for other persons who were not, or could not,
be accounted for in BPGG for lack of regulatory options at the federal level.
Province-based long-term care allowance therefore also came into consideration
for persons dependent on long-term care who were not entitled to a pension or the
like, i.e. especially persons in their role as “mere relatives”, but also gainfully
employed persons and persons dependent on social assistance.
As to its content, the long-term care allowance acts defined for the provinces
were mostly patterned on BPGG, since the provinces had concluded a treaty with
the Federal Government—the agreement between the Federal Government and the
provinces according to Art 15a B-VG (BGBl 1993/866), mainly abbreviated as
1
Cf. overview in Pfeil (1994), pp. 53 ff.
2
Austrian Federal Law Gazette (Österreichisches Bundesgesetzblatt, BGBl) 1993/110, as
amended by BGBl I 2016/116.
3
Cf. Art. 21 Austrian Federal Constitution Act (Bundes-Verfassungsgesetz, B-VG), BGBl 1930/1
as amended by BGBl I 2017/138.
Benefit Structures for Persons Dependent on Long-Term Care in Austria 21
“Long-Term Care Agreement”—committing themselves to enact long-term care

allowance regulations “with the same objectives as those on federal level”. This
coexistence of ten long-term care allowance acts and regulations based thereon,
with a multiplicity of decision-makers to implement the former,4 had always been
viewed critically. Only in 2012 could a standardisation be effected by passing the
Long-Term Care Allowance Reform Act (Pflegegeldreformgesetz) (BGBl I 2011/
58): by way of a constitutional amendment with regard to the matter of “long-term
care“ the sole responsibility of the Federal Parliament was determined and
standardised5 and all long-term care benefit entitlements were reassigned to
BPGG. As for the definition of the category of persons eligible for benefit, § 3 of
the latter still primarily focuses on recipients of a basic allowance regulated by
federal legislation. However, according to § 3a BPGG this now also includes all
other persons who have their habitual residence in Austria and who are Austrian
citizens or are considered equivalent thereto.6
The main task that the Austrian provinces adopted in 1993 by way of the Long-
Term Care Agreement—according to the constitutional distribution of competences
that continued to be applicable—concerned, and still concerns, the provision of
benefits in kind for persons dependent on long-term care. Yet, the relevant regula-
tions continue to be related to social assistance or to the disability law of the
respective province, the latter of which has partly evolved from this field as a
form of “special social assistance”.7 This means, in particular, that the use of long-
term care services—usually organised by the provinces and/or the municipalities—
at home or in a facility designated for this purpose (mostly called “Heime”) is often
based on a strict subsidiarity principle, and that contributions or co-payments are to
be borne by the benefit recipients, certain relatives or even by particular third
parties.8
Apart from that, both cash benefits and benefits in kind for persons in need for
long-term care are financed from general tax revenues. The introduction of a long-
term care insurance was, at first, not up for discussion. Meanwhile a changeover has
been urged—not least by the provinces and municipalities that are increasingly
reaching their budgetary limits—to a system financed at least in parts from
4
The number of responsible funding bodies, amounting to up to 303 before the reform of 2013, has
meanwhile decreased to only six; see also below B I 6.
5
Cf. Art. 10 Para. 1 Z 11 B-VG.
6
This particularly includes persons whose equal status can be derived from treaties or European
Union law, who were granted asylum or who were legally entitled to reside within the EU or who
have a comparable residence permit; cf. for details § 3a Para. 2 and 3 or, respectively, § 3b BPGG;
see also below B I 1.
7
Cf. on this Mayer and Pfeil (2012a), pp. 385 ff.
8
Some changes have to be expected in this respect since the Federal Parliament has passed a
constitutional law (laid down in § 330a ASVG) that will be effective from 2018 and will ban any
kind of compensation that would have to be paid by persons claiming stationary care (or their
relatives) who own certain properties; see below Sect. 2.2.2.
22 W.J. Pfeil
compulsory insurance contributions. However, the objectives raised against these

demands9 are likely to exclude an insurance-based solution also in the near future.
Nevertheless References to social law are found in the Austrian long-term care
provision system, too. Apart from the connection to social insurance benefits as
mentioned in § 3 BPGG and the primary responsibility of the statutory pension
insurance funds for the management of care allowance, these references mainly
affect the protection of caregivers under social security law, since according to the
division of competences10 this, in turn, falls within the competence of the Federal
State (see Sect. 2.3.2 below).
However, the Long-Term Care Agreement also contains other obligations that
are to help minimise the risk of long-term care dependency. This includes the
creation and assurance of quality standards for long-term care services, predomi-
nantly in the field of inpatient care. This task falls within the responsibility of the
provinces, who in turn have enacted province-based regulations.11 It is also the
responsibility of the provinces to organise the professional law of the social care
professions, i.e. of those persons whose main professional task is to provide long-
term care and care assistance to elderly persons or to persons with disabilities
dependant on care or care assistance.12
Other problems of demarcation from federal law have to observed with regard to
both province-based regulations and regulations concerning the social care pro-
fessions, meaning that there are also deficiencies at the respective interfaces (which
are therefore, at best, contact points). For if an inpatient facilities is a hospital, it is
also subject to federal regulations.13 Further, the professional law of the nursing
professions in the stricter sense also falls within the remit of the Federal State.14 At
least, the commonalities between health and nursing care on the one side and the
provision of long-term care to elderly persons or persons with disabilities on the
other have resulted in a certain common ground that also allows the various
professional groups to be employed in either field.15
9
Particularly the increase of non-wage-labor costs which results from this, and the related further
negative effect on the—by comparison already heavily affected—production factor ‘work’, as
well as the fact that long-term care dependency bears a lot less connections with gainful activity
than other risks covered in terms of social insurance law and therefore should be financed by all
(tax payers) and not only by a (more or less) accidental collective of insurees. Cf. for discussion
purposes e.g. St€ockl (2011), pp. 152 ff.
10
Cf. also Art. 7 Long-Term Care Agreement.
11
For more detail, see Krauskopf (2012), pp. 351 ff.
12
Cf. only Klaushofer (2012), pp. 313 ff.
13
It is the Austrian Hospital and Convalescent Home Act (Krankenanstalten- und
Kuranstaltengesetz, KaKuG), BGBl 1957/1 as last amended by BGBl I 2017/131, which in the
form of a Basic Act of the Federation merely provides a framework for the legislation of the
individual Austrian province.
14
Cf. particularly the Austrian Health and Nursing Act (Gesundheits- und Krankenpflegegesetz,
GuKG), BGBl I 1997/108 as last amended by BGBl I 2017/131.
15
The decisive legal framework is, here too, laid down by an agreement pursuant to Art. 15a
B-VG, cf. BGBl I 2005/55.
All these problems mainly have to do with the fact that a historically evolved
segregation between the field of “health care” and that of “social care” exists
which, today, is no longer appropriate in many cases. Matters relating to health care
fall within the remit of the State who, as regards the execution of tasks, particularly
relies on the self-administrated entities of the social insurance. The “remainder” left
to the provinces and municipalities was originally limited only to the subsidiary
system and to the system of “poor relief”—which, since the implementation of
social insurance, had actually been oriented exclusively at otherwise undocu-
mented, exceptional cases.16 The scope of this field has, of course, greatly expanded
and meanwhile reaches expenditures similar to those spent on care allowance.
However, the benefits and structures are still greatly shaped by the old “social
welfare logic”: it finds its expression in the subsidiarity principle, in strict needs
assessments and yet broad discretionary powers on the part of the authorities, a high
proportion of charity involvement in service provision despite greater
professionalisation, and particularly in vast regional differences between and within
the different Austrian provinces (see Sect. 2.2 below).
Nevertheless, in some areas efforts have been made to standardise or, respec-
tively, adjust the benefit system to societal, demographic and economic develop-
ments. This was effected by way of State regulations which not so much concern
the benefits as such but rather the structures and framework conditions for
utilisation of these benefits by persons dependent on long-term care and their
relatives. In this context, the minimum standards for nursing home contracts are
worth mentioning; they have been incorporated into consumer protection law.17
This matter falls within the State compentence of “civil rights” (Art. 10 Para. 1 Z
6 B-VG) just as much as the Nursing Home Residence Act,18 which regulates and
limits the admissibility of restrictions on freedom on nursing home residents.
Also predominantly regulated by State law is the area concerning what is
referred to as 24-hour care: in this context, framework conditions have been created
that are to make continuous assistance in the patient’s home easier due to special
provisions in labour (and working time) law, as well as in professional law for self-
employed persons.19 These provisions are, first and foremost, to be regarded as
an—only partially successful—attempt at gaining control of the widespread unlaw-
ful employment of long-term caregivers and assistance staff from the (north-)
eastern countries bordering Austria. The fact that for this objective exceptions
from the otherwise rigid professional rules pertaining to the Austrian Health and
Nursing Act (GuKG) were created which, for instance, did not apply to carers in
16
The relevant field of responsibility in Art. 12 Para. 1 Z 1 B-VG still comes under “poor relief”,
even if the laws based on it later addressed matters like welfare, social assistance and, after that,
the guaranteed minimum income or equal opportunities.
17
Cf. §§ 27b ff KSchG, BGBl 1979/140 as meanwhile amended by BGBl I 2017/50.
18
HeimAufG, BGBl I 2004/11 as last amended by BGBl I 2017/59.
19
Austrian Act on In-Home Care (Hausbetreuungsgesetz, HBeG), BGBl I 2007/33 as last amended
by BGBl I 2008/57; Austrian Trade Regulation Act (Gewerbeordnung, GewO), BGBl 1994/194 as
last amended by BGBl I 2017/107.
24 W.J. Pfeil
residential homes for persons with disabilities, is one of the many reasons that give
rise to doubt as to the justification of this special right (see Sect. 2.3.3 below).
One last—also structure-related and federally regulated—element is to be men-
tioned in this first overview. It is the Nursing Care Fund (“Pflegefonds”) that was
established in the context of the Care Fund Act (Pflegefondsgesetz, PFG, BGBl I
2011/57, at last amended by BGBl I 2017/22) and that provides for targeted
contributions from federal funds to the individual provinces and municipalities
with the purpose of “securing, as well as constructing and expanding, the system of
care assistance and nursing care services in the area of long-term care”. This fund
was initially set to run only until 2014, but it has recently been extended until
2021.20 The subdivision of care assistance services and long-term care services
effected by the Austrian Care Fund Act (PFG) is also to be laid down as a basis for
the context at hand (see Sect. 2.2.1 below).
2 Specific Benefit Systems for Persons Dependent

on Long-Term Care in Austria
The Austrian social system presently offers two specific (public) (types of) benefits
to provide for persons dependent on long-term care: for one, long-term care
allowance according to the Austrian Federal Long-Term Care Allowance Act
(BPGG); on the other, long-term care and care assistance benefits in kind, either
in the form of outpatient care services, or in the form of inpatient accommodation
and provision of care in a residential home or a similar facility. A third type added
to this consists of (direct) funding and (indirect) special facilities for the utilisation
of services at home, particularly in the context of 24-hour care. Other benefits and
services also available to persons dependent on long-term care due to the fact that
they also fall within other benefit categories (e.g. due to illness, invalidity, disabil-
ity, general neediness), are dealt with here only to the extent required for the
demarcation or, respectively, more precise definition of (the requirements
pertaining to) long-term care dependency.
These three areas shall be described in separate chapters below. However, in
conclusion, a critical analysis of their interrelationship shall be provided.
While for the first 4 years targeted subsidiary payments amounting to a total of € 685 million
20
were available, nearly the same amount has been available for the first two years of extension and
will be increasing until 2021 up to € 417 million, cf. § 2 Para. 2 PFG.
2.1 Long-Term Care Allowance
2.1.1 General Eligibility Requirements
The long-term care allowance according to § 1 BPGG is to cover any increased

expenditure incurred for care needs by way of a lump sum; the objective is to
provide persons dependent on long-term care with the necessary care and assistance
to the greatest extent possible extent, as well as to improve the possibility of leading
a self-determined life in line with their requirements. This programmatic aim makes
at least three points clear: (1) The long-term care allowance is to cover only a part of
the expenditure that (2) the person involved has to pay additionally due to his or her
long-term care dependency, and while (3) its aim is not to fully cover the person’s
needs, it shall help extend the individual options related to this purpose.
The group of generally entitled persons has already been described in the
introductory overview. Aside from the fact that eligibility for long-term care
allowance is independent of the income or assets of the dependent person or,
respectively, of that of potential relatives,21 meaning that it is a universal benefit,
only two problematic aspects are to be mentioned. The first one concerns the
condition of habitual residence in Austria linked to the benefit claim as provided
for in both § 3 Para. 1 and § 3a Para. 1 BPGG. The second one refers to the restricted
eligibility of persons with an entitlement to “basic” benefits or services, (§ 3) or to
persons who may not fulfil any comparable criteria but who are at least citizens of
Austria or a legal equivalent thereof (§ 3a). Both aspects have implications
pertaining to European Union law. While the strict condition of habitual residence
in Austria is partially rendered void by the provisions relating to European social
law coordination, § 3a itself contains references to European Union law.
By way of restricting the eligibility to long-term care allowance to persons who
have their habitual residence in Austria, a certain relation with Austria is postulated.
As a rule, this relation is not assumed (any longer) or at least considered as
disrupted once the person involved spends more than 2 months per year abroad.
However, this restriction cannot apply if the (habitual or even permanent) stay
abroad takes place in another EU member state, in Switzerland or in an EEA
country. In this case, the long-term care allowance is to be exported to the
respective country, insofar as Austria is responsible for the provision of health
insurance to the generally eligible person dependent on long-term care. Fact is that
the CJEU—irrespective of deviating national affiliation (see Sect. 2.1.2 below)—
defines long-term care allowance as a cash benefit in the event of illness22 which,
according to Art. 7 VO 883/2004 is to be paid also if the beneficiary happens to
21
Cf. already Art. 1 Para. 5 of the Long-Term Care Agreement.
22
Cf. the two fundamental decisions of the CJEU in cases C-215/99, Jauch [2001], I-01901, and,
respectively, C-286/03, Hosse [2006], I-01771.
26 W.J. Pfeil
reside in another member state.23 For persons permanently residing in another

member state an export of long-term care allowance will only be considered if an
inter-state agreement to this effect has been concluded.24
While for recipients of an Austrian pension or of any other basic benefit
according to § 3 BPGG the issues of citizenship or legal residence in Austria are
of no relevance, they do form the core requirements for eligibility according to § 3a
BPGG. This corresponds to the former regulations in the long-term care provisions
of the Austrian provinces which for their part had their origins in social welfare law
(Sozialhilferecht). The assessment of the ‘legality’ of the stay abroad is, even now,
not undertaken in the law pertaining to long-term care allowance, but is primarily
based on the law of aliens and the right of residence. This also effects an exclusion
from the eligibility for long-term care allowance for economically inactive EU or,
respectively, EEA citizens during the first 3 months of their stay, for persons who
have been allowed to enter Austria without a visa (i.e. “tourists”), or for asylum
seekers (cf. § 3a Para. 3 BPGG). The eligibility for long-term care allowance of
recipients of a foreign pension, too, depends primarily on the right of residence of
the person affected25; once it has been recognised, this right cannot become void on
grounds of the receipt of long-term care allowance.
2.1.2 The Definition of Long-Term Care Dependency
The core requirement for the entitlement to long-term care allowance is defined in §
4 BPGG. According to Para. 1 of this regulation, care allowance is granted if, “due
to mental, physical or emotional impairment or due to an impairment of the senses,
a continuous need for care and assistance of at least six months, is to be expected.”
The term “disability” as used in this context might create the impression that the
need for long-term care requires a very specific impairment. Yet, disability is
understood in a very unspecific26 and comprehensive way, showing that long-
term care allowance represents a final benefit which is generally granted
23
The same applies to residence in Switzerland or an EEA State; the number of such benefit
exports is low, however: on the key date of 31 December 2015 it applied to 628 persons,
cf. Austrian Report on Long-Term Care Provision 2015 (Pflegevorsorgebericht 2015), p. 95.
24
At present, this is regularly not the case.
25
This also applies to European Union citizens; however, the relationship between EU coordina-
tion law and residence law is not sufficiently clear; cf., most of all the ruling in the case of 19 Sep
2013, C-140/12, Brey.
26
Therefore, there is neither a connection with federal definitions of disability, which were in some
cases even formulated only at a later stage, such as those in § 1 Para. 2 of the Austrian Federal
Disability Act (Bundesbehindertengesetz, BBG: BGBl 1990/283 as last amended by BGBl I 2017/
18, which translates as: “[. . .] impact resulting in a non-temporary physical, mental or psycholog-
ical functional impairment or impairment of the sensory functions [. . .] which may make partic-
ipation in social life difficult. ‘Non-temporary’ denotes an estimated period of no less than six
months.”), nor with similar definitions at individual state level that differ only in detail; cf. again
Mayer and Pfeil (2012a), pp. 400 f.
independently from the actual cause of the need for help and care assistance from
another person. Reference to disability of whichever sort however excludes two
types of incapacities: for one, incapacities originating from the circumstance that
the person involved cannot carry out certain tasks merely due to the fact that he/she
has never learnt how to do them (e.g. cooking). For another, need for help and care
assistance does not qualify as linked to disability if the person involved is merely
too young to be expected to be able to carry out certain tasks autonomously.
Accordingly, § 4 Para. 3 BPGG stipulates that in the assessment of the need for
care among children and adolescents up to the age of 15, long-term care is only to
be considered to an extent that exceeds the required level of care typically provided
to children and adolescents of the same age and without disability (see also Sect.
2.1.4).
Regarding the remaining criteria for eligibility to long-term care allowance, only
the minimum period of an expected 6 months has been determined in the law. “An
expected” period of time means that a prognosis is to be made and that, accordingly,
a need for care will be recognised as such only if it is expected to last for a longer
period.
As for the point at which continuous long-term care is required, this can be
derived from the provision issued by the competent Federal Minister based on §
4 Para. 7 BPGG (currently the Minister for Labour, Social Affairs and Consumer
Protection), i.e. the classification provision [Einstufungsverordnung] (EinstV,
BGBl II 1999/37 as last amended by BGBl II 2011/453). According to its § 5 the
minimum intensity of the need for care is to be recognised only if care services are
required on a daily basis or at least “several times”, i.e. two or three times a week,
with the care services not necessarily having to be provided for exactly the
same task.
EinstV also defines what counts as need for care and, particularly, what is to be
understood as care assistance and help within the meaning of § 4 Para. 1 BPGG.
Pursuant to § 1 Para. 1 EinstV, care assistance (“Betreuung”) comprises all activ-
ities required and carried out by another person within relatively short intervals
which mainly meet the needs of the personal living situation, and without which the
person dependent on long-term care would be prone to self-neglect. Para. 2 of this
provision in this context mentions the examples of getting dressed and undressed,
personal hygiene, cooking and eating, continence care and going to the toilet, taking
medication, and mobilisation assistance in the narrower sense (i.e. within the
particular appartment). Each task is allotted a guidance level/minimum value for
the time approximately spent on it27; the assessment of the need for long-term care
is primarily based on these values (see below Sect. 2.1.3).
27
Thus, pursuant to § 1 Para. 3 EinstV, a guide value (that may exceed or fall below) 2 20 min
applies for assistance required for getting dressed and undressed, and pursuant to Para. 4 leg. cit. a
minimum value of 2 25 min (that may, where a special need arises, also be exceeded) applies for
daily body care.
28 W.J. Pfeil
Pursuant to § 2 Para. 1 EinstV, help (“Hilfe”) is defined as a postponable task to be

carried out by another person, i.e. a task that concerns the material living situation
and is necessary for securing the livelihood of the person in need. The needs to be
considered in this context are comprehensively listed in Para. 2 leg. cit.,28 with each
area of needs having been allotted a fixed monthly time value of 10 h in Para. 3 of this
regulation.29
Both help and assistance services are exclusively defined in terms of activities
that could generally be carried out by any person without any particular medical
qualification. This makes clear one essential aspect that demarcates long-term care
from illness within the meaning of health insurance law: illness is basically defined,
pursuant to § 120 Z 1 ASVG30, as an irregular physical or psychological state of
health which necessitates (medical) treatment that mainly consists of medical help
provided by a physician (cf. §§ 133 Para. 1 Z 1 or, respectively, 135 ASVG).
Medical treatment is required only and for as long as the achievement of one of its
aims as described in § 133 Para. 2 ASVG is still within the range of possibility.31
This points to the second essential criterion demarcating illness from long-term care
dependency, since the latter expressly does not stipulate the improvement or even
curing of the patient’s unfavourable state of health as a precondition.
This means that only non-medical needs of daily living are considered in the
assessment for long-term care allowance. The level of long-term care dependency is
to be determined first by way of simple addition of the recognised needs; it may,
however, be extended with a view to two categories of persons by way of a hardship
allowance. The latter are granted as fixed lump sums to (a) severely disabled
children of up to 7 years of age to the extent of 50 (or adolescents up to 15 years
of age: 75) hours per month (§ 4 Para 3 BPGG in connection with § 1 Para.
5 EinstV); (b) to persons older than 15 years of age with severe mental or
psychological disability, particularly dementia diseases, to the extent of 25 h per
month (§ 4 Para. 5 BPGG in connection with § 1 Para. 6 EinstV).
28
Provision with food, medication and commodities of daily life; cleaning of the home of the
patient and of personal effects; washing of underwear and bed linen; heating of the main living
quarters including the provision of heating material; as well as mobility assistance in the further
sense (¼ activities outside the home).
29
Only for children up to the age of 15, a mobility assistance in the broader sense can be taken into
consideration, which will amount to a maximum of 50 h per month (§ 2 Para. 4 EinstV). This is to
address the special requirement for assistance through another person with a view to doctor’s
visits, therapy sessions or the way to school.
30
General Social Insurance Act (Allgemeines Sozialversicherungsgesetz, ASVG), BGBl 1955/189
as last amended by BGBl I 2017/151.
31
Sentence 2 of this provision reads: “The health treatment is, to the furthest extent possible, to
restore, strengthen or improve the patient’s health, capacity for work and the ability to carry out the
most vital personal needs”.
Table 1 Recipients of Care Allowance and eligibility criteria

Average amount
Average Additional of monthly long- Proportion
hours (intensive) care term care of total
required through qualified allowance Number of number of
per month personnel (Pflegegeld) beneficiaries beneficiaries
Level 1 >65 Hours – € 157.30 116,970 25.9%
Level 2 >95 h – € 290.00 110,103 24.4%
Level 3 >120 h – € 451.80 80,673 17.9%
Level 4 >160 h – € 677.60 64,766 14.4%
Level 5 >180 h Exceptionally inten- € 920.30 49,230 10.9%
sive care
Level 6 >180 h Uncoordinable € 1285,20 19,778 4.4%
regarding time
needed/continuous
assistance
Level 7 >180 h Incapable of carrying € 1688,90 9447 2.1%
out targeted move-
ments by means of
the four extremities
Total € 476 (average) 450,967a 100%
a
At approx. 8.5 million inhabitants, this corresponds to a proportion of around 5.1% of the overall
population
2.1.3 Seven Levels of Care Allowance
The assessment of the need for care assistance and help from another person is, first,
based on the time required to deliver the above. This is to be extrapolated to a
monthly value (¼ 30 days) and becomes applicable in terms of eligibility for level
1 care allowance only at an average rate32 of more than 65 h.
Care allowance levels 2–4, too, are only based on the temporal extent of the
objective need for care assistance and help from another person. In order to be
categorised under level 5 and higher, however, both a monthly average care
requirement of more than 180 h and, in addition, the need for intensive care through
qualified personnel is a precondition: as for level 5, this is defined as requiring
“exceptionally intensive care”, which is the case if a caregiver is required to be on
continuous stand-by, or if the former has to check on the patient within relatively
short intervals, or if more than five care sessions (one of which at night) are
required.
As for level 6, an additional precondition, apart from the 180 h required for care
services, is a certain uncoordinability with regard to the time needed to carry out
32
This is to compensate the effects of fluctuations within the year.
30 W.J. Pfeil
care-related tasks33, or the need for a caregiver to continuously attend the patient
due to the high risk of physical endangerment to self and others. As for level
7, finally, the person dependent on care must have been assessed as incapable of
carrying out targeted movements by means of the four extremities, thus also be
incapacitated of functionally implementing the desired tasks; or be in an equally
adverse health condition (e.g. be dependent on a respirator).
The following Table 1 lists the individual levels and allocates the corresponding
amount for care allowance as stipulated in § 5 BPGG.34 The two columns furthest to
the right show the number of beneficiaries in the various care levels35 and the
overall proportion.
The requirements for correct categorisation are to be assessed individually for
the person dependent on care services. This however excludes the question as to
who provides the help considered necessary, how it is organised, or if it is available
at all. It therefore makes no difference whether the services are provided by family
members, neighbours etc. or by professional personnel, whether they are provided
in the home of the dependent person or in an institution or, respectively, whether
they are provided under contractual obligations or, possibly, even illegally (see
below Sect. 2.3.3).
Very important, however, is the question as to whether the need for care can in
part be met or has been met by the use of therapeutic appliances. Pursuant to §
3 EinstV, care assistance or help from another person is not deemed necessary if the
use of a simple therapeutic appliance can be reasonably expected from a person
dependent on care, or if any other therapeutic appliance is in fact available, or if
provision of the latter can be guaranteed to the greatest extent due to it being
financed through a public funds.36
Also in other cases, (the possibility of) cost coverage through alternative means
to fulfil the need for care in whole or, at least, in (one specific) part is an exclusion
factor accounted for in the assessment of care allowance. This is especially true for
benefits granted by the statutory health insurance, be it in the framework of medical
nursing care in the home of the patient (cf. § 151 ASVG), or in the context of long-
term care provision in a medical institution (cf. only § 144 ASVG). In the latter
case, care allowance entitlements will be suspended37 for the duration of the
inpatient treatment, since the costs will be borne (to a major extent) by a health
33
This applies in accordance with § 7 EinstV if the long-term care schedule cannot be complied
with due to the particularity of the disability, and if the care measure must be provided without
delay.
34
The originally intended automatic adjustment of care allowance was cancelled already in 1996.
Ever since, only two ad-hoc adjustments have been effected (2005 and 2009), meaning that the
care allowance has experienced a considerable loss in value.
35
As per December 2016, Die € osterreichische Sozialversicherung in Zahlen, 39th edn., p. 29.
36
A simple therapeutic appliance could mean, for instance, medical slippers or a walking stick;
other appliances to be considered could be a nursing bed, a stair lift or even (with a view to
mobility assistance in the further sense) a transport service for persons with disabilities.
37
Cf. § 12 Para. 1 Z 1 BPGG, but see also exceptions in Para. 3 of this provision.
insurance provider; specific areas of need, however, require a differentiation from

sickness benefits: this is effected by case-law in accordance with the circumstances,
i.e. depending on whether or not the tasks in question could or can be carried out
autonomously on a regular basis by an otherwise healthy person. If the medico-
therapeutic element prevails, then the service in question is not to be recognised as
relevant in terms of a long-term care need.38 It is irrelevant in this regard whether
benefits to cover this need can actually be claimed from the health insurance or any
other part of the social system.
In the case that further monetary benefits are granted in connection with long-
term care dependency due to federal legislation or foreign regulations, such benefits
are to be taken into account in the calculation of long-term care allowance (cf. §
7 BPGG). In the case of increased family assistance [“erh€ ohte Familienbeihilfe”],
which is granted to severely disabled children according to § 8 Para. 4 of the
Austrian Family Compensation Act (“Familienlastenausgleichsgesetz” - BGBl
1967/376 as last amended by BGBl I 2013/163), the amount to be taken into
account is limited to € 60 per month. In cases where long-term care dependency
is due to an accident or a similar incident, and where the care allowance recipient
can claim damages related to the incident, the claims for damages overlapping the
care allowance are conveyed directly to the provider of care allowance (cf. §
16 BPGG).
2.1.4 Special Provisions
The abovementioned form of categorisation is mostly described as “function-

related”, since it is based on specific (functional) deficiencies. A feature also
applicable in terms of the BPGG is, in exceptional cases, the diagnosis-related
categorisation: here, a minimum level is to be granted, based on specific impair-
ments. According to § 4a Paras. 1 to 3 BPGG, this first and foremost applies to
persons who are mainly dependent on the independent use of a wheelchair,39 if this
dependency has resulted from a particular health impairment such as paraplegia.
Pursuant to Paras. 4 to 6 leg. cit., certain minimum levels are also to be granted to
persons with severe visual impairments, blind persons or, respectively, deaf and
blind persons. All these cases may sometimes also require functional
categorisation, with the higher level being relevant respectively (§ 4a Para.
7 BPGG).
A further special regulation concerns the situation of children or adolescents
dependent on long-term care who would not (yet) be able to carry out certain tasks
38
Accordingly, dressing changes or therapeutic measures on children (e.g. Bobath) are not relevant
with regard to long-term care benefits; the administration of insulin or heparin shots, however, or
tube feeding via a PEG tube are to be considered in the assessment of long-term care needs
according to BPGG.
39
This means “active” wheelchair users, which does not include users who can be moved with the
aid of other persons only (i.e. “passive” wheelchair users).
32 W.J. Pfeil
themselves even if they were not with disability. Pursuant to the aforementioned
provision of § 4 Para. 3 BPGG, the difference is to be calculated in such cases and
only those care needs are to be taken into the equation which exceed the needs
typical of children and adolescents of the same age but without disability. In
practice, average values apply, and benchmark criteria are factors like age or,
respectively, tasks that can be carried out independently at a particular age; account
is also taken of the question whether a task needs to be carried out more often owing
to the disability, or whether the disability makes the performance of such a task
more difficult.40
2.1.5 Procedure and Granting of Benefits
As a rule, long-term care allowance is granted only upon application. The latter can
be filed by persons dependent on long-term care or their legal representatives or,
respectively, trustees; and even, in some cases, by family members or members of
the same household (cf. § 25 BPGG). According to Para. 3 of this provision, also a
social welfare provider can file the application for care allowance on behalf of the
person dependent on it if the latter is accommodated in an institution at the expense
of the former (see below, respectively Sect. 2.2.2).
The competent decision-making authority must then arrange for the respective
assessment which basically is to be carried out by medical appraisers. The assess-
ment requires consideration of the applicable documentation of care service provi-
sion (to be carried out by professional care personnel in line with professional law);
if needed, experts from other fields (e.g. special education or psychotherapy) may
be asked for counsel regarding the assessment. Applications for a new evaluation of
care needs with the purpose of increasing the currently granted care allowance may
also be assessed by graduated nursing personnel in accordance with GuKG (cf. §
25a BPGG in connection with § 8 EinstV). During the assessment, the person
dependent on long-term care must cooperate in an appropriate way (cf. §
26 BPGG), but can ask a trusted person to be present.
The competent decision-making authority is obliged to issue a notification in
writing within 6 months (cf. §§ 27, 28 BPGG) which generally has immediate legal
validity, unless it is declared void due to objections to the decision in terms of a
complaint filed before the Labour and Social Court. In any event, the level of care
allowance granted by the decision-making authority remains protected.41 Further-
more, an entirely new procedure is to be opened according to which, above all, also
new assessments will be necessary for the case evaluation.
40
For more details see meanwhile the specific provisions under the Kindereinstufungsverordnung
(BGBl II 2016/236).
41
This prohibition of reducing the level of protection is reached by the obligation to “irrevocably
recognise” the claim to benefits once it has been admitted by means of an official decision, cf. §
71 Para. 2 of the Labour and Social Courts Act (Arbeits- und Sozialgerichtsgesetz ASGG, BGBl
1985/104 as last amended by BGBl I 2016/44).
Once care allowance has been granted, the beneficiary is entitled to payments
with effect from the first day of the month following the application; modifications
to the case or discontinuation of eligibility will also generally take effect as of the
first day of the month following the respective decision (cf. § 9 BPGG). As a rule,
payment is made to the beneficiary’s account on a monthly basis with retroactive
effect (cf. §§ 17 f. BPGG). Care allowance is subject neither to income tax
(§ 21 BPGG) nor counts as insurable income within the scope of social insurance.
As indicated before (see above Sect. 2.1.3), care allowance payments are
suspended for as long as service provision is guaranteed through other means,
e.g. during inpatient treatment in a medical facility or a term of imprisonment
(cf. § 12 BPGG). In other respects, (partial) conversion into benefits in kind is
provided for on two conditions only:
First, if the decision-making authority grants benefits in kind as a substitute for
cash benefits in accordance with § 20 BPGG, which will be based on the assumption
that the targeted purpose cannot be achieved by means of the care allowance; within
the framework of the right of review of the decision-making authority the matter
can be investigated (cf. § 33b BPGG). In practice, the risk stipulated in this context,
namely any other form of self-neglect of the person dependent on care, is not
deemed an issue. Substitution of cash benefits with benefits in kind is, however, also
not likely to be effected due to the circumstance that care allowance providers (see
below Sect. 2.1.6) usually do not have a sufficient range of benefits in kind to offer
in return that would be readily available.
Benefits of this sort are, rather, organised and partly also financed (for more
detail see Sect. 2.2.1) by the provinces (and municipalities). This particularly also
holds true for inpatient facilities providing long-term care and assistance services
such as nursing homes, but also for shared accommodation for persons with
disabilities. Even if the costs of the actual accommodation and care services are,
at least in part, borne by a public entity at province level, this second variant of a
“conversion” of cash benefits into benefits in kind effects a “cession of rights” in
which a part (limited to 80%) of the care allowance entitlement is conveyed to the
public entity (§ 13 BPGG). The person dependent on care is, in such a case, left with
pocket money amounting to a mere 10% of the care allowance granted in level
3, i.e. currently € 45.18 per month. Thus, if a person is needy not only in social but
also economic terms, the possibility of free choice as postulated in § 1 BPGG is
considerably limited and even barred due to the eating up of the person’s income
and assets (see below Sect. 2.2.2).
2.1.6 Competent Funding Entities
As mentioned before, care allowance is financed from general tax revenues. The
main funding body is therefore the State. Yet, in the execution of BPGG, the latter
34 W.J. Pfeil
does not (any longer)42 resort to federal authorities, but to help from social
insurance providers (cf. § 22 BPGG), particularly from the Austrian Pension
Insurance Institution [Pensionsversicherungsanstalt], which is usually responsible
for the administration of pension insurance to employed persons (with the excep-
tion of railway workers and miners) (cf. § 25 ASVG). Referred to as decision
makers, these institutions are reimbursed by the State not only for the sums of care
allowance paid out by them, but also for any expenses related to this procedure
(cf. § 23 BPGG).43
2.2 Benefits in Kind
2.2.1 Overview
Unlike with care allowance, the provision of benefits in kind for persons dependent
on long-term care is not governed by a uniform regime. The preconditions provided
for at Province level show structural similarities, but sometimes differ considerably
when it comes to details. What is more, often no legal rights can be derived in this
context, and the granting of services is effected—unlike with care allowance—with
a view to the income or at least until the end of 2017 (see below Sect. 2.2.2.) assets
of persons dependent on care and of their relatives.
As to content, however, a consistent differentiation can be made between
services provided in the home environment of the person dependent on care and
services provided in care facilities or similar institutions. The former are often
subsumed under the collective term of “social care services” or “mobile services”,
which include, for instance, household assistance, domiciliary nursing care or
mobile hospice care (as explicitly laid down in § 3 Para. 4 PFG).44 Inpatient care
and assistance services, however, include “hotel services” and long-term care as
well as assistance services in facilities specifically established for this purpose with
continuous stand-by presence of personnel (cf. § 3 Para 5 PFG). The special forms
of inpatient care services as recognised by PFG comprise semi-residential care,
short-term care in inpatient facilities, and alternative living arrangements. Semi-
residential care comprises a range of services offered in the context of structured
daytime assistance (at least half-day); short-term care refers to fixed-term
42
The last year during which specific responsibilities were assigned to an authority, in this case to
the Federal Social Office, which is responsible for smaller groups of persons, was 2013.
43
In 2016, this reimbursement amounted to € 2.359 million, of which € 2.313 million were spent
on care allowances; Die € osterreichische Sozialversicherung in Zahlen, 39th edn., p. 27.
44
The terminology of PFG does not necessarily coincide with that contained in the legal provisions
of the respective Austrian state. Yet, since the definitions refer to binding provisions on a
nationwide basis for the granting of targeted contributions paid by the State to the individual
federal states, they are also deemed to be appropriate as the common foundation in the context
at hand.
Table 2 Recipients of care services offered at prinvial level and expenditure
Net Net Net Net
Mobile expenditure Inpatient expenditure Semiresidential expenditure Short-term expenditure Total net
Province services (€) services (€) services (€) care (€) expenditure (€)
Burgenland 5007 8.67 million 2212 32.51 221 0.56 million 203 0.39 million 42.13 million
million
Carinthia 10,402 25.98 7066 101.16 256 0.40 million 460 0.85 million 128.39 million
million million
Lower 30,784 58.71 12,195 180.35 549 0.97 million 3852 7.2 million 247.23 million
Austria million million
Upper 20,791 37.32 12,810 180,39 1362 1.94 million 1567 0.23 million 219.88 million
Austria million million
Salzburg 7250 21.24 4446 57.09 846 1.14 million 465 0.26 million 79.73 million
million million
Styria 23,313 39.25 14,514 242.06 833 2.48 million No No 283.79 million
million million information information
Tyrol 10,646 31.10 6554 81.60 658 1.40 million 237 0.82 million 114.92 million
million million
Vorarlberg 8340 11.90 2345 56.62 511 0.27 million 439 0.78 million 69.57 million
Benefit Structures for Persons Dependent on Long-Term Care in Austria
million million
Vienna 29,190 152.29 13,490 499.76 2190 14.56 1080 7.13 million 673.74 million
million million million
Total 145,723 386.46 75,632 1431.54 7426 23.72 8303 17.66 1859.38 million
million million million million
35
36 W.J. Pfeil
accommodation in a care facility (usually for a period not exceeding 3 months) with
meals, care services and assistance included; alternative living arrangement means
sheltered living for persons who are dependent on care in general but not on
continuous inpatient care (cf. for details § 3 Paras. 4 to 10 PFG).45
All these services are listed more or less explicitly in the service catalogues of
the social assistance or, respectively, minimum subsistence laws of the individual
Austrian provinces.46 The services are always funded by the respective state
(sometimes even in combination with other funding); in some cases collaboration
is also sought from the municipalities or their (legal or voluntary) associations of
local authorities in order for them to share the costs or provide the relevant services
themselves. However, neither the provinces nor the municipalities will necessarily
provide the services themselves, but often delegate the tasks to institutions outside
the public administration (e.g. “Fonds Soziales Wien”), or deploy—usually
contracted—private providers to perform the services; these providers are very
often charitable organisations or, increasingly so, commercial businesses.
Purely commercial institutions that occupy an independent market (segment) for
care and assistance services are the exception (e.g. in the form of “retirement
homes”). Much more common are situations where persons dependent on long-
term care, or their relatives, resort to services offered by public providers; in this
setting, they do not claim social benefits—apart from care allowance—but (more or
less) cover the costs from their own funds. These “self-payers” are not included in
the Table 2 below. The latter contains the number of persons who, according to the
2012 statistics of the respective province47, resorted to the most relevant forms of
services offered, and also states the net expenditure48 involved.
2.2.2 Structural Commonalities
Given the differences between the individual provinces, some structural common-
alities shall be pointed out instead of going into detail.
45
See below Sect. 3.2 for benefits that also come into question in terms of targeted contributions in
the context of case and care management schemes pursuant to § 3 Para. 1 Z 5 and Para. 9 PFG.
46
As part of the introduction of a needs-based guaranteed minimum income, which has basically
replaced the previous benefits (especially cash benefits) securing the basic subsistence in the
context of social assistance, some federal states have effected a distinction between the guaranteed
minimum income and social assistance benefits (particularly for persons dependent on long-term
care); other states have taken integrative measures with a view to both theses areas within the
framework of a comprehensive law on a guaranteed minimum income, cf. for more detail Mayer
and Pfeil (2012b), pp. 265 f.
47
Summarised in BMASK (ed.), Österreichischer Pflegevorsorgebericht 2015 (2016) pp. 117 et
subseq. As data are not always comparable without condition, the amounts listed in the table
should only be understood as approximate values.
48
I.e. full/gross expenditures minus contributions and co-payments, in €.
First, it must be noted that at province level, individual descriptions of the

preconditions defining “long-term care dependency” can be found; de facto, how-
ever, these are regularly based on the same criteria as categorisation into care levels
for the determination of care allowance. In some cases, benefits in kind (particularly
in the context of inpatient care) are granted only from a certain care level up
(e.g. care level 3). In other cases, additional preconditions are stipulated: inpatient
care in a nursing home, for instance, is in some provinces taken into consideration
only if—for reasons related to the social or family situation etc.—no other means of
care is available. In some cases, mobile services are even given explicit priority
over inpatient services. On the other hand, certain provinces offer persons depen-
dent on care some form of “right to free choice”, which shall be decisive in cases of
doubt and/or cost neutrality.
Both this priority and the “right to free choice” are always subject to service
availability. In order to guarantee these services, the individual provinces have
entered into the obligation, by way of the 1993 Long-Term Care Agreement, to
establish and continuously further develop plans indicating the various needs and
progresses. As the establishment of the care fund shows, this has certainly not
resulted in the elimination of structural deficits and regional differences as regards
service coverage and quality.
The (un-)availability of certain services de facto also restricts the enforcement of
service provision in those provinces which have allowed for legal entitlements to
(at least certain) benefits in kind for persons dependent on long-term care.49,50 In
most provinces, however, such legal entitlements do not exist a priori. Quite often
this means that those affected arrange for the desired care and assistance services
through other sources, which in turn raises not only quality issues, but has in the
past also contributed to the fact that care allowance was also used for the payment
of illegal care services (see below Sect. 2.3.3).
Care allowance is, before all other means, to be taken into account when it comes
to calculating the payment or, respectively, co-payment for the utilisation of long-
term care benefits in kind. While with a view to inpatient services this is—as
mentioned before (in Sect. 2.1.5)—effected by way of “cession of rights” pursuant
to § 13 BPGG, persons receiving care in their homes must use their care allowance
mainly to pay for services offered by the respective province. In both cases, the
person in need of care is left with little scope for choice; thus, expectations for
greater flexibility are met only to a limited extent. This holds true even more for
49
What is more, the procedural principle of discretion—a common element in social security
law—leaves the authority with a broad scope as regards the selection of granted benefits, as the law
regularly obliges the authority to provide coverage for needs (merely) in a rather abstract manner.
50
Any potential legal protection would also be treated under separate terms: Appeals against legal
decisions on long-term care benefits in kind are not to be treated by the social courts (who are
actually in charge of granting long-term care allowance) but by means of successive stages of
administrative appeals which have, so far, been treated by higher-ranking federal state author-
ities and, at most, by the Supreme Administrative Court, and which would as of 2014 generally be
the responsibility of the newly established administrative courts of the various federal states.
38 W.J. Pfeil
socially and economically weaker persons, even though payment or, respectively,
co-payment is graded pursuant to social factors in accordance with the provision of
the Long-Term Care Agreement.51 Gradation is effected in such a way that, for one
thing, a certain proportion of the income is not taken into account, since it is
intended to secure the person’s subsistence as well as that of dependent family
members; for another, there is an upper limit for “personal contributions”.
Consistent differentiation is made, however, between mobile and inpatient
benefits in kind for long-term care purposes. As a rule, mobile care does not require
patients to use up their assets in exchange for services; further, the circle of relatives
taken into consideration for co-payments to or reimbursement of benefits is limited
to spouses or common-law partners (of the same sex) or, in some cases, parents
liable for minor children. As to inpatient services, however, more stringent rules
apply which are likely to have been designed to emphasise the aforementioned
priority of mobile over inpatient care52 but, above all, refer to the considerably
higher costs incurred for inpatient care53:
In cases where inpatient care is granted at the full or partial expense of a social
assistance provider, it is not only a cession of rights that comes into play, with an
proportion of (up to) 80% of the patient’s care allowance being automatically
assigned, and with an analogue procedure being applied for cash benefits claimable
from statutory pension insurance (cf. only § 324 Para. 3 ASVG). Beyond that,
persons dependent on long-term care are, as a rule, asked to priorly use up other
income and, above all, also assets. If the latter cannot be accessed, e.g. in cases
where family members live in a house owned by the patient, claims for compen-
sation have become valid until end of 2017 and the mortgage has been usually
coercively transferred. If the estate is sold or—in the case of the patient’s death—
ownership is transferred, the buyers or, respectively, heirs until end of 2017 have
been obliged to pay compensation.54 If assets are transferred to circumvent the
obligation to use up one’s own assets or, respectively, pay a compensation from
one’s inheritance, claims for compensation can in most cases even be filed by the
social assistance provider from persons who have been transferred, within a spec-
ified period of time before the provision of inpatient care (or after, or during this
period), certain assets without adequate consideration having been furnished in
return. All those provisions have been cancelled by federal constitutional law (laid
down in § 330a ASVG) which has been set in force on 1 Jan 2018. So all kinds of
compensation payments based on properties or assets have been banned as long as
51
Its Art. 3 Para. 4 requires that “social aspects be taken into account” when it comes to levying
co-payments.
52
The listed figures show that on average, in comparison to inpatient services, mobile services are
resorted to by twice as many persons.
53
Already for the lower care levels and in nursing homes with an inexpensive cost structure, the
expenses amount to a minimum of € 3000 per month.
54
Since no further inheritance tax or capital tax is levied in Austria, seizure of a person’s assets
is—only in the case of neediness or personal hardship—particularly disputed; cf. only Pfeil (2013),
pp. 83 ff.
the compensation is claimed for stationary care granted in 2017 or earlier. Never-
theless contributions are also demanded from relatives of the person dependent on
care within the context of their obligation to provide maintenance: This is again
limited to spouses or common-law partners (of the same sex) or, if need be, parents
liable to pay for minor children. The amount due varies according to social factors
(income, employment status etc.).
Long-term care benefits in kind provided by the provinces or municipalities are
also financed from general tax revenues. The financial burden incurred by the
smaller regional administrative bodies have in 2011 resulted in the establishment
of the abovementioned long-term care fund (see Sect. 1), which is mainly endowed
with federal funds and from which targeted subsidies are distributed to the prov-
inces and municipalities.
2.3 Other Services and Arrangements
2.3.1 General Issues
It is also mainly the responsibility of the individual provinces to disburse benefits

for the support of persons who provide informal care to relatives, friends or
neighbours. Such support especially includes information and counselling services,
attendance or supervision services, as well as respite services, particularly in the
form of short-term care in nursing homes during holidays or times when the
caregiver is unable to provide care. No legal claims can be derived from any of
these measures. Most of these services are free of charge, with the exception of
short-term care, which is regulated in a similar way as semi-residential and inpa-
tient services as regards co-payments and contributions. Unfortunately, no exact
figures generally exist with regard to this range of services and the effects they may
have.
There are, however, two further provisions accompanying long-term care and
assistance services in the home of the patient that are more feasible; these shall be
described in greater detail below. For both cases, the legal basis is (predominantly)
federal law. One issue is the protection of caregivers under social security law; the
other issue involves the various measures enabling or simplifying the designing of
arrangements for comprehensive domiciliary care, particularly in the form of “24-
hour care”.
2.3.2 Protection of Caregivers Under Social Security Law
In Art. 7 of the Long-Term Care Agreement the Federal State had already in 1993—
in accordance with its responsibility for this matter on the basis of a sharing out of
competences in accordance with the Constitution—undertaken the commitment to
“facilitate protection to caregivers under social security law”. Corresponding
40 W.J. Pfeil
provisions have meanwhile been introduced into nearly all branches of the Austrian
social insurance system. As the latter still follows the principle of social security
being linked primarily to gainful activity, the main task is to provide coverage also
to non-professional caregivers or persons who provide care services to long-term
care patients or their relatives outside the conventional employment setting that is
subject to compulsory insurance.
As for a differentiation according to the various insurance branches, the first
branch to be investigated shall be the statutory health insurance. Basically health
insurance is, in the first place, granted to employed or self-employed persons, as
well as to recipients of social benefits that act as loss-of-income compensation
(e.g. pension, unemployment benefits, childcare allowance). Persons who provide
care services within the context of employment that is not subject to insurance
contributions and who do not receive any of the abovementioned benefits to
compensate for loss of income are unlikely to be able to pursue a gainful activity
that offers health insurance. Health insurance protection is only granted to persons
whose status is that of a relative of an insured person. This is the case for spouses or
registered partners, for own or adopted children, under certain conditions also for
step-, grand- or foster children, as well as for common-law spouses of the insured
person (cf. § 123 ASVG).
In this context, two privileges are applicable. For one, pursuant to Para. 7b leg.
cit. the relative status further applies to persons who provide care to an insuree
entitled to care allowance to the extent of care level 3 or higher in the home of the
latter, with the focus being on the caregiver’s (non-remunerated) manpower. The
status applies if the caregiver is a relative of or related by marriage to the insuree in
the direct line or up to the fourth degree in the collateral line, or can be considered
as the patient’s adoptive, step or foster parents.
The second privilege in terms of health insurance law builds on this provision:
No additional contribution needs to be paid for (close or distant) relatives registered
in this setting, while a certain sum would usually have to be paid by insurees
(amounting to 3.4% of their gross income) who wish to have their relatives covered
by statutory health insurance (cf. § 51d ASVG, particularly Para. 3 Z 1).55
Due to its focus on accidents at work and occupational diseases the statutory
accident insurance does not provide for any special regulations, meaning that it only
provides for long-term care benefits and assistance services within the framework
of gainful employment. The same applies for unemployment insurance; here,
however, the time frames for fulfilment of the contribution periods necessary for
entitlement to benefits can be stretched further into the past in cases where a person
has provided care and assistance services to a relative. The minimum period may be
extended if long-term care is provided to a close relative entitled to care allowance
to a minimum extent of care level 3, if during the period in question coverage in
terms of pension insurance had been taken out (cf. § 15 Para. 3 Z 4 or, respectively,
55
Z 3 of this regulation contains a further exemption from the obligation for relatives to make
co-payments if they are entitled to care allowance corresponding to care level 3 or higher.
5 AlVG56). Periods during which long-term care and assistance services are pro-
vided shall at least not have adverse effects for the caregiver as regards entitlements
under the unemployment insurance system.
Within the context of pension insurance, however, several privileges apply.57
They first and foremost apply to persons who, due to their providing long-term care
to a close relative entitled to care allowance to a minimum extent of care level
3, have resigned from their gainful activity (and have thus dropped out of a statutory
insurance in the pension scheme and applied for continued optional insurance; cf. §
17 ASVG). If the provision of long-term care demands the entire working time of
the caregiver, the State pays the pension insurance contributions on behalf of the
former during the relevant period (cf. § 77 Para. 6 ASVG). A similar rule applies—
even without prior coverage through a statutory insurance—for a (grand-, adoptive,
step or foster) parent in the context of self-insurance in periods during which care is
provided to a child with disability (§ 18a ASVG). In order to fulfil the credited
period for pension insurance, the Austrian Family Compensation Fund pays the
contributions in full on behalf of the caregiver (cf. § 77 Para. 7 ASVG).
Self-insurance is considerably more favourable in periods during which long-
term care is provided to close relatives pursuant to § 18b ASVG, as the State pays
the pension insurance contributions in full (§ 77 Abs 8 ASVG). For one thing, the
circle of persons in question is more broadly defined than in the other two cases and
is most probably to be considered within the meaning of the abovementioned
privilege with a view to health insurance pursuant to § 123 Para. 7b ASVG. For
another, in this context the condition is defined as merely a “considerable demand
for the caregiver’s working time”, meaning that part-time gainful activity on the
side would be possible; thus, this self-insurance is the only form that can—apart
from statutory insurance—be taken into consideration (and therefore ensures higher
pension entitlements later in life).58
On the whole it can be stated, therefore, that social security protection is
relatively comprehensive with a view to persons who provide long-term care
services not only on a temporary basis. In cases where long-term care is provided
to a relative, the caregiver’s health or pension insurance protection is, as a rule,
neither jeopardized or does it become void on grounds of an interruption or
56
Austrian Unemployment Insurance Act (Arbeitslosenversicherungsgesetz), BGBl 1977/609 as
last amended by BGBl I 2017/38.
57
For greater detail, see Pfeil W J in: Mosler et al. (2015), §§ 17, 18a, 18b bzw 77 ASVG.
58
In this connection, reference must also be made to the possibility as of 2014 to suspend one’s
employment for one to three months (“Pflegekarenz”, i.e. care leave) due to care obligations for a
close relative (which is, however, not a claim enforceable from the employer), or to arrange for a
reduction of working hours for the same period (“Pflegeteilzeit”, i.e. part-time work for care
purposes), cf. §§ 14c and 14d of “Arbeitsvertragsrechts-Anpassungsgesetz”, i.e. the Austrian law
amending the labour contract law (AVRAG, BGBl 1993/459 as last amended by BGBl I 2017/30),
concerning this see also below Sect. 3.5.
42 W.J. Pfeil
reduction of a gainful activity subject to mandatory insurance. The privileges

described regularly depend only on the appropriate application and documentation
of required conditions; yet, as to the matter per se, they are secured by way of legal
claims. What can be criticised here, however, is the minimum requirement for care
level 3 to be fulfilled, meaning that certain deficiencies as to the categorisation of
care levels, e.g. with a view to demential diseases or other psychological diseases,
are maintained (see also below Sect. 3.1).
2.3.3 24-Hour Care
It was most likely these weaknesses, that have in many cases led to the searching
and also finding of arrangements beyond the public service range for persons in
need of long-term care. As care allowance is “neutral” in this respect, it can also be
used to pay for illegal services. Before the EU’s enlargement to the East, especially
people from the (north-) eastern states adjacent to Austria were taken into account
for the delivery of personal and long-term care. Also here, no precise figures are
available. The most reliable estimates quoted a figure of about 30,000 households
drawing on this kind of long-term care.59
This originally illegal situation was “legitimised” in several steps. First,
nationals from enlargement states to whom the freedom of movement for workers
did not yet apply were granted an exception concerning the restriction on foreign
employment (at the time in terms of an official work permit). Initially, this excep-
tion was limited to assistance and long-term care services delivered to persons
being granted care allowance to the extent of at least care level 3. Meanwhile, any
entitlement to care allowance is sufficient, with employment also having become
possible in a general care or long-term care facility (i.e. not only in the home of the
person in need of long-term care or his/her relatives), provided that this entails only
one mandatory insurance for all social insurance branches/compulsory insurance in
all branches of the social security scheme results from this work relationship.60
Removing the obstacle to foreign employment, which was at last only relevant
for long-term caregivers from Romania61, did in no way change the regulatory
obligation of persons in need of long-term care or their relatives in their capacity as
employers to register caregivers under the social security scheme and to pay
contributions and respective taxes on their behalf. By way of an independent
Constitutional Act on Long-Term Care (BGBl I 2008/43) this obligation was
abolished on grounds of premature expiration, and the associated administrative
penal provisions—as well as those regarding non-compliance with certain labour
law regulations—were suspended in cases where long-term care had been provided
59
zu ergänzen.
60
Cf. § 1 Z 6 “Ausländerbeschäftigungsverordnung” (i.e. regulation of employment of foreigners),
BGBl 1990/609 as last amended by BGBl II 2017/257.
61
Since 2014 also this restriction on the freedom of movement has ceased to apply.
before 2008 or where the care activity had been registered by 30 June 2008 and thus
been made legitimate. This kind of “amnesty” naturally only referred to the public
sector; civil or labour law claims on the part of caregivers were thereby not
excluded.62
This problem, which objectively complicated the claiming of paid long-term
care services in the home environment in that it increased the costs for the former63,
was subsequently addressed at two levels with a view to the field of “24-hour care”.
For one thing, a “special employment relationship” was created for care personnel
and long-term caregivers; for another, an opportunity was offered to have these
services provided also by relatively unqualified personnel64 within the context of
self-employment. However, both concepts are dubious—and not only with respect
to legal policy. The special labour law provisions are contained in the Act on
In-Home Care (HBeG). § 1 Para. 2 of this Act assumes, among other things, that
the person dependent on care is entitled to care allowance according to at least level
3 (in the case of constant need due to dementia: level 1) and that the caregiver
provides care for a maximum of 14 days followed by the same period of
uninterrupted free time, and lives in the household of the person to be cared for
during the working period. As a rule, the working time must not exceed 128 h
within 2 weeks; further periods of availability, however, spent by the carer in
her/his room or in its immediate vicinity and during which the carer can dispose
freely of her/his time are not regarded as working time (cf. § 3 Para. 2 HBeG). In
view of the need for 24-hour care it is, however, difficult to imagine that no care has
to be provided during these periods and that the periods of availability in the
immediate vicinity of the place where care is provided should not be accounted.65
Practically, “domiciliary care” provided by employees does not play any role, as
in nearly all cases66 the self-employed option is selected. This option may be found
in the Austrian Trade Regulation Act (GewO) Pursuant to § 159 GewO, this activity
particularly includes household-related services (like preparing a meal, doing the
shopping, cleaning), assistance with the activities of daily living or with mobility,
and hence mainly activities that are also of importance with a view to care
allowance assessments. In addition, further care activities by qualified personnel
have to be mentioned, such as assistance with medication or changing incontinence
products, which in the absence of the special regulations contained in § 3b of the
Austrian Health and Nursing Act (GuKG) would be reserved for health and nursing
62
De facto it is, however, unlikely that such claims have been asserted.
63
This is especially due to labour law entitlements to continued remuneration on account of illness
or holidays, restrictions on working time, regulations on minimum wages, and employer contri-
butions to social insurance.
64
Health and nursing care personnel had, already previously, been authorised to work on a self-
employed basis (cf. § 35 GuKG).
65
Cf. only Pfeil (2008), pp. 95 ff.
66
Cf. Krispl (2011), p. 47; according to BMASK, about 44,200 active trade licenses are currently
registered with respect to the provision of personal care.
44 W.J. Pfeil
care staff. These regulations are also valid for non-self-employed carers according
to HBeG.
In this context it is noteworthy that the differentiation—based on professional
law—between household-related services and (rather) medical/therapeutic activi-
ties also resulted in a terminological distinction which has so far been of little
significance to long-term care law. The activities that are decisive for care allow-
ance assessments are now more often—though not consistently—referred to as
“personal care” (“Betreuung”) while “long-term care” (“Pflege”) rather includes
the activities carried out by the health care and nursing care professions. Apart from
this—already per se unfortunate confusion of terms—it is to be criticised in this
context, of course, that the separation between the “social” and the “health-care
sector” is transported to another level where it is likely to become consolidated.67
This is all the more regrettable as it impedes the further development of an overall
system and as this differentiation quite obviously not so much serves the interests of
those in need of personal or long-term care services as a certain political attitude of
individual occupational groups.
But with the aid of special provisions such as the aforementioned § 3b GuKG,
the legislator has succeeded in eliminating a vulnerable point concerning the
regulations of “24-hour care”. However, what remains unsolved is another problem
that is de facto much more serious than the regulations concerning the “special
employment relationship” according to HBeG—which are difficult to justify objec-
tively. The coexistence of (non-self-employed) domiciliary care and (self-
employed) personal care—and especially the political “marketing” for both
models—gives the impression that any of the options can be chosen ad libitum.
This is, however, not the case when considering the typical features of an employ-
ment relationship pursuant to Austrian labour law: The fact that the caregiver is tied
to a particular workplace (home of the person dependent on care), to specified
working hours (including de facto 24-hour availability on top of that) and to
content-related requirements (according to the needs and wishes of the person to
be cared for), and the fact that there is next to no scope for action on the part of the
caregiver are arguments against a self-employed activity68; much rather, from a
legal point of view, an employment relationship will often be the correct option.
That the result is not primarily in the interest of the persons in need of long-term
or personal care or that of their relatives is easy to see. Also the “public interest”
seems to give preference to the option of self-employed care provision, for which
only half as much financial support is necessary as for services delivered by
employed persons. This follows from the subsidy guidelines69, which are based
67
The following title is symptomatic of this dilemma: “Der Betreuer pflegt (nicht)”, cf. Pruckner
(2008), pp. 4 ff.
68
The arguments raised in response to that, cf. only Greifeneder and Liebhart (2013), marginal
note 1159) may apply in individual cases, they are, however, not convincing as a general solution,
cf. once more Pfeil (2008), pp. 99 ff.
69
Cf. https://www.sozialministerium.at/cms/site/attachments/7/1/5/CH3434/CMS1499151087551/
barrierefrei-richtlinien_zur_unterstuetzung_der_24-stunden-betreuung.pdf.
on § 21 and § 21b BPGG and regulate the requirements for benefits from the support
fund for persons with disabilities. The guidelines show that a monthly support of €
1100 is granted for two employed caregivers70, whereas for two self-employed
caregivers a monthly amount of only € 550 is granted. On the other hand, it can be
seen that the provisions for being awarded a subsidy are much more generous than
for the local cost contributions or reimbursements for the delivery of benefits in
kind. Thus, a subsidy is granted up to a monthly net income of € 2500 of the person
in need of long-term care, plus an additional € 400 for each of his/her dependants,71
with neither the relatives’ income nor the use of assets being taken into account.
Of course, this may be seen as an incentive for keeping persons in need of long-
term care in their familiar domestic surroundings for as long as possible. This
incentive has no effect, however, in cases where the social and familiar environ-
ment for such an arrangement of personal or long-term care is non-existent. Here,
the provisions on 24-hour care even effect a selection according to social and
economic circumstances, as especially those persons and families are excluded
who do not have sufficient living space to accommodate a caregiver on a permanent
basis. That these persons can usually only opt for either care provided by their
families or in a nursing home creates a huge social imbalance.
Such an imbalance also becomes apparent when considering who actually pro-
vides the “24-hour care”, i.e. predominantly women—from countries with a poor
labour market or income situation. The objective need for carers is high, and it is
still going to increase. The solution found so far has partly helped cover this need
and has even brought about a comprehensive “legalisation” of the current practice.
There is no doubt that this meets the interests of particularly vulnerable persons
(and their relatives), albeit mainly at the expense of other equally vulnerable
persons who are subjected to an unobjective special employment relationship
(regarding working time) with low wages, or to ostensible self-employment without
an entitlement to minimum wages.
3 Fundamental Aspects Regarding an Appraisal
After all this, a certain ambivalence of the Austrian system becomes apparent
regarding the coverage of the risk of long-term care or, respectively, long-term
care dependency. On the one hand, it is true that there are highly developed
elements showing comparatively few potential trouble spots; on the other hand,
there still remain some shortcomings and incoherencies. As agreed upon with the
70
According to the model on which the HBeG is based stating that 2 weeks of work are to be
followed by 2 weeks of free time so that continuous care is generally guaranteed by two persons.
71
By comparison, the average old age pension from the pension insurance amounted to a gross
total of € 1,254 at the end of 2016 (Die €
osterreichische Sozialversicherung in Zahlen, 39th edn.,
p. 19).
46 W.J. Pfeil
editors, an effort shall be made for an appraisal; the benchmark set for this purpose
is ultimately the question to what extent the needs of long-term care are adequately
met in view of a an increasingly ageing population, and what incentives are
provided for the functioning of the system. To this end, at least the following
aspects seem to be of major importance:
3.1 An Independent Social Risk Covered by Benefits

and Services of a Universal Nature
In Austria, long-term care dependency has been recognised as an independent

social risk that was decidedly standardised “transversely” to other risks like sick-
ness, old age, invalidity or disability. This has the advantage that the specific
benefits and services for persons in need of long-term care can be provided,
whatever their situation and irrespective of the competences of other systems.
Hence, the individual need is to the fore, while the underlying cause is just as
irrelevant as the actual or potential opportunity to (at least partly) meet needs
otherwise. In this respect, it makes sense at least for long-term care benefits not
to depend on the income and asset situation of the person dependent on care or
his/her (close) relatives.
The fact that benefits and services are exclusively financed through tax revenues
guarantees independence from prior insurance periods or insurance contributions.
Thus, also persons are granted benefits and services who are not or insufficiently
covered by the social insurance system due to unprotected employment or total
absence thereof.
However, this universal approach also has some drawbacks. On the one hand,
the endeavour to identify all persons in need of long-term care involves the risk that
not all needs and circumstances of life may be given equal consideration. This
applies both to care allowance and to benefits in kind. The reason is that in both
cases the cause and context of long-term care dependency cannot be completely
ignored. Even if many of the needs regarding everyday life are similar in nature, it
seems inappropriate to provide benefits and services on an equal basis, e.g. for
elderly and frail persons, persons with dementia, gainfully employed persons in
wheelchairs and children with severe disabilities alike.
While benefits in kind are indeed offered in a wide range of variants, with the
main disadvantage being that this range is not sufficient or, respectively, that there
are too many regional discrepancies in the distribution72, the problems involved in
the care allowance approach are to be expounded from several aspects in this
regard: Seeking to improve the opportunities for self-determination by granting
72
The requirement and development plans obligatory for the provinces in line with the Long-Term
Care Agreement of 1993 were doubtlessly entered into with ambition, but in some cases were
subsequently merely perpetuated or “adjusted” to the budgetary possibilities.
cash benefits unconditionally assumes that, in fact, various options objectively exist
regarding the coverage of needs, and that the recipients are also subjectively able to
make use of them. The first precondition requires a needs-based, small-scale range
of professional services, either publicly organised or freely accessible on the market
(see for this Sect. 3.2 below), and arrangements to promote or facilitate informal
long-term care—irrespective of care allowance (see Sect. 3.5 below). The second
precondition places high demands on the person in need of care as he or she often
benefits from care allowance only indirectly, since care allowance, to a consider-
able extent, represents a recompense for the relatives’ hardships and worries.
This is especially true for those persons in need of care who fit the classification
criteria for care allowance only in part like, for instance, children with disabilities or
persons with dementia or similar psychological illnesses. Indeed, hardship allow-
ances slightly helped “remedy” the situation (see Sect. 2.1.2 above), and also the
above-mentioned placing of care level 1 in the case of dementia at an equal level
with some areas of care level 3 points to the legislator’s discomfort in this respect.
Nevertheless, the unconditional granting of cash benefits seems to be less appro-
priate here than in other contexts.
3.2 Cash Benefits and Benefits in Kind Coming from

Different Sources
The consequence of covering an autonomous social risk irrespective of other social

security branches, of course, also was that, in 1993, the decision makers faced the
alternative of either creating completely new structures for an integrative system or
of linking up to already existing structures. As the “window of opportunity” was
open for a very short period at that time, only the second solution materialised. That
is why, in the case of care allowance, it even took until 2012 before a sole
responsibility on federal level and uniform national regulations were created.73
The simultaneously established care fund might, quite possibly, serve as an instru-
ment to ensure that also benefits in kind are given uniform standards with the same
level of high quality care and availability of coverage all over the country. At
present this fund is, however, neither provided with effective penalty mechanisms
nor with an endowment that would suffice to overcome the differences between the
provinces.
The differences (see Sect. 2.2 above) relate to the content of benefits and
services, the concentration of service provision, as well as to the conditions and
the overall framework for their use. In this context, the fact that the provision of
73
That this responsibility now concentrates on the pension insurance providers is deemed sensible
in administrative and financial regards, but will not ease the mentioned “problem of uniformity” as
it is difficult to see why a pension insurance institution should be the “right” provider of benefits
and services for children or gainfully employed adults in need of care due to an impairment.
48 W.J. Pfeil
Table 3 Case and care management: Recipients and expenditure

Lower Upper
Burgenland Carinthia Austria Austria Salzburg Styria Tyrol Vorarlberg Vienna
Persons Not 1,918 21,565 10,849 3,268 2,313 6,570 1,471 40,660
provided care to specified
Net 0.44 m 1.87 m 1.96 m 0.88 m — 0.5 m 1.6 m 5.32 m
expenditure (€)
Recipients of care 18,266 34,653 89,629 70,424 25,435 79,221 30,982 17,135 84,659
allowance
professional services to the recipients of care allowance is widely spread in the

individual provinces, is not due to the varied structuring of the groups of persons in
need of long-term care, and probably also less to cultural particularities or specific
characteristics of the relevant family and social structures.74 According to this very
investigation, 78% of the recipients of cash benefits nationwide—due to a repre-
sentative cross-section sample—have never drawn on professional services. This
justifies the conclusion that care allowance is widely accepted, but it also points to
low trust in benefits in kind and suggests that the services offered are not perceived
to be needs-based and/or affordable.
Without a closer interconnection of cash benefit structures and benefit-in-kind
structures, the recently promoted case and care management75 will only be suc-
cessful to a limited extent. Furthermore, the data from 2015 specified below in
Table 376 suggest that the range of services offered is, in the best case, still in the
process of development, especially when brought into relation to the number of
recipients of care allowances (as of 31 December 2015).
3.3 Still More Dissociation than Coordination
Within the context of the new regulation of long-term care in Austria effective from
1993, the continued division of responsibilities between the Federal Government
and the provinces—which nowadays “only” exists with regard to cash benefits and
benefits in kind—has tended to also intensify other divisions. This is particularly
true for the professional law which falls within the responsibility of the Federal
74
While in the westernmost federal state of Vorarlberg more than 32% of the recipients of care
allowance use professional services at least occasionally, only 13% do so in the easternmost state
of Burgenland, cf. Österreichischer Pflegevorsorgebericht 2015, p. 39.
75
Also for such offers, care allowance provides targeted support from the care fund; according to
Art. 3 Para. 9 this includes: “services 1) regarding social, support and long-term care planning on
the basis of an individual needs assessment, 2) regarding the organisation of the necessary support
and long-term care services and 3) of interface management”.
76
Cf. Österreichischer Pflegevorsorgebericht 2015, pp. 119 et subseq.
Government with regard to “health care” (Art. 10, Para. 1 Z 12 B-VG) and that of
the provinces with regard to the remaining “social domain”.
This problem has already been mentioned just as the differentiation between
illness and long-term care dependency, and this not only with a view to definitions
or benefits and services, but especially to the institutional coverage. Better inter-
connection with the statutory health insurance system (which is regulated under
federal law, to emphasise it once more) will, of course, fail as long as the organi-
sation and the financing of benefits in kind delivered to persons dependent on long-
term and personal care primarily lie with the provinces.
This concept provides for a differentiation, too. While, in former times, the
concept “long-term care” (“Pflege”) was used indiscriminately, and while “nursing
home” (“Pflegeheim”), “long-term care services” (“Pflegedienste”) and especially
“long-term care allowances” (“Pflegegeld”) were rated as unproblematic, we have
recently started to make a sharper—though no uniform77—distinction between
providing “long-term care” (“Pflege”) and “personal assistance” or “personal
care” (“Betreuung”). That is why we have “social care professions”
(“Sozialbetreuungberufe”), “domiciliary services” (“Hausbetreuung”) or “personal
care” (“Personenbetreuung”), etc. Instead of integrative solutions, the trend seems
to be towards segmentation.
3.4 Framework Conditions for Professional Long-Term Care
This differentiation, which is not always based on objective grounds, has partly also
found its continuation in the framework conditions for professional long-term care
and personal assistance. In this context, the division of competences does not only
focus on the professional distinction between “health care” (“Gesundheitspflege”)
and “nursing care” (“Krankenpflege”) or the “social care professions”
(“Sozialbetreuungsberufe”); also the definition and control of quality standards
vary and are not based on a common factor as, for instance, in terms of specifica-
tions laid down in an agreement pursuant to Art. 15a B-VG.
The result is that national uniform standards for long-term care and personal care
in nursing homes apply only in part, especially in regard to the content of nursing
home contracts and the admissibility of restrictions on freedom in such inpatient
facilities (see Sect. 1 above). Defining the content of the requirements that are
authoritative for these facilities and monitoring the former is again the responsibil-
ity of the provinces, however. These provinces have embarked upon quite different
paths, with most of the “nursing home laws” applying to all inpatient long-term care
institutions of the respective federal province, irrespective of whether they are run
77
The “care(!) fund” thus aims at “safeguarding and improving the provision of needs-based
services to persons dependent on long-term care. . .by means of offering needs-oriented and
affordable assistance and long-term care services” (cf. Art. 1 Para. 2 Z 1 PFG).
50 W.J. Pfeil
as a social welfare facility, by a public or a charitable organisation or on a merely

commercial basis. In one province, however, standards have only been established
for such nursing homes which render services in the context of social assistance.78
Beyond the social benefit regulations, however, no legal regulations exist with
regard to the standards for mobile services and control of the latter, with one
exception: the Long-Term Care Act of the province of Salzburg79, which defines
the quality of procedures and infrastructure for practically all long-term care and
personal care services more specifically, and which subjects the providers to official
supervision.
Of course, this supervision not only aims at—as far as can be seen: quite
successful—quality assurance in order to protect the persons who draw on the
relevant services. As a rule, the supervisory authority is the respective provincial
government, and hence the supreme body of the authority which is also responsible
for ensuring the services in question (and their financing—at least in the second
degree). This “dual role”—which de facto exists for nursing homes in all prov-
inces—opens up a means for the respective provinces of applying at least indirect
pressure on the service providers regarding the arrangement of service offers and
especially their reimbursement in terms of contractually determined, partly also
normatively set tariffs.
The comparatively strong position of the provinces and municipalities as the
main financiers for professional long-term care and personal care services also
relativises the fact that the service providers and their employees are, in principle,
subject to minimum labour standards throughout the whole area. These minimum
standards refer not only to the labour laws, but frequently also to the standardised
minimum wages and working times agreed upon by collective bargaining.80
If these providers also deliver services in the context of 24-hour-care, the
minimum standards also apply in this area—in addition to the equally applicable
special employment relationship (regarding working time) pursuant to HBeG for
time worked outside the normal working hours (see Sect. 2.3.3 above). Protection
on the basis of these standards does, however, de facto not materialise as this kind
of personal care is mainly (at least formally) provided by self-employed caregivers.
This “outsourcing” from labour law and the fact that 24-hour-care is almost
exclusively provided by women (who are otherwise unemployed or dependent on
still more precarious employment—especially in other countries) lead to a
78
Cf. again Krauskopf (2012), pp. 359 ff.
79
Salzburger Landesgesetzblatt 2000/52 as last amended by LGBl 2015/47.
80
Some major charitable organisations (like the Red Cross or Caritas) have concluded their own
collective agreements. The other providers of care and long-term care services (and hence—due to
the “outsider effect” established under Art. 12 of the Austrian Labour Constitutional Act [ArbVG,
BGBl 1974/22 as last amended by BGBl I 2017/104] also the persons employed by them) are
either directly covered by the collective agreement (KV) concluded by their employers’ associa-
tion “Sozialwirtschaft Österreich” (in short BAGS-KV); or—as in the case of the remaining
employers of that sector—the regulations of this collective agreement become generally binding
through the official declaration of this KV under Art. 18 ArbVG.
particular propensity for informal long-term care which is to be briefly addressed

once more in the following.
3.5 Framework Conditions for Informal Long-Term Care
If the opposite conclusion is drawn from the latest figures on the provision of
professional services (see Sect. 3.2 above), 80% of all recipients of long-term care
allowance are provided care and assistance exclusively in the family—or perhaps
the neighbourly—setting, if ever. Ensuring such a permanent care situation requires
a whole range of precautionary measures, which, however, only exist in part (see
description above).
While social insurance coverage for family caregivers seems to be largely
developed and fully guaranteed (see Sect. 2.3.2 above)81, there is a lot of
catching-up to do as regards supporting measures, starting from the provision of
professional help in critical situations, including care worker substitution or respite
care services, up to appropriate counselling services.
For caregivers, care allowance represents a major part of their personal income
or at least of the total household income. That this is the purpose of the system as it
is conceived—at least in terms of “dolus eventualis”—is shown by the fact that care
allowance (which since its introduction has never been sufficiently adjusted to
currency devaluation or inflation) can only cover part of the acknowledged and
classified individual need through professional help. But even when considered as a
compensation for the provision of informal long-term care (i.e. without “rising
costs” due to labour law entitlements or employer contributions to social insurance)
care allowance is insufficient to guarantee an adequate household income.82
The natural—and thus often requested—demand for a significant increase in
care allowance rates that does not only compensate for the loss in value would, of
course, raise some fundamental problems, irrespective of the fact that it is scarcely
affordable. On the one hand, a higher household income does, in principle, not
guarantee better long-term care, and a major increase would provide an additional
argument to those—not always entirely unjustified—critical voices who consider
entitlements to non-earmarked cash benefits already now as insufficiently targeted.
On the other hand, considerably higher care allowance payments are difficult to
81
In the short term—as already in other areas—only the coverage of family caregivers of a person
entitled to benefits according to care level 3 was to be extended also to persons entitled to lower
care allowance levels if these persons suffer from dementia or similar diseases.
82
In this context it must be noted that care allowance is neither subject to income tax nor is it
counted as part of the recipient’s income, but that it is generally indeed taken into account with
respect to the caregiver, even in the case of a close relative, thus reducing or excluding a possible
entitlement to benefits from the means-tested minimum income scheme, for example.
52 W.J. Pfeil
reconcile with the fact that the entitlements exist irrespective of the income and
assets of the person concerned and of their close relatives.83
An approach that avoids these problems to a large extent and that is more
compatible with an (otherwise) employment-focussed social system should there-
fore particularly seek to improve the compatibility of informal long-term care and
personal assistance with traditional employment. Apart from the above-mentioned
supporting measures, this would especially require labour law arrangements; the
first tentative steps in this direction have been taken with the recently granted
possibility of taking care leave or of working part-time while providing long-term
care (see above, footnote 61).84
3.6 More Self-Determination for Persons in Need

of Long-Term Care
According to the catchphrase saying that “long-term care cannot be provided by

money alone”, an increase in care allowance would not necessarily improve the
long-term or personal care situation of the persons who directly draw on
it. However, it goes without saying that—especially since the provinces are no
longer responsible and since the fragmentation of the federal responsibilities has
also been remedied—care allowance payments considerably strengthen the eco-
nomic and the social situation of the persons in need of long-term and personal care.
The fact that they are entitled to those payments under fair conditions, irrespective
of other life circumstances or reasons for their need of support or possibilities of
how to arrange for assistance, has given them more freedom and dignity.
Also the catalogue of needs to be recognised for being granted care allowance
and the way how these needs are assessed seem to be appropriate. In addition, the
classification criteria have been developed further and, if not remedied, remaining
weaknesses have at least been seriously addressed. Whether care allowance sus-
tainably enlarges the possibility of self-determination remains, of course, very
much dependent on the specific circumstances: Subjectively, it is not always
ensured that the persons concerned can create for themselves a better long-term
and personal care situation solely through a higher household income. Low income
households will easily be tempted to somehow take over long-term care themselves
and claim the additional funds for themselves to the greatest extent possible.
83
A means-test, also in view of the economic situation, would generate a considerable adminis-
trative burden with such funds being much better invested in an effective improvement of the long-
term care situation. For investment of assets see also Sect. 3.6 below.
84
While, according to Art. 14c and Art. 14d AVRAG—dependent on the employer’s agreement—
there is only the possibility of a temporary release from employment contract-related duties or of a
reduction of working hours together with a corresponding loss of income, Art. 29 and Art. 30 of the
Unemployment Insurance Act (AlVG) provide for a subsidiary entitlement to the coverage of these
persons within health and pension insurance.
This can result in both personal overload and quality problems, which can rarely
be remedied by a quick (partial) switching to services in kind (see above). That is
especially due to a lacking common factor regarding both cash benefits and benefits
in kind, but also to regional gaps and gaps in content when providing benefits in
kind and services—a fact which addresses the objective barriers to more self-
determination. Even after 20 years of care allowance no actual market has been
created for this, and is not likely to be created in the foreseeable future, a fact which
might serve as a further argument that a considerable increase in care allowance
will possibly be of limited effect.
The major objective obstacle to improving the possible options or the self-
determination for persons in need of long-term or personal care is, of course, the
regulatory framework for the use of the existing (public or publicly-organised)
services and benefits in kind. For the latter, different authorities are responsible than
for cash benefits, with competences frequently being unclear and services often not
being provided on the basis of a legal entitlement, if need be. Not only (a large part
of) care allowance is needed for claiming these services, but also all other income
and, especially in case of nursing home care also relatives may be required to make
co-payments and contribute to the reimbursement of costs.
Even if the tariffs usually do not cover the costs, the contributions are often
perceived as too expensive or unaffordable by the persons concerned. This often
results in people accepting long-term care of a poorer quality and/or in switching to
dubious solutions as it was the case with 24-hour-care in its (illegal) beginnings.
Regardless of the fact that care allowance can still be used to finance “illicit work”,
the regulations regarding 24-hour care have certainly improved the care situation
for many people, but, at the same time, they have also created new problems: Aside
from the—not only authorised but even fostered—exploitation of female care staff
from other countries it is especially the discrimination of those persons in need of
long-term care that requires mentioning who—notably for economic or social
reasons—cannot resort to this form of care, and who eventually receive less support
and have to make higher co-payments.
4 Attempts of an Appraisal after almost 25 Years
In spite of all these points of criticism, the overall verdict on the almost 25-year old
system of long-term care in Austria is mainly positive. On an international level, the
cash benefit system is certainly the most common system, with its basically
unrestricted circle of addressees, its exclusive orientation towards individual
needs and its differentiated graduation which, in some cases, provides substantial
financial support. Considered separately, also the system of benefits in kind has
significantly expanded and qualitatively improved. The same is true for the regu-
latory framework of both professional and informal care with the latter now
benefitting from high social insurance coverage and only recently provided labour
law support.
54 W.J. Pfeil
The fact that the system is largely detached with respect to both content and
organisation from the areas of the social system responsible for either health care or
invalidity or disability, naturally implies that problems occur at the interface of
these areas. As in the event of the introduction of the national long-term care
system, the main problem relates to the division of competences. Whereas this
problem has been overcome in regard of care allowance, cash benefits and benefits
in kinds are still organised and delivered by different providers. With respect to
benefits in kind it must be added that they are in the responsibility of ten different
lawmakers (who are committed to taking consideration of each other to a very
limited extent), who still mainly stick to the former “social welfare logic”.
The problems have well been identified, but many of the recent approaches used
to overcome the former have proved to be dubious or fall far short of what is
required. The first point particularly refers to 24-hour care, which has focused on a
segment of need (objectively overestimated by the public) and has provided a
temporary solution to it—however, in doing so accepting some “collateral dam-
age”. The second point especially refers to the care fund, which—when endowed
with adequate financial resources85 and equipped with effective penalty mecha-
nisms—might well become an instrument in the future to create an equal second
pillar alongside with the well-functioning cash benefit system through an extensive,
nationwide uniform network of high-quality, needs-based and affordable benefits in
kind and services.
References
Bundesministerium für Arbeit, Soziales und Konsumentenschutz (2013) Österreichischer

Pflegevorsorgebericht 2012. Wien. https://www.connexia.at/fileadmin/Kompetenzzentrum_
Pflege/Downloads/Pflegevorsorgeberichte_des_Bundes/Pflegevorsorgebericht_2012.pdf
Greifeneder M, Liebhart G (2013) Pflegegeld Handbuch, 3rd edn. MANZ, Wien
Hauptverband der €osterreichischen Sozialversicherungsträger (2017) Die € osterreichische
Sozialversicherung in Zahlen, 39th edition. https://www.sozialversicherung.at/cdscontent/
load?contentid=10008.643707&version=1504527408
Klaushofer R (2012) Sozialbetreuungsberufe. In: Pürgy E (ed) Das Recht der Länder, vol II/1. Jan
Sramek, Wien, pp 311–349
Krauskopf B (2012) Altenheime und Pflegeheime. In: Pürgy E (ed) Das Recht der Länder, vol II/1.
Jan Sramek, Wien, pp 351–364
Krispl M (2011) Drei Jahre F€ orderung der 24-Stunden-Betreuung durch Bund und Länder - eine
Bilanz. ÖZPR 2011(39):45 ff
Mayer S, Pfeil WJ (2012a) Behindertenhilfe. In: Pürgy E (ed) Das Recht der Länder, vol II/1. Jan
Sramek, Wien, pp 385–432
Mayer S, Pfeil WJ (2012b) Mindestsicherung und Sozialhilfe. In: Pürgy E (ed) Das Recht der
Länder, vol II/1. Jan Sramek, Wien, pp 259–310
85
For instance, by benefitting from a re-imposed, targeted inheritance tax instead of dubious social
obligations to pay compensation, which only exist towards persons who have become victims of a
stroke of fate and who are often socially vulnerable.
Mosler R, Müller R, Pfeil WJ (eds) (2015) Der SV-Komm, 133rd supplement Manz, Wien
Pfeil WJ (1994) Neuregelung der Pflegevorsorge in Österreich. Verlag des Österr.
Gewerkschaftsbundes, Wien
Pfeil WJ (2008) Arbeitszeitrechtliche Probleme der Pflege und Betreuung. In: Resch R (ed) Das
neue Arbeitszeitrecht. Verlag des Österr. Gewerkschaftsbundes, Wien, pp 69–103
Pfeil WJ (2013) Kostenersatz im Sozialhilferecht. Verm€ ogens- und Erbschaftssteuer nur für
Bedürftige (?). In: Gaisbauer HP, Neumaier O, Schweiger G, Sedmak C (eds) Erbschaftssteuer
im Kontext. Springer, Berlin, pp 83–98
Pruckner M (2008) Der Betreuer pflegt (nicht). Recht der Medizin (RdM) 2008(2):4–10
St€ockl E (2011) Die Reform der € osterreichischen Pflegesicherung. Verlag des Österr.
Gewerkschaftsbundes, Wien
The Czech Republic: No Promised Land
for Carers and Persons Dependent
on Long-Term Care
Kristina Koldinská and Martin Štefko
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58
2 Specific Systems (Benefits Systems) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
2.1 Long-Term Care Allowance: A Basic Benefit Paving the Way to Autonomy . . . . . . . 61
2.1.1 Level of Dependence on Assistance from Another Person and Determination
Thereof . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
2.1.2 Decisions Concerning the Granting of Care Allowance . . . . . . . . . . . . . . . . . . . . . . 63
2.1.3 Brief Assessment of Care Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
2.2 Social Care Services as a Means of Assistance to Facilitate Autonomous Living . . . . . 66
2.3 Health Care Services Provided to Persons Dependent on Long-Term Care in Their
Own Social Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
2.4 Services for Persons with Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
2.4.1 Mobility Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
2.4.2 Allowance for a Specific Therapeutic Appliance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
2.4.3 Granting of Benefits or Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
2.5 Legal Status and Protection of Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
2.5.1 Privileges for Caregivers According to Labour Law and Labour Policy . . . . 71
2.5.2 Support Measures with Regard to Pension Insurance . . . . . . . . . . . . . . . . . . . . . . . . . 75
3 Conditions Relating to Health Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78
3.1 Contract on the Provision of Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
3.2 Registration of Social Service Providers and Inspection of Social Service Provision:
Increased Protection for Persons Dependent on Long-Term Care . . . . . . . . . . . . . . . . . . . 80
3.3 Quality Assurance Regarding Services Provided to Persons in Need of Long-
Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82
3.4 Financing Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
Kristina Koldinská: This was made possible courtesy of the financial support within the framework
of the “Publicizace práva v evropském a mezinárodnı́m srovnánı́” research programme
[Publication of Law in International and European Comparison], Id. No. PQ02.
Martin Štefko: This was made possible courtesy of the Czech Science Foundation—GACR
through its project N. 17-03398S “The International Labour Organisation and its role in the
development of social law in Europe”.
K. Koldinská (*) • M. Štefko

Faculty of Law, Charles University Prague, Prague, Czech Republic
e-mail: koldinsk@prf.cuni.cz; stefkom@prf.cuni.cz

https://doi.org/10.1007/978-3-319-70081-6_3
58 K. Koldinská and M. Štefko
3.5 The Status of Social Workers and Employees in the Field of Social Service
Provision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 86
4 Concluding Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
1 Overview
The Czech Republic is a typical Central or, respectively, Eastern European country,
in that it adopted the Soviet social security model during the middle of the twentieth
century. This model resulted, particularly with regard to persons dependent on
assistance, in a publicly administered social (long-term) care system which focused
especially on the provision of long-term care in institutional facilities and on the
granting of social benefits.
The poor relief system, which was adopted from the Austro-Hungarian side
during the times of the so-called First Czechoslovak Republic, and which was later
developed successfully into a very modern system, worked well until 1956; it was
then that Act No. 55/1956 Coll. concerning social insurance was passed, which
became one of the fundamental and also, in its furthest sense, harmonising stan-
dards of social insurance law. The mentioned law also contained a regulation that
initiated a gradual turn towards the Soviet social insurance model.1 The main
change in the area of social care, the latter of which was introduced by way of
the new legal regulation, was the transfer of the duty to provide long-term care to
the State or, respectively, to its local authorities, i.e. the National Committees. The
task of the latter was “to help persons who required assistance, particularly persons
with reduced working ability, children, as well as elderly citizens or severely
disabled citizens.”2 Persons who required long-term care services from another
person were granted, almost exclusively, long-term care services provided within
an institutional framework; this applied both to persons with disabilities and senior
citizens.3 Persons dependent on long-term care who wished to stay in their homes
were granted the so-called home assistance service, which consisted mainly of
‘meals on wheels’ deliveries and household services like tidying up. However, even
today the home assistance service is generally not in a position to comprehensively
cover the needs of those whose state of health requires higher quality long-term care
and the provision of an extended range of services.
1
It remains a valid question as to whether orientation of the Central and Eastern European States
towards the Soviet social insurance model constitutes an unsurmountable factor for further
development; in this regard, we can already today speak of a specific, post-communist model of
social protection. Cf. e.g. Koldinská (2010), pp. 213–230.
2
Cf. § 50 Act No. 55/1956 Coll. on Social Insurance.
3
Care were also provided in so-called old people’s homes to perfectly healthy elderly persons, thus
sorting the living situation of many young families.
The Czech Republic: No Promised Land for Carers and Persons Dependent. . . 59
Eight years after the mentioned law had gained validity, a new legal regulation
was passed under the same name, i.e. as Act No. 101/1964 Coll.; in this new law,
social care was subsumed under the term “social insurance benefits and services”.
Social care continued to be granted exclusively by State bodies, i.e. the National
Committees and their commissions for social care. Their activities were coordi-
nated by the State Social Insurance Agency. A further law regarding social insur-
ance (Act No. 121/1975 Coll.) introduced a vast range of social benefits and
services, with provision and its extent depending on affiliation to a specific social
group. Persons dependent on long-term care were classified either in the category of
severely disabled citizens or that of elderly citizens.
A further legislative provision which also regulated social care in the context of
social insurance and which had been valid until recently was Act No. 100/1988
Coll. regarding social insurance. This provision constituted the legal basis of social
care until 2011.
The efforts taken to reform the previous, insufficient system of social care and
the transformation of the latter into a modern social assistance system were of a
relatively lengthy nature. The first attempts in this context can be traced back to the
first half of the 1990s. As early as 1990, the so-called Scenario of Social Reform
was passed. In the context of the latter, reform of the insufficient system of social
care was also envisaged.4 However, it took another 20 years before this goal was
fully accomplished.5
The current social assistance system consists of three elements or, respectively,
subsystems:
– assistance in the event of material need (Act No. 111/2006 Coll. on Assistance in
Material Need and Act No. 110/2006 Coll. on Living and Subsistence
Minimum)
– social services (Act No. 108/2006 Coll. on Social Services)
– benefits/services granted to persons with disabilities (Act. No. 329/2011 Coll. on
Disability Benefits).
The current social assistance system of the Czech Republic fulfils two basic
functions:
– prevention of poverty; should poverty arise, the aim is to minimize the effects to
avoid social exclusion (system of assistance in material need) and
– prevention of social exclusion; should this situation arise, the aim is to reinte-
grate socially excluded persons into society, particularly by means of granting
assistance to those who are dependent on help from other persons (system of
social services and system of benefits granted to persons with disabilities).
4
Cf. on this e.g. Koldinská (2006).
5
It was only in 2011 that the applicable legal regulation regarding social care as contained in the
aforementioned Act of 1988 was abolished. It had still contained benefits and services to be
granted to persons with severe disabilities. A new regulation of benefits for this group of persons
was effected only by means of Act No. 329/2011.
For this reason, particular focus of this chapter shall be on the two aforemen-
tioned subsystems of social assistance. Not to be neglected, however, shall be the
further benefits and services pertaining to other systems—e.g. to the system of
health services, which also regulates the so-called home care service.
The reform of the social assistance system brought about some positive concep-
tual changes, particularly if viewed from the perspective of those dependent on
long-term care who had, for nearly 50 years, been insufficiently provided for due to
the legal situation.
– The so-called (long-term) care allowance has been created as a means for
persons requiring social services to be able to procure the latter and pay for
them. This allowance is to promote the autonomy of persons dependent on long-
term care, as well as their social inclusion.
– Further benefits regulations have been passed separately for persons dependent
on long-term care or, respectively, persons who have to take compensating
actions to overcome their impairment in order to be able to integrate into
social life.
– A new classification of the social services has been adopted, in the context of
which the regulations for the social care services (long-term care services
provided to a person who is no longer capable of taking care of him- or herself)
have been laid down separately.
– A contractual relationship has been established between the provider and the
recipient of social services according to the contract principle. A contract is
concluded with regard to the provision of social services, making the recipient of
social services a client, i.e. a fully adequate contractual partner, of the social
services provider.
– A registration system for social services has also been introduced. Without
registration, it will no longer be possible to render social services; this is to
protect the recipients of social services—to a greater extent than it used to be the
case—from a potential violation of their rights.
– The qualification requirements for social workers or workers in the field of social
services provision have also been laid down by law; this is to assure a specific
quality standard with a view to the social services rendered directly by social
workers or, respectively, workers in the field of social services provision.
– In the context of the regulation of health care services (Act No. 372/2011 Coll.
on Health Services and conditions of their provision) the possibility of providing
health care services in the home of the patient has also been regulated; this is to
promote the autonomy, as well as the social inclusion, of the person dependent
on long-term care.
– The Act on Health Services also stipulates the conditions for receiving authori-
sation to provide health care services, inclusive of those that are provided in the
home environment of the patient.
In the following, the weak points of the current system shall be pointed out,
particularly those that may have an impact on the legal status and legal protection of
persons dependent on long-term care.
2 Specific Systems (Benefits Systems)
The above indicates that the concept of social protection in the Czech Republic has
undergone some positive changes. These changes also apply to the protection of
persons dependent on long-term care. This does not mean, however, that the current
social security system for persons dependent on long-term care is perfect. It also
does not mean that it could not do with some further development towards greater
autonomy and, in this context, especially towards more extensive options regarding
the possibility to remain in the home environment and to decide freely on the way in
which long-term care services should be provided (to be explained below).
2.1 Long-Term Care Allowance: A Basic Benefit Paving

the Way to Autonomy
The fundamental benefit designed in 2006 for the purpose of ensuring greater
autonomy to persons dependent on long-term care is, without doubt, the (long-
term) care allowance as regulated in the Social Services Act. As it were, the
adoption in 2006 of the legal regulation referring to this benefit represented a
revolution of the concept of long-term care provision to persons dependent on
it. Until then, the Czech Republic had provided no legal regulation whatsoever that
contained a right to a benefit that persons dependent on long-term care were directly
entitled to and whose purpose was to enable them to pay for the long-term care or,
more specifically, the care service(s) themselves. The previous legal regulation
merely, and in no way sufficiently, catered to the needs of caregivers who provided
long-term care to a person dependent on it in the home of the latter. These
caregivers generally tended to be family members.6
The concept of (long-term) care allowance corresponds to the concept of the
so-called per-capita subsidy that was introduced in the 1990s also in many other
European countries. The main idea of this concept is to give persons requiring
assistance with the activities of daily living some sort of financial aid from the
public budget; it is then up to the recipient to decide on how this contribution shall
be used and what kind of services are to be “purchased” from which particular
service provider. The concept is already defined in its introductory provision, which
regulates the modalities regarding care allowance. According to § 7 of the Social
Services Act, “care allowance shall be provided to persons dependent on another
physical person’s assistance for the purposes of arranging for necessary assistance.
The costs of the allowance shall be covered from the State budget.”
6
The previous legal regulation had classified care allowance as a benefit for care services to be
provided to a relative or any other in need; only during its recent years of applicability has the
actual amount granted (at least to some extent) compensated for income losses to caregivers.
The legal regulation has thus designed care allowance to act as an instrument by
which the State, and therefore society, contributes to the guaranteed provision of
assistance to persons dependent on help from other persons by the mere fact that
this subsidy is financed from the State budget. The choice of services and organi-
sation of the latter is left to the person who requires the assistance.
2.1.1 Level of Dependence on Assistance from Another Person

and Determination Thereof
The level (extent) of dependence on assistance from another physical person is

determined according to the following:
– slight dependence,
– moderate dependence,
– severe dependence,
– total dependence.
The level of dependence is determined according to the number of basic
necessities of life which a person is not capable of carrying out independently
due to his/her long-term unfavourable health condition. The evaluation is
categorised into 3 (level I), 4–5 (level II), 6–7 (level III) and 8–9 actions (level
IV) in relation to the following necessities: mobility, orientation, communication,
food provisioning, dressing and putting on shoes, body hygiene, exercise of one’s
physical needs, health care, personal activities, household care. The level of
dependence is determined by way of a medical assessment as well as of an
examination of the patient’s social environment. The examination of the social
environment is to supplement the medical assessment in such a way that the level of
dependence can be determined as exactly as possible, i.e. both the social environ-
ment and the conditions under which a person dependent on long-term care lives are
to be taken into account.
The amount to be paid is fixed according to the level of dependence and the
patient’s age. It ranges from 880 CZK (Czech crowns) (32€) to 13,200 CZK (480€).
It has been laid down by law that entitlement to a care allowance starts on the day
that the person for the first time requires assistance from another physical person
and fulfils the legally stipulated conditions. In everyday practise, a fundamental
problem connected to this benefit arises. In fact, care allowance is to help persons
who have ended up in a situation where they are dependent on help from others. It
shall be used by these persons to pay for the services they need. Often, however, the
state of health of the patient may deteriorate for no explicable reason. This is
relatively common among senior citizens, who represent the largest group of care
allowance beneficiaries. As a rule, such a person has to have been hospitalised and,
after discharge, has to have become dependent on domiciliary care; even though a
patient may not wish to be accommodated in a care facility he/she will often also
not be in a position to immediately pay for any domiciliary services provided. The
assessment of the level of dependence may currently also take several months in the
Czech Republic, even in cases where the patient is a client within the system who
has merely experienced a deterioration in his/her state of health and, due to this, has
applied for an increase in the allowance.7 If such a person does not have the
financial means (e.g. savings) to pay for care services (and other, often increased,
costs), he/she is left with no choice but to either arrange for relatives (if available) to
provide the necessary care, or to do without domiciliary care or, frequently without
the option of changing conditions for the better—which is often the case—, to move
into a permanent residential care facility. Furthermore, establishing a long-term
care service in the home of the patient involves considerable administrative effort;
the person dependent on long-term care will, nearly always, require help with this
process. However, such help cannot automatically be assumed from the regional
branch of the Czech Employment Office (Úrˇad práce), which is in charge of
granting this type of allowance. It must therefore be concluded that decisions
regarding the level of dependence, as well as related decisions regarding entitle-
ment to care allowance as such and determination of the amount to be granted
involve excessive waiting times.8 Consequently, this impairs the right of the person
dependent on care to essentially make a free choice on how to solve his/her care
situation, a circumstance quite obviously not intended by the legislator.
Such a person is, as a rule, also the beneficiary of the allowance granted on a
monthly basis by the regional branch of the Czech Employment Office. If the right
has been acquired by a person who has a legal representative, or who has commis-
sioned a third person with the provision of care, the allowance is generally paid to
these persons until the entitled person has reached the age of majority (i.e. 18 years
of age).
2.1.2 Decisions Concerning the Granting of Care Allowance
The regional branch of the Czech Employment Office decides on the granting of
care allowance and also pays arrears. Since 2012, this authority of the State
administration has been in charge of paying out all so-called non-contributory
7
The delay is caused by the fact that several institutions are involved in the assessment of the care
dependency level. The regional branch of the Czech Employment Office conducts an examination
of the social situation of the applicant, and only then forwards the matter to the district adminis-
tration of the social insurance authority that will assess the health status of the applicant. The
district administration in turn demands from the treating physician to be submitted a medical
report on the respective patient. Based on this information, the district administration of the social
insurance authority prepares an evaluation of the patient’s state of health and determines the
applicant’s degree of dependency on care to be provided by another person. Based again on this
evaluation, the regional branch of the Czech Employment Office now decides on the amount of
care allowance to be granted, and also starts disbursement, usually retroactively to the date of
application. It is not uncommon for decision processes to take 4 to 5 months, which is an
unacceptably long time.
8
Cf. on this problem e.g. in: Musil et al. (2011).
benefits. By way of harmonising the competences of all non-contributory systems9

the legislator tried to simplify the entire social insurance system and to make it
more client-friendly. However, this aim has not been entirely reached, as in the field
of social assistance, for instance, the responsibility for the assessment of a patient’s
state of health remains with the physicians of the district administrations of the
social insurance authorities. One of the crucial factors prolonging this already
critically viewed time-consuming process is the obligation of the regional branch
of the Czech Employment Office to demand an assessment of a patient’s state of
health from the regional administration of the social insurance authority, which, in
turn, bases its decision on the statement of the client’s treating physician. The legal
regulation which has changed and harmonised the entire system of competences
was passed in November 2011 and took effect on 1 January 2012. This resulted in
an unparalleled overload for the regional branches of the Czech Employment Office
and thus to a delay in the entire mechanism, with discontinued benefit payments
over a period of several months even for already registered social assistance clients
before the benefits were transferred from one competent authority and from one
system to another.
A further problematic aspect of the current legal regulation concerning the
awarding of care allowance is the circumstance that the latter was to be granted
with the aid of the so-called social system card (hereinafter referred to as S-Card).
This card was also intended to fulfil another, generally laudable, purpose: to
simplify the payment of all benefits (first only non-contributory benefits, later
also all further benefits inclusive of pensions) in one single payment. The S-Card
was to serve not only as a general payment card but also as proof of disability and as
a form of identification in relation to the information system of the Czech Ministry
of Labour and Social Affairs, (in Czech: MPSV). The latter maintains a list of
clients who are registered as beneficiaries in one of the benefits systems. The
S-Card project was started in 2012. However, it was met with a wave of very
strong, and obviously justified, criticism. This project was stopped by a law from
2013. If all clients of the non-contributory systems indeed had a means by which to
pay their expenses and to identify themselves as clients of such a system, it would
certainly be helpful and would also increase the independence of persons in need of
long-term care. These objectives have not been fulfilled by means of the S-Card.
The latter was criticised also with a view to the protection of confidential client data
and, furthermore, with regard to the inappropriately stipulated obligation for clients
to use the payment card and the account opened in connection with it even in cases
where the person already had an account and a card.
The authority approving the allowance checks whether the latter is actually used
for the purpose it was granted for. However, it is not the beneficiary who is
monitored but the social services provider who is paid for the services from the
9
In the Czech, this means a social assistance system by means of which family benefits as well as
all forms of social assistance—i.e. support in the event of material hardship, benefits for persons
with disabilities and social services—are paid.
beneficiary’s allowance. Should deficiencies be identified, the registration of the

social services provider may even be withdrawn (see below C II.).
Not subject to such check-ups, however, are related or other persons who share a
household with the beneficiary and who ensure that the latter receives long-term
care. After all, these persons—relatives, life partners, etc.—do not provide the
social care services on grounds of a registration, but on grounds of so-called
“informal assistance”. The care allowance may, however, ameliorate the situation
of these “caregiving” family members especially in the sense that their gainful
activity is not interrupted; furthermore, here, full-day personal long-term care is not
a stipulated condition as is the case for subsidies in the context of long-term care
provided to related or other persons. The law permits persons who are granted care
allowance to entrust their family members with the received means. From these
means the latter will, for instance, to some extent pay for services rendered during
the day to the person in need, i.e. the time during which the family members are at
work and cannot provide the care themselves.
2.1.3 Brief Assessment of Care Allowance
Care allowance contains several elements that make it one of the more modern
social welfare benefits:
– This benefit is granted exclusively on grounds of an assessment proving that the
health condition of the client is so bad that the latter cannot, at least with regard
to specific aspects, fully and autonomously take care of him-/herself and his or
her household.
– Persons dependent on long-term care are provided with financial means in order
to get motivated to make an independent choice of the specific social services
and organise their provision without the involvement of the authorities of the
State administration. In actual fact, if there is a sufficiently wide range of social
(care) services in the respective area, the client has a choice of “tailor-made”
services. Such ideal conditions are rare, however. It is sometimes the case in
Prague, but even there the supply is not guaranteed to always be sufficient. If, for
instance, a senior citizen with serious health problems decides to resort to
domiciliary care instead of using the services provided in a home for the elderly,
he/she may not be able to obtain full-day care even though he/she might
require it.
– Care allowance was designed in line with the objective of creating competitive
space for social services providers.
– At the same time, the concept of care allowance was to contribute to the aim of
promoting domiciliary care among persons who require it and to make them
resort to institutional care only in very severe cases. For care allowance makes
the person dependent on care a “client” who “purchases” the services rendered,
both with regard to the social services provider and also, for instance, with
regard to his/her own family members who act as caregivers in the

person’s home.
2.2 Social Care Services as a Means of Assistance

to Facilitate Autonomous Living
The Social Services Act was to a certain degree influenced by the example of
Germany and effected the introduction of three categories of social services:
– social counselling services,
– social care services, and
– social prevention services.
This Act also includes the classification into service types according to the
respective context of provision, with the following services being offered:
– assistance for independent living,
– outpatient services, as well as
– services provided in the patient’s home.
The social counselling services are, by law, subdivided into a basic and an expert
counselling service. The basic counselling service comprises the “provision of
necessary information that may help alleviate the adverse situation”. The expert
counselling service is “provided in specialized counselling offices and targeted to
the particular needs of the respective social groups.” The social counselling services
are, by law, primarily intended to serve as a first social service provision; in some
cases this might already be sufficient. Social counselling services are offered both
by the regional branches of the Czech Employment Office and by private social
services providers. Social counselling services are offered free of charge.
In cases where a person is dependent on long-term care provision through
another person, the social counselling service alone will not suffice to solve the
situation of the person in need. As has been mentioned before, however, the law
regulates a whole range of social services that can be granted to solve the adverse
situation of a person dependent on long-term care.
Social care services are by law defined as services “which help dependent
persons establish their physical and psychological autonomy, with the aim of
enabling their inclusion in everyday life within society to the largest possible
extent; in cases where this is ruled out due to their state of health the declared
aim is to ensure that they are treated with dignity in a dignified environment.”10
The law considers the following as social care services:
– provision of personal assistance,
– long-term care services,
10
Cf. § 38 Act . 108/2006 Coll. on Social Services.
– emergency nursing services,

– accompaniment of dependent persons and reading services,
– support measures enabling autonomous living,
– services to make life easier for dependent persons,
– outpatient service centres,
– day care centres,
– week care centres,
– care homes for persons with physical impairments,
– retirement homes,
– homes with special forms of organisation,
– sheltered housing schemes,
– social services provided in hospital facilities.
The basic endeavour shall in all cases be the maximum support of the clients’
autonomy, and their protection from social exclusion or, respectively, remedying of
the latter situation if it has already occurred. As the Czech Republic is still shaped
by reminiscences from the past, the general tendency among the Czech population
(both on the part of persons dependent on long-term care and on the part of family
members) is to solve adverse situations of this sort rather by way of accommodating
the dependent person in a care facility. This is based on the common argument that
professional help is the best form of help. Due to this, the facilities are, as a rule,
overburdened with work and underfinanced in the long term, leading to insufficient
service quality which, in turn, has a negative effect on the physical and psycholog-
ical well-being of persons dependent on long-term care.
The Social Services Act encompasses a very wide range of services. It may be
considered problematic, however, that with regard to social services, almost no
specific requirements have been stipulated by law, and that even the rights of clients
are in no way defined accordingly.
2.3 Health Care Services Provided to Persons Dependent

on Long-Term Care in Their Own Social Environment
The Act on Health Services stipulates that long-term care that is provided in a
person’s own social environment also counts as a form of health care. This type of
domiciliary service is called “home care” and means expert medical assistance
generally provided by nurses; this service can be provided in the home of the
dependent person. “Home care” includes long-term care services, rehabilitation
care and palliative care.11
The law further stipulates that in the personal social environment of the patient
only those medical services may be provided which do not strictly depend on the
11
General on home care in the Czech Republic is available in English at: http://www.domaci-pece.
info/home-care-in-czech-republic0 (last viewed on 15 May 2013).
technical and material equipment as found in medical facilities that would normally
be necessary for the service provision.
In the Czech Republic this form of long-term care is already relatively common,
particularly in bigger cities. Some providers of this form of care do not, however,
offer their services on weekends or public holidays, and there are very few pro-
viders that have the capacities of looking after a patient more than once a day or,
respectively, guarantee care services also during the night.12
Yet, it can already be considered great progress that the health insurances
meanwhile fully cover care services provided up to three times a day and lasting
an hour each. Such a care service may, if applicable, be supplemented with social
services as required by the dependent person, and be arranged for and covered
through care allowance.
In connection with the acknowledgement of the specifics of long-term care,
which is a field ranging somewhere in the middle between the social system and the
health system, the question arose as to whether a separate legislative basis should be
established with regard to long-term care.13 So far, however, no draft proposal or
actual act to this end has been passed. Only the sickness insurance system has been
amended recently, so that as of 1.1.2018 the long-term care allowance has been
introduced. This benefit can be provided for up to 3 months to a person, who has to
care after e.g. an elderly bed-ridden relative.
2.4 Services for Persons with Disability
At the end of 2011, a long-awaited law was passed. It definitively replaced the
previous legal framework concerning continuous social (long-term) care, which
had still listed a range of services for persons with severe disabilities. The previous
legal basis had already been outdated and was neither tailored to modern needs nor
to current trends in the field of social assistance for persons with disabilities. By
means of Act No. 329/2011 Coll. on Disability Benefits, a fairly complicated and
not quite uniform benefits system for persons with severe disabilities was thus
replaced. The new legal framework also aimed at simplifying the system with
regard to persons with disabilities.
The Act regulates the granting of cash benefits for persons with disabilities. In its
introductory provisions the declared goal to be attained through the Act is as
follows: the benefits are to reduce the impacts of the disability and promote the
social inclusion of those affected.14 It is thus a system which is to strengthen the
autonomy of persons with disabilities who also need assistance. What is provided in
this context is not any long-term care service, but the financial support required to
12
Průša and Vı́šek (2012), pp. 17–22.
13
Czech for Labour and Social Affairs (2010).
14
Cf. § 1 No. 329/2011 Coll.
guarantee the provision of therapeutic aids and appliances. The latter enable
persons with disabilities to lead autonomous lives, as well as to alter their care
needs as required or, at least, to reduce these needs or deal with them more
effectively. The fixed circle of persons entitled to these aids approximately corre-
sponds to the group of persons entitled to help in the event of material indigence.
By law, merely two benefits have been defined (the previous social care system
saw nine different benefits that had been defined), namely:
– mobility allowance and
– allowance for a specific therapeutic appliance.
2.4.1 Mobility Allowance
The granting of mobility allowance is regulated in fairly brief terms in Act

No. 329/2011 Coll. This allowance is granted to persons who are not capable of
fulfilling the basic living needs with regard to their own mobility or orientation,
who repeatedly need to travel or be transported in the course of a calendar month,
and who are not provided with social care services in the form of provided
accommodation. Persons involved are required to make a declaration on oath to
evidence the requirement of repeated travel.
The allowance is therefore intended for persons who do not make use of the
social care service in the form of accommodation but who prefer to remain in their
customary social environment. Persons of this category thus work or study in the
relevant environment or, respectively, take advantage of the opportunity to partic-
ipate in social life by means of travelling or being transported by another person to
cultural, educational or other types of social events, for instance. The allowance is
therefore clearly geared to supported living within a person’s own social environ-
ment, i.e. independent living with those affected being fully included in society.
The allowance is fixed at an amount of currently 550 CZK (approx. 21 EUR) per
month.15
In connection with this allowance a special provision has also been made with
the purpose of assessing the health status of benefit recipients; this provision refers
to the Social Services Act as well as to the regulations pertaining to health status
assessments with a view to care allowance. In order to relieve the client of the social
assistance system, it has been determined that no further assessment needs to be
made of a person’s health status once the latter has been established and evaluated
with a view to care allowance, and that the allowance shall, accordingly, be based
on the initial assessment. In consideration of the abovementioned criticism of
inappropriately long assessment times for benefit entitlements caused by lengthy
health assessment procedures, this development can only be welcomed.
15
Cf. § 7 Act No. 329/2011 Coll.
2.4.2 Allowance for a Specific Therapeutic Appliance
The allowance for a specific therapeutic appliance is a comprehensive benefit that

may be used for the procurement of a relatively wide range of appliances. This type
of allowance is granted to persons with severe disabilities of the musculoskeletal
system, as well as to persons with severe visual or hearing impairments.
The allowance is granted for a specific therapeutic appliance in its basic version;
this can be fully adapted to the individual needs of the person relying on it and, at
the same time, represents the smallest financial burden.
An allowance for a specific therapeutic appliance is always a one-time benefit.
Nevertheless, a further benefit payment may be effected after a certain time
(a further allowance may be granted after 10 years for the purchase of a (newer)
car, for instance).
Provision § 10 of Act No. 329/2011 Coll. regulates the amount of allowance to
be granted for a specific therapeutic appliance. This provision partly also refers to
an income assessment applicable in cases where the costs for the specific therapeu-
tic appliance amount to less than 24,000 CZK (just under 1000 EUR). The income
limit applicable for assessable persons or, respectively, persons who are assessable
in connection with the former, has been fixed at eight times the amount required for
a minimum subsistence level on the part of the person directly affected or, respec-
tively, the jointly assessed person. This is based on the notion that it may justifiably
be required of persons with disabilities and a larger income to purchase the relevant
appliance themselves instead of being funded from the public budget. It has been
stipulated that all other persons affected shall pay a contribution of 10% of the cost
for the needed specific appliance, no less, however, than a minimum of 1000 CZK
(approx. 40 EUR). The maximum amount of co-payments for a specific therapeutic
appliance is 350,000 CZK (approx. 14,000 EUR).
The Act also stipulates the obligation on the part of the beneficiary to refund the
allowance or the corresponding proportion in certain cases if it has not been drawn
in full or if the procured appliance—e.g. a car—is no longer in use.
2.4.3 Granting of Benefits or Services
The benefits and services intended for persons with disabilities are, like further
non-contributory benefits, administered by the regional branches of the Labour
Office. As with other social insurance systems, the benefit granting procedure is
initiated following an application. Evidence of severe disability, particularly severe
disability, or particularly severe disability requiring the personal attendance of a
third person can be produced by means of a special S-Card, i.e. the social systems
identification card. The type of identification and therefore also the degree of
disability are determined according to the dependence level pursuant to the Social
Services Act. The S-Card shall, at the same time, serve as a benefits payment
medium for persons with disabilities.
As already mentioned, the S-Card system is expected to be abolished. It was, in

fact, the Czech National Disability Council (CNDC) that lodged a constitutional
complaint in this regard; by way of this complaint, the Council demanded the
elimination of those passages in the regulation that referred to S-Cards. What was
particularly criticised was the fact that a private entity—i.e. a bank—has access to
very sensitive data related to clients of the social security system, with disclosed
information on the degree of disability of the person involved. This information can
also be found on the S-Card which, as mentioned above, may also be used for
payment processes. This has resulted in an infringement of the rights to personal
data protection, the more so as clients were forced to disclose the degree of their
disability each time they produced their S-Cards for payment purposes. At the time
of writing, the future of the S-Card was uncertain. Realistically, however, it can be
expected that the entire project will be abandoned.
2.5 Legal Status and Protection of Caregivers
To most persons dependent on long-term care the possibility to remain in their

natural social environment and receive the necessary care from a person close to
them presents an ideal solution. In this context, the care is usually provided by a
family member and, if applicable, combined with specific professional assistance
services or with health care measures provided in the home of the patient.
The decision of a family member to even give up his or her current gainful
activity in order to provide long-term care to a relative dependent on care in the
home of the latter (this may, in some cases, also prevent unemployment) should be
based on an agreement between the two parties regulating that the entirety of the
patient’s care allowance, or at least parts thereof, will be given to the caregiver for
reimbursement. In the case of care provided by a family member it is not necessary,
however, to lay down the conditions in writing, e.g. by concluding a formal
contract. In order for a caregiver to be defined as such it suffices to register the
person that is to provide the care in the application form for care allowance.
In social security law, caregivers are granted certain privileges that are to
compensate, at least to a certain extent, the fact that their working life has been
constrained or interrupted.
2.5.1 Privileges for Caregivers According to Labour Law and Labour

Policy
The Labour Code16 grants certain protection to persons who provide long-term care
to persons dependent on it. The rights of caregivers are specifically regulated with
regard to business trips and working times. An employer may send an employee on
16
Act No. /2006 Coll., Labour Code; cf. provisions in §§ 240 and 241.
a business trip for a minimum necessary period only after mutual agreement, and
may transfer this employee to a new place of work only upon application of the
latter.
2.5.1.1 Business Trips
A business trip is defined as a posting of an employee by the employer that is

limited in time and for the purpose of carrying out work outside the usual work-
place; the employee carries out the task(s) given according to the instructions of the
executive employee who sent him on this business trip. A particular provision in
this context refers to persons who assume care obligations for another person on a
mainly independent basis for a longer period of time. The latter is to be considered
as a person who requires the assistance of another physical person to an extent of
care level II (moderate dependence), level III (severe dependence) or level IV (total
dependence).17 Employees who are single, widowed or divorced, as well as women
and men who have remained single for other significant reasons are, unless they live
with a common-law spouse, in this context regarded as single employees.
The protection regulated by this specific provision also refers to cases where the
employer and the employee enter into an agreement on the posting of workers and
business trips and where only afterwards a situation arises that is taken account of in
the specific provision of the Labour Code. This protection has practical impacts if
the agreement on the posting of workers has not been concluded with regard to a
specific number of business trips but a general, larger capacity thereof or even, in
some cases, with regard to an indefinite number of trips within a defined period.
This is common in work that is typically and regularly carried out outside the main
workplace of the employer (service technicians, field representatives, etc.). If the
employer makes specific agreements with the employee with regard to each busi-
ness trip individually, the increased protection introduced by this provision has no
practical impact. After all, each time the employee agrees to go on a particular
business trip he automatically gives his formal consent, as required by the Labour
Code, for the business trip in question to be made.
Due to the increased protection of the aforementioned category of employees it
can be concluded that even if an employee consents to being posted at a point in
time where he/she does not act as a caregiver to a dependent person, the respective
agreement becomes void and the statutory regulation becomes fully applicable. If a
circumstance arises that is cited in the provision (permanent long-term care
required by a person who is considered dependent on help from another physical
person), the employer also has to comply with the provision contained in § 240 of
the Czech Labour Code. For the duration of these circumstances, the employer has
to obtain the consent of the employee if he wishes to post the latter outside the
17
Cf. Act . 108/2006 Coll. on Social Services. The determination of the care dependency level has
been dealt with above.
municipal district of the usual workplace or outside the employee’s place of

residence. The person providing long-term care to a person dependent on it does
not need to express in written form his/her consent to a proposed posting.
2.5.1.2 Job Transfers
Employees who provide long-term care to a person dependent on it are also

protected in terms of job transfers. A job transfer is defined by Czech law as a
fixed-term change of workplace as opposed to the place agreed on for work in the
labour contract. More than one job location may be fixed as a condition in the
labour contract. If the employer asks the employee to work in another place than the
regular location, and if this new location has been stipulated in the labour contract,
the relocation does not count as a job transfer. The increased protection merely
concerns changes in the labour contract in connection with the contractually agreed
job locations. In general, it is possible to transfer an employee for the purpose of
work to a job location other than that stipulated in the labour contract only if the
employee consents, if the employment relationship remains otherwise unchanged
and if the transfer is justifiable on grounds of operational needs on the part of the
employer. An employee who enjoys increased protection, meaning also any
employee who provides long-term care to a person dependent on help from another
physical person, may only be transferred after this employee has applied for such a
transfer. According to the current version of the Labour Code, the employer for his
part is not entitled to propose such a transfer. However, increased protection against
transfers to a new job location does not seem to be reasonable with regard to the
mentioned category of employees and contents of their work and imposes a
disproportionate burden on the employer. In fact, if the Labour Code generally
stipulates that a job transfer is only possible on the condition that the employee
consents to it, then this protection is sufficiently applicable also to those employees
who enjoy an increased level of protection. Disproportionate protection would
mean any protection that precludes the employer from conducting negotiations
regarding a potential change in working conditions. The protection of employees
with an increased protection status is already sufficiently guaranteed by the general
provision. Accordingly, no employee may be transferred to a new job location for
the purpose of work without his/her consent. A change of location for the purpose of
work can be effected only after mutual agreement, i.e. also with employees who
enjoy an increased protection status.18
2.5.1.3 Reduction of Working Hours
A further special working condition refers to § 241 Para. 2 of the Labour Code.
Accordingly, the employer is obliged to comply with the employee’s request for
18
Cf. Halı́řová (2003), p. 564; Bukovjan (2011), p. 50.
reduced working hours or any other suitable arrangement, insofar as the employee
in question can furnish proof that he/she provides care on a permanent and mainly
independent basis to a person who is dependent on help from another person to the
extent of care level II, III or IV.
According to the general provision, a reduction in working hours can only be
effected if both parties to the employment relationship, i.e. the employer and the
employee, conclude an agreement suited to this purpose. Since 1 January 2012, it
has been expressly stated in § 80 of the Labour Code that this represents merely an
individual agreement concluded between the employee and the employer that
cannot be replaced by an agreement in the labour contract. If no particular agree-
ment has been concluded, the employee is obliged to work during the contractually
agreed weekly hours. In turn, the employer is obliged to assign to the employee
work duties that can be fulfilled within the limits of the contractually agreed weekly
hours. This is also in line with the right of the employee to be assigned work duties
that can be fulfilled within the limits of the contractually agreed weekly hours.
Agreements on reduced working hours are not limited in their scope, except for the
condition that even in the event of reduced working hours, the duration of one shift
must not exceed 12 h. The reduced working hours do not need to be distributed
evenly among the entire working week. The employee is entitled to wages or a
salary calculated in compliance with the reduced working hours. However, the
employee does not have the right to demand from the employer an agreement to be
concluded on reduced working hours pursuant to § 80 of the Labour Code.
Apart from this general provision, caregiving employees are also entitled to
reduce their working hours or to enter into a similarly suitable rearrangement of the
contractually agreed weekly hours if their request to do so does not cause significant
operational difficulties. As opposed to the general provision, this entitlement is a
right which the employee may claim before the competent court in the event of
refusal on the employer’s part to grant this right. The wage or salary to be paid to
the entitled employee is calculated proportionally according to the reduced working
hours. As to the content, the application of an employee entitled to reduced working
hours must include a specification of the new and reduced working hours or any
other rearrangement of working hours. It is possible to simultaneously apply for a
reduction in working hours and for an individual rescheduling of working hours that
may differ from the generally stipulated working times for employees. Of relevance
in the assessment of significant operational reasons on the employer’s side to refuse
a request is the question as to what extent the business would be negatively
impacted if the employee reduced his/her working hours as opposed to the latter
keeping his/her full working schedule. The employee’s request may be refused on
grounds of significant operational reasons if, due to the reduction in working hours,
the proper operation of the business would be impeded or seriously jeopardised
(fulfilment of tasks or activities).
2.5.1.4 Unemployment Benefits
The Employment Act also guarantees a certain privilege to caregivers.19 In order

for a person to be entitled to claim unemployment benefits (financial support in the
event of unemployment or support for professional retraining), a specific period of
employment is required in line with this Act, with employment required to have
been ongoing during the 2 years prior to the person with accrued rights being listed
in the registry of job-seekers. The period of long-term care provided to a person
classified as dependent on help from another physical person to the extent of care
level II, III or IV in accordance with a specific legal provision is considered as a
period of alternative employment, i.e. the period in question is regarded as time
during which the caregiver has been regularly employed. A prerequisite is either for
the person dependent on care to be living in a common household with the
job-seeker on a permanent basis and to be sharing the living costs; or for the care
to be provided by a person close to the patient, usually a family member.20 The fact
that an employee needs to provide long-term care to a person classified under care
level II, III or IV is also considered a significant reason justifying the termination, or
an agreement concluded on the termination, of the employment relationship on the
part of the employee. The condition is for the person dependent on long-term care
and the job-seeker to be living in a common household on a permanent basis and to
be sharing the living costs. The fulfilment of this condition is not required if the
caregiver is regarded as a person close to the patient for purposes relating to pension
insurance. In cases where a job-seeker terminates, on his own account or by way of
agreement, several employment relationships in 1 day, of which at least one is
terminated for significant reasons, he/she is entitled to unreduced unemployment
benefits.
2.5.2 Support Measures with Regard to Pension Insurance
A commendable activity is to some extent also taken account of in the basic system
of pension insurance.
In the Czech Republic, the pension system is generally based on the insurance
principle. The funds from which the benefits are paid are taken from the State
budget, which comprises the insurance contributions collected from the income of
gainfully employed persons. At the same time, this also brings to bear the security
principle. There are situations which imply a participation in the insurance system
although no contributions are paid during the relevant period. The mere fact that a
person does not engage in gainful employment which would make him/her a
member of the pension insurance scheme does not necessarily mean that he/she
19
Act No. /2004 Coll. on Employment.
20
Cf. § 41 Act No. 435/2004 Coll. on Employment.
does not participate in this scheme. This is the so-called “contribution-equivalent

period”.
In public pension insurance, the period during which an insured person cares for
an individual of any age who is in need of long-term care and who is dependent on
the assistance of another person according to care level II, III or IV, is in insurance
terms regarded as a “contribution-equivalent period”. A precondition for acknowl-
edgement of the “contribution-equivalent period” is, however, that the caregiver
and the person to be cared for live in the same household and share their living
costs. The precondition of the so-called common household does not apply if the
caregiver is closely related. Closely related persons are:
– the spouse
– a relative in the direct line,
– a child of one’s own,
– an adoptee, or
– a child entrusted on the basis of the decision of a competent authority, for whom
the rights of custody have been obtained replacing parental care.
Also included are:
– a brother or sister,
– a son-in-law
– a daughter- in-law,
– the spouse of a parent, and also
– a person who stands in one of the above-mentioned relationships to the spouse of
the caregiver.
This is a peculiar feature of the Czech system which, in the framework of the
reforms, has been gradually limited—although so far only partially.21
21
According to statistical data, replacement periods constitute up to ¼ of all periods of time
creditable for pension insurance. This fact considerably increases the financial costs to be borne for
the disbursement of benefits from the pension insurance system. The following chronological
development can be noted with regard to the legal regulation of this type of insurance:
– until 30 June, a replacement period was creditable for insurance purposes only for the length of
time during which care was provided to a nearly or entirely helpless person, or to a partially
helpless relative older than 80 years of age.
– from 1 July 2001 until 31 December 2006, a replacement period was also creditable for
insurance purposes for the length of time during which care was provided to any other person
than a relative if the person in question was nearly or entirely helpless or, if applicable, if this
person was a partially helpless relative older than 80 years of age. As distinct from care
provided to a relative, the length of time accreditable is any period calculated after 30 June
2001, and only for the time during which the caregiver shared a household with the helpless
person (i.e. lived on a permanent basis with the latter and shared all costs to meet their daily
needs).
– until 31 December, a replacement period was creditable for the length of time during which
care services were personally provided to a nearly or entirely helpless person, or to a partially
helpless relative older than 80 years of age. Even after this reform, the replacement period
As a rule, the “contribution-equivalent period” is acknowledged to a lesser

extent than the length of membership in an insurance scheme, with respect to
both the insurance period and the amount of benefit.
However, in the event of a “contribution-equivalent period” which applies to
care provided to a person dependent on long-term care, the duration is fully,
i.e. 100%, accountable, with respect to both the entitlement to and the amount of
the pension benefit. If, in addition, the period extends into the qualifying period,
i.e. the period which determines the basis of calculation of the insured, it is fully
accounted for as an exclusion period. That means that a person’s earnings which
have been accumulated prior or subsequent to the period of care provision are not
itemised over the period during which no adequate income was achieved due to
long-term care provided to a dependent person.22
The insurance history may feature situations that are similar to an exclusion
period. The persons concerned may simultaneously pursue a gainful activity earn-
ing a minimum income for which they must, however, pay insurance contributions.
This was the case for a woman, for instance, who looked after her dependent mother
in care level III, and who earned an additional 3000 CZK per month by distributing
advertising brochures on the basis of a work contract. Under such circumstances it
is necessary on an ex officio basis, pursuant to pension insurance law, to take
account of the income earned during the exclusion period when calculating
the pension benefit, a procedure that has a negative effect on the benefit amount.
As of late23, insured persons may, in such a case, request of the Czech social
insurance administration ČSSZ as the funder of pension insurance to recognise the
priority nature of the exclusion period over the income that has been simultaneously
achieved, an approach which has a positive impact on the pension amount; the
ČSSZ will, however, not opt for this more favourable approach if the insured person
has not applied for it.
The period of care provided to a person dependent to the extent of care level II,
III or IV, or the care provided to a mainly, fully or partially dependent person aged
creditable for pension insurance purposes for persons who personally provided care services to
a nearly or entirely helpless person, or to a partially helpless person older than 80 years of age,
and who shared a common household with the latter, was calculated according to the legal
regulations applicable before 1 January 2007.
22
The periods are significant in that they influence the determination of the pension level: the
number of days applicable to the exclusion period (EP) is deducted from the overall number of
days with gainful employment (OND), and the result is used to calculate the average income
gained during the entitlement period. The average daily income (ADI) (and consequently also the
monthly income) gained during the entitlement period thus results from the calculation of the
overall amount of income achieved during the entitlement period (OAI) against the number of days
of gainful employment within the entitlement period (thus by no means calculated against the
number of days within the exclusion period during which the social care activity was executed,
i.e. during which no income was gained). The pension level is ultimately calculated according to
the following formula: ADI ¼ OAI/(OND – EP) (Czech abbreviation of the formula: DPP ¼
CSP/(CPD – VD).
23
This only concerns pensions for which a claim arose before 31 December 2009.
over 80, is substantiated by the decision of the regional administration of the social
insurance authority.
3 Conditions Relating to Health Service Delivery
The aim of the new regulation on social services of 2006 was to improve the quality
of the provided services. Long-term care was to be secured in a way and to an extent
that was in accordance with the current state of knowledge and the capacities of the
Czech Republic.
The providers enter into a contractual relationship with the persons in need of
assistance who receive a certain financial support by the social insurance system to
finance this long-term care. The providers are very often professional social service
providers acting in the various forms of a legal person or as a natural person. In the
field of professional social service providers, the positions of the social workers and
persons working in the social services sector are regulated by the Social Services
Act. Long-term care can, and indeed often will, also be provided by informal
providers, who are generally family members of the person in need of long-
term care.
The Social Services Act determines the basic principles for the provision of
social services. The Act specifies indeed that both the extent as well as the form of
assistance and support provided via social services must respect human dignity. The
assistance must be oriented towards people’s individually determined needs, must
have an active effect towards these persons, promote the development of personal
autonomy, motivate the persons to whom care is provided to perform activities
preventing that their unfavourable social situation stagnates or even declines, and
contribute to their social integration. Social services must be provided in the interest
of the dependent persons, in an appropriate quality and in a way that the respect of
human rights and fundamental freedoms of these persons is consistently
guaranteed.24 On the basis of these principles it becomes relatively clear what
long-term care should look like that is to be delivered to persons in need of long-
term care. Hence, such professional long-term care shall
– safeguard human dignity and respect human rights and fundamental freedoms at
that level at all times;
– be tailored to individual needs, i.e. take account of all particularities and specific
requirements of the person to whom it is provided;
– have an active effect, promote the development of self-reliance and strengthen
social inclusion.
Unfortunately these principles are not always respected in everyday care pro-
cesses. This is particularly true for clients who are in need of intensive care and who
24
Cf. § 2 Para. 2 Act No. 108/2006 Coll. on Social Services (Zákon o sociálních službách).
suffer, for example, from a combination of health disorders (as may be the case for
an elderly person who has dementia and is at the same time dependent on long-term
care provision by another person).25
As to the organisation of the social services system, emphasis is put on the
contract principle, with the beneficiary taking on the role of a system customer. A
further aim of the new legal regulation was to put some form of order to the
previously very chaotic and confusing situation with regard to both the develop-
ment and the ongoing operation of social service providers. Social service providers
had, in fact, developed before the Social Services Act was adopted, and had hence
been operated without any restrictions and also any quality control of the social
services provided. The aim was to remedy the situation through, among other
things, the introduction of compulsory registration for all social service providers.
This obligation was to provide a better overview to public administration as to what
services were provided, by whom, to what extent, and in which of the individual
regions of the Czech Republic. In this context, the social service providers were to
be subject to controls, especially regarding their economic activities and the quality
of the provided services. By way of clear rules concerning the financing of services
from the State budget, the new regulation also made an attempt towards equalising
the unequal material position of providers that are not subject to the government or
a regional administrative unit. Last but not least, the Social Services Act also aimed
at regulating the principles of social personnel policy in relation to social workers.26
Their position was intended to improve and, above all, to be firmly entrenched.
Consideration has been given for some time to the support of an independent law
for social workers which, among other things, would also imply the establishment
of an autonomous professional association.
In the Czech Republic no information about more modern management concepts
is available as yet regarding social services or long-term care provision by itself.
That is why, in the following, the focus shall be on the critical examination of the
contract principle before dealing with the registration of social service providers,
their funding, as well as the quality assurance of services provided.
3.1 Contract on the Provision of Social Services
It was only with the adoption of the Social Services Act that the contract principle
was introduced in the field of professionally provided long-term care. The person in
need of social services and the provider of the latter are under an obligation by law
25
The reports on the systematic visits of social care facilities on the part of the ombudsman can be
viewed at: http://www.ochrance.cz/ochrana-osob-omezenych-na-svobode/zarizeni/zarizeni-
socialnich-sluzeb/ (viewed on 15 May 2013). In many cases, these visits revealed shortcomings,
particularly with regard to the obligation to respect the clients’ dignity and to engage them in social
activties (social activation).
26
The Report mentions the term “human resources”. Cf. Formation Report (2005).
to conclude a contract on the provision of social services. In some cases, and

especially in the case of social service provision, the parties involved are obliged
to draw up the contract in writing.
The provider who offers the service needed and who has sufficient capacity to
provide the latter, is bound to conclude a contract with the person who asked to be
delivered the service.
The law is drawn up in such a way that non-governmental social service pro-
viders are privileged. In the field of social services, the municipalities and the
regions merely ensure support services: They provide social services where they
cannot be delivered otherwise and where the person in need of the social service
would eventually run the risk of health damage or death. They ensure that the need
for social services is met in their district, and they facilitate the availability of
information about social services and draw up plans for the development of social
services on their territory in the medium term. The contract will usually be
concluded between the social service recipient and a non-governmental (private)
provider delivering these services.
The introduction of the obligation to conclude a contract on the provision of
services can be considered very positive, since it strengthens the position of the
recipient as a “client” and establishes a clear relationship between the service
provider and the person to whom the services are delivered. The mere introduction
of the contract principle is, however, no panacea, especially in the field of long-term
care granted in inpatient institutions. That is to say that experience has demon-
strated that clients receiving social services, and hence particularly persons depen-
dent on long-term care, are mostly faced with such a complicated situation that they
will, in effect, sign any document in order to be admitted to an institution and solve
their problem. In those cases, it might be helpful to create—at least in some
institutions—the position of an ombudsman who would protect the interests of
clients that are provided such social services. Such a solution has, however, not yet
been adopted in the Czech Republic so that the drawing up of the contract mostly
remains in the responsibility of the social service provider.
3.2 Registration of Social Service Providers and Inspection

of Social Service Provision: Increased Protection
for Persons Dependent on Long-Term Care
One of the problems of existing legal regulations was that some associations,
organisations or individual persons offered social services without any legal
basis. At the most, general legal regulations were taken into account which did,
however, not at all mention the specifics of social services. The new legal regula-
tions contained in the Social Services Act were to address these shortcomings. The
registration system covering the social service providers was to be structured in
such a way that any provider who intended to deliver social services—i.e. also
social services for persons with special needs—would be subjected to a certain
control while meeting at the same time at least minimum professional requirements
for the delivery, in order to be able to interact with any such weak clients as those
dependent on long-term care.
As already mentioned, the social service concept implies that these services are,
not least, provided by non-governmental organisations. The previously existing
regulation did not determine any rules regarding the delivery of social services by
non-governmental providers. These providers had merely been listed in general
directories together with citizens’ associations, non-profit organisations and regis-
tered church institutions. Within the field of social services no independent rules
had been set up regarding the requirements, neither in respect of the competence of
the personnel, nor of the premises where these services are delivered, nor of the
quality of the provided services as such. The situation was to change considerably
with the new Social Services Act.
At present, social services can only be delivered if an authorisation to provide
social services has been granted. Eligibility for such social service provision arises
following the decision on a registration issued by the relevant regional authorities.
The law specifies the following requirements regarding a registration:
– professional qualification,
– a police clearance certificate (of all persons that are to directly deliver social
services),
– the guaranteed provision of adequate hygienic, technical and material
conditions,
– ownership of or a comparable title to the premises in which the services are to be
provided.
The social service providers will then be listed in a special directory containing
basic information about them, including their capacities as well as descriptions of
the activities they offer. Thus, the directory gives a summary overview of the kind
of services offered by certain providers in certain areas, including the capacities
they have.
In this event, the basic planning competence is with the region. Before
authorising the registration of a certain social service provider, the regional author-
ity makes an analysis of both the present resources as well as the needs and adjusts
the situation to the strategy for the provision and the development of social services.
This strategy should not only work towards (merely) covering the need for social
services in a certain region but also be responsive to the potential loss of a social
service provider. According to statistical data from the Czech Ministry of Labour
and Social Affairs, most social services are provided by institutions belonging to
the municipalities or regions (as regards absolute figures), although
non-governmental non-profit organisations represent the majority among pro-
viders.27 Analytical studies are still proving a regional imbalance, with Prague
27
Cf. statistical analysis of the Czech Ministry of Labour and Social Affairs at: http://www.mpsv.
cz/files/clanky/9198/Analyza_fin_SS.pdf, pp. 7 and 13 (viewed on 25 April 2013), statistical
information valid as of 29 April 2013 can be found at: https://sluzbyprevence.mpsv.cz/index.
and the regional capitals featuring a significantly higher coverage. From a material
perspective, the new law apparently even had a minor impact on the structure of
everyday social service provision, although the possibility of adjusting different
types of social services was extremely limited due to the fact that comparable
categories regarding quite a few types of social services did not exist before 2005.28
A registration is not only required of natural and legal persons (like citizens’
associations or non-profit organisations), but also of public organisational units or
of certain territories with autonomous entities, with the social services being
provided on their behalf by an organisational unit autonomously responsible for a
certain area. The result was a gradual move towards an equal treatment of
non-governmental and public service providers, since it happened that, in everyday
life, in particular the latter were given preferential treatment, especially with regard
to financing. While they automatically received public funds to finance their
institutions, the non-governmental providers of social services had to undergo a
challenging process and apply for financial support, without being sure to receive it.
The registering body may also delete a registration. This occurs in particular if a
social service provider no longer meets the registering conditions or if it has
committed a fundamental breach of its obligations and has therefore been sanc-
tioned for administrative violation. Registration is also deleted if the provider has
failed to meet the quality standards regarding the provided services and does not
remedy this deficiency. Of course, providers of social services can, on their part, ask
to be deleted from the registration list if they have decided to stop their activities.
However, terminating a registration generally results in a sanction; this possibility
is an additional means to protect the clients and their interests and to prevent a
violation of their rights. This is particularly true for clients who depend on long-
term care provided by another person, since such clients are particularly vulnerable,
and any potentially unethical behaviour on the part of the social service provider or
a violation of the client’s rights or of his/her dignity might, in fact, have a very
negative impact on the health of the person in need of long-term care.
3.3 Quality Assurance Regarding Services Provided

to Persons in Need of Long-Term Care
Another tool used by the State to protect the clients is the institute for the provision
of social services, with inspections being carried out by the local offices of the
Czech Employment Office. The purpose of the inspection is to systematically
examine and evaluate the approaches and methods used in the provision of social
services. The inspection is always carried out at the place of social service delivery.
php?ses¼&id¼25&zpr¼109. Current division of governmental, regional, municipal and

non-governmental providers can be found at: https://sluzbyprevence.mpsv.cz/index.php?ses¼&
id¼25&zpr¼123 (cited: 29 April 2013).
28
Průša and Vı́šek (2012), pp. 20 ff.
The inspection may order measures to be taken by the social service provider to
remedy any deficiencies identified. The purpose of the inspection is therefore to
ensure the fulfilment of the duties of the social service providers as well as to assure
the quality of the delivered social services in line with the quality standards for
social services. The quality standards are the subject of an explicit implementing
regulation. The latter covers a catalogue of criteria defining the level of quality as
well as the social service provision in terms of both personal and occupational
security and of the relationships between the provider and the recipient of social
services. The standards particularly relate to the provider’s obligation regarding the
activities which ensure the proper provision of social services, the protection of the
personal will, of the human rights as well as of the recipient’s personality in order to
prevent or solve conflicts of interest between the social service provider and the
social service recipient. The social service provider who undergoes the inspection
must allow the inspection team to ask social service beneficiaries questions on
matters connected with the provision of the social services and relevant to the
inspection. A negative inspection result may, in the worst case, lead to deletion
from the register if the provider does not remedy the identified deficiencies through
measures directly imposed on him during the inspection.
Evaluating the quality of the services provided is one of the most delicate aspects
of social service inspections. Securing a maximum of impartiality is indispensable
and extremely difficult.
The aforementioned applies especially to services granted in a residential care
facility for senior citizens or persons with disabilities. These persons often opt for
accommodation and for services provided in institutions run by the municipality or
region. It is, however, exactly the region that carries out the inspection of social
service delivery in its own institutions. Furthermore, the residents of such institu-
tions are often not willing to talk openly about the actual level of services delivered
on the part of the provider, since they are frequently dependent on the institution in
which they live.
In summary, it can be assessed as positive that the granting of social services is
only possible on account of a registration and that inspections of social service
provision have been introduced. Social services are delivered to particularly vulner-
able persons. It is therefore desirable that the State should protect these clients. Among
other things, this is achieved by authorising the provision of social services only if the
applicant meets the basic authorisation conditions directly imposed on social service
providers by law, and also by inspecting the providers at regular intervals.
3.4 Financing Social Services
Although the new legislation—along with the standards—represents a significant

step forward, it cannot be said that the goal, even 6 years after entry into force of the
law, has been reached. The problems connected with the funding of social services,
including long-term care, are the key to understanding the current situation. The
funding system in fact continues to be the major factor impeding the transition of
the sector of social service provision towards a field of dynamic competition.29

Although an emphasis should be placed on multi-source financing, State subsidies
usually remain the basic source of income for many social service providers due to a
number of factors.30
Funding accorded in the form of State subsidies is assumed to represent the most
important income source for social service providers. These subsidies are paid out
to the social service providers listed in the register from the budget of the relevant
region. The subsidy must be annually applied for by the provider, an entitlement
does, however, not exist. Contrary to previous procedure, the regional office now
submits the application to the Ministry of Labour and Social Affairs. The law does
not specify the amount of the subsidy or what part of the social service costs it is to
cover. The only stipulation is that the subsidies for financing the ordinary expen-
diture associated with social service provision should be paid out in accordance
with the medium-term development plan for social services.
This funding concept of social services takes into account the long-awaited equal
treatment arrangement for providers of social services, since a subsidy must be
applied for by each of the providers and not only by non-governmental organisa-
tions as had been the case before.
However, the grant process is not transparent, which is partially due to the fact
that no implementing rule has been adopted providing for a judicial review in the
event of dissatisfied applicants.31 Funds from public sources are variable; they tend,
however, to decline in times of economic crisis.32 Furthermore, the subsidy is
granted for a limited period (of 1 year) without any guarantee of further allocation
in the following year. The next important funding source—the remuneration for the
provision of services—is capped through a maximum amount in many cases, with
the result that it is not possible for old people’s homes, for instance, to mainly cover
their operating costs from these sources. From a political point of view, it is,
however, unacceptable to just leave the larger homes for elderly people and social
service providers offering accommodation to their fate,33 a circumstance which
29
Průša and Vı́šek (2012), p. 18.
30
Cf. Průša (2013).
31
The rules and conditions the granting of an allowance, the application procedure, the procedure
regarding the assessment of the application and determination of the amount to be granted, the
rules and conditions for drawing benefits, for control methods and for the financial arrangement of
the grant disbursement are listed in Metodika inisterstva práce a sociálních veˇcí ČR pro
poskytování dotací ze státního rozpočtu a posouzení žádosti o dotaci ze státního rozpočtu v oblasti
podpory poskytování sociálních služeb [Methodological Manual of the Ministry for Labour and
Social Affairs of the Czech Republic for the Granting of Subsidies from the State Budget in the Field
of Social Service Provision]. Further information available at: http://www.mpsv.cz/cs/13566
(cited: 25 April 2013).
32
On the limitation of funds in 2013 cf. http://www.rozhlas.cz/zpravy/politika/_zprava/
poskytovatele-socialnich-sluzeb-letos-dostali-nizsi-dotace-od-statu-hrozi-omezovani--1176743
(cited: 25 April 2013).
33
Provision § 93 lit. a) of the Social Services Act obliges the regional office to guarantee the
provision of social services within the framework of cooperation. The Social Services Act
again impedes the availability of public financial resources for other projects in the
area of social services. Social service providers say that the basic allowance
determined to “purchase” social services—i.e. care allowance—is, by the majority,
used for other purposes. That is why, in this case, professionals tend to advocate
vouchers. Furthermore, also the cost-cutting efforts of the health insurance funds
must be taken into account in this respect. They refer clients to facilities with social
service provision instead of offering them high quality follow-up medical checks—
irrespective of whether these checks are provided in an inpatient or an outpatient
setting, in any case, however, by a professional medical service provider and by
using funds from the public health insurance system.34 It must be added to the
aforementioned that it deems appropriate to offer medical care to persons in need of
long-term care in conjunction with social services. However, in everyday practice
this is, with few exceptions, not the case. In hospitals, the patient comes in contact
with social services merely in terms of advice given to resolve the client’s new
social situation, if appropriate. Such a situation is often dealt with by accommo-
dating the person in need of long-term care in a nursing home where long-term care
is generally delivered at a low very level and under inappropriate conditions; or the
person is directly accommodated in a residential facility providing social services,
which in many cases does, however, neither offer sufficient medical equipment nor
sufficient personnel.
It clearly follows from the above that the smaller social service providers which
are neither funded by the government, nor by a municipality or region, are facing
existential problems time and again, and are forced to compromise due to the high
standards that make no difference between the various categories of providers. It is
the practical work in its real context which is most affected in this respect, a fact
which results in increased pressure on social service provision in residential
homes.35 Even in the light of those facts, the Western European trend of moving
away from social service provision in residential homes and towards long-term care
provision in the domestic setting does not seem to make itself completely felt in the
Czech Republic.
Another source of funding for social service provision derives from the pay-
ments that are made for these services by the clients themselves. It is assumed that
the expenses for social services should mainly and particularly be covered by care
provides for the obligation to provide social services in situations, for instance, where the social
service provider has discontinued provision and where, as a result, the rights and interests of
persons previously provided with social services are now jeopardised, since these persons are not
capable, on their own account, of arranging for a resumption of the guaranteed service provision.
This , for instance, be the case for senior citizens who have lost their contact points for social care,
with the respective provider either being forced or having decided to discontinue the relevant
service provision. For more detail see: Štefko (2013, pp. 9–11).
34
A description of the situation is at: http://www.parlamentnilisty.cz/zpravy/Gabriel-ODS-
Socialni-politika-269790 (viewed on 29 April 2013).
35
Průša and Vı́šek (2012), p. 19.
allowances.36 The paid social services comprise housing services with payments
made for accommodation, food and long-term care provision as contractually
agreed upon, as well as assistance services within the framework of which the
contractual, basic activities are paid.
A legal norm which is hierarchically subordinate to a law determines the
maximum amount. The latter must be determined, since the social service is a
service provided to the public from which no purely commercial or profit-focussed
activity can be developed. This applies although in the meantime social care
facilities have been established which offer premium services to their clients at
premium prices.
3.5 The Status of Social Workers and Employees in the Field

of Social Service Provision
The legislator considered professional expertise of the social workers to be one of

the most important prerequisites for an increase in quality of the services provided.37
This idea is reflected in the principle of expertise regarding the provided long-term
care, which is again quoted in respect of the quality of the social services.38
Most often, the social worker arranges for social services and helps the person
who needs them make an optimum selection from the services this person is going
to be granted.
It is determined in the Social Services Act that a social worker
• should make social studies,
• ensures the social agenda, including
• the solving of social law problems in institutions that provide
– social services,
– counselling services in matters pertaining to social law,
– analytical, methodological and conceptual activities in the social sector
– professional activities in institutions that offer social prevention, early-
detection measures,
– help in the event of crisis,
– social counselling services, and
36
Certain services are, by law, free of charge. With regard to persons dependent on long-term care,
this may be the following: social counselling services; crisis assistance via telephone; long-term
care for young persons; follow-on treatment; activating services for families with children and for
senior citizens, as well as for persons with disabilities; social rehabilitation and services provided
in socio-therapeutic workplaces.
37
In 2010, approx. 56,000 worked in a main employment relationship in this field of occupation.
See statistical analysis of the Czech Ministry for Labour and Social Affairs (Cz.: Statistická
analy´za MPSV) available at: http://www.mpsv.cz/files/clanky/9198/Analyza_fin_SS.pdf, str.
8 (cited: 25 April 2013).
38
Cf. Formation Report (2005).
– social rehabilitation.
gewähren.
Hence, the social worker does not directly offer the services him-/herself. The
role of the latter is rather to coordinate the services, find clients and possibly
provide counselling services.
It may be deemed very appropriate that the requirements for exercising this
profession have been specified by law. This has made it possible to adhere to a
certain level of quality of social work, with this field being recognised by society as
a profession that requires certain legislative adjustment. However, experience from
day-to-day practice shows that this legal regulation does not even go far enough.
That is why a legislative proposal on social workers is currently being prepared.
The law, once in force, shall regulate the profession in a completely autonomous
way. At the same time, this would lead to the foundation of a professional institute
which would unite all social workers. At the same time, an institution of this sort
would, in a certain way, act as a guarantor for the quality of its members. Such a law
should also lay down much more detailed conditions for exercising the profession
of social worker and also the obligation to undergo further training, for example.
The basic requirements for exercising this profession are:
– legal capacity,
– an impeccable police clearance certificate,
– a suitable health condition, and
– professional qualification.
In light of the above-mentioned, often demanding tasks that are to be performed
by the social worker, the law focuses first of all on the professional qualification.
The profession of social worker cannot be practised without a specialised, higher
vocational education.
The law establishes an obligation for social workers to undergo further training
and also lays down further rules for the accreditation of educational institutions and
their training programmes.
As to the field of social services, the focus is not only on social workers,
however. Also the so-called social service employees and the medical and educa-
tional staff represent an important part of the social service personnel. While, for
the medical and educational staff, the conditions regarding their activities are laid
down in special legal rules referred to by the law, the conditions to perform the
activities of social service employees are directly specified in the Social Services
Act (Art. 116, Para. 1 of the Social Services Act).
As is the case with social workers, exercising an activity in the field of social
service provision requires the capacity to perform legal acts, a police clearance
certificate, and suitability for the job in terms of health and professional qualifica-
tion. The requirements regarding the professional qualification of social service
employees are not as high those applicable to social workers. However, at least one
accredited qualification course must have been completed so that the person in
question—if admitted to provide long-term care to a bed-bound person, for

instance—does not face the task unprepared.
The law defines in more detail who is to be regarded as an employee in the field
of social service provision,39 a fact which at the same time specifies a broader range
of content regarding social work. A social service employee is a person who
performs the following tasks:
(a) direct provision of care to a person in outpatient or residential social institu-
tions; this work includes:
– training of certain activities of daily living,
– help with personal hygiene and dressing,
– help with handling technical and medical devices,
– laundry services,
– maintaining cleanliness and personal hygiene,
– supporting a person’s autonomy
– strengthening life activation,
– establishing basic social and societal contacts, as well as
– satisfying the psycho-social needs of the person in care;
(b) basic educational, non-pedagogical activities, which comprise:
– the consolidation of fundamental hygienic and social behavioural norms,
– working towards the creation and development of work routines, manual
skills, working activities,
– the pursuit of leisure activities to develop the individual personality and the
person’s own interests,
– the promotion of creative activities via the arts, music and physical exercise,
– ensuring the participation in cultural activities and activities of individual
interest,
(c) long-term care provision in a person’s domestic setting; this work comprises:
– the carrying out of activities in direct contact with persons suffering from
physical or psychological impairment,
– performing complex household tasks,
– ensuring social support,
– early identification of social difficulties under the supervision of a social
worker,
– assistance in establishing social and societal contacts and psychological
activation,
– ensuring the organisational provision and complex coordination of long-term
care, as well as
– the provision of personal assistance;
39
Cf. § 116 Act No. 108/2006 Coll. on Social Services.
(d) under the supervision of a social worker:

– activities involving basic social counselling,
– activities regarding early identification/detection
– educational and activating activities concerning the establishment of contacts
with the immediate social environment,
– Activities and assistance regarding the assertion of rights and justified inter-
ests with respect to handling personal affairs.
A person working in the social services sector therefore plays a key role in the
professional provision of long-term care, to the effect that the person dependent on
long-term care can remain in his/her domestic surroundings and is activated in a
manner to be integrated into social life in the best possible way.40
4 Concluding Remarks
Finally, it can be concluded that the Czech Republic is still no promised land,
neither for persons in need of long-term care, nor for those providing long-term care
to these persons.
The fundamental reform of the entire social assistance system in 2006, with the
particular objective of introducing a new approach to benefits and services granted
to persons in need of assistance, was doubtlessly a step forward in the right
direction. The previous system had become completely inappropriate, at least
since the beginning of the democratisation of Czech society, and did not correspond
to the basic requirements regarding the functioning of any social assistance system.
In fact, it did not conform to the obligation to respect the human rights and
especially the client’s dignity. The social assistance system that is defined under
both the Social Services Act and the Act on Disability Benefits, however, is based
on the clients’ dignity and on their protection against social exclusion.
As already emphasised in this study, it is encouraging that the so-called care
allowance is a common feature in the social assistance system. The benefit is a
modern benefit and is made available directly to the person in need of long-term
care (and by no means to the person providing long-term care as it was previously
the case), with the amount being granted on the basis of several levels according to
the degree to which the recipient depends on assistance from another person.
The extent to which a person is dependent on the assistance of another person
represents the basic criterion for the determination of an entitlement not only to care
allowance but also to certain rights, as for instance in connection with the
40
The promised new Act on Social Workers has even not been delivered to the Lower House of the
Parliament. As experts disclosed the main reason was a lack of consensus and inability to find a
constructive solution. The law had to regulate terms and conditions of social work for all social
workers, professional growth opportunities, professional position and protection of the profes-
sional status.
employment status of the person who provides care to a family member dependent
on long-term care. The level of dependence is determined according to the number
of areas of care which the person can no longer cope with autonomously and for
which he or she needs the assistance of another person. Seen from this perspective,
the Czech social protection system for persons dependent on long-term care can be
perceived as a system pursuing a concept that brings relief only in the case of
certain needs (satisfaction of individual needs). One might even say that the Czech
system fosters passiveness, to a certain extent, and that it prompts clients to apply
for long-term care, rather than actively improve or resolve the situation themselves.
Such a conclusion can also be reached when reflecting the inadequacies of the
system as addressed above. When applying the social assistance system in practice,
the duration of the procedure for the recognition of or an increase in care allowance
is very problematic, for instance. The fact that one has to wait a long time to be
granted the allowance (also if it is subsequently reimbursed) considerably jeopar-
dizes the autonomy of persons dependent on long-term care and in many cases
obliges them to opt for a residential facility instead of having the necessary long-
term care ensured in their own domestic setting.
Another shortcoming in many regions is the absence of an adequate range of
services, and especially of services that are needed in cases of intensive care.
Especially in small municipalities it is merely impossible to be provided the
necessary services in one’s own home so that persons dependent on long-term
care are left with no other choice than to move to the nearest bigger town to be
provided the services there by way of being accommodated in a social service
institution.
As no sufficient number of social workers is available in the field of social
services (the same is true for medical services), there is often no one who might
advise or help a person dependent on assistance in matters concerning long-term
care in the domestic setting. Providing intensive care in the domestic setting (for
instance also in terms of home care) is a very demanding task which a person in
need of long-term care generally cannot cope with alone, without any help from
another person. In this area, it would be very helpful if the legislation as well as the
practical implementation were changed. This would, however, imply an increase in
the financial resources available for this area. These resources could, however, be
offset against the number of nursing places no longer required in the social care
facilities. Above all, this would require both a change in the way of looking at the
entire issue and a preference for domestic over institutional long-term care. Often,
this is unfortunately not always a matter of course, not even for social workers—
e.g. those working in health care institutions.
Everyday practical experience regarding the decisions on entitlements of per-
sons dependent on long-term care also testifies to a lack of user friendliness and
ultimately gives rise to a number of problems. Indeed, efforts were made towards
centralising decisions at the regional branches of the Czech Employment Office.
Given the fact that health assessments still remained the prerogative of the local
administrations of the social insurance institutions, and considering that the
regional branches of the Czech Employment Office were faced with a tremendously
high number of requirements regarding the agenda, the individual contact points for
care provision have remained fragmented and insufficiently interconnected, as it
was the case in former times. Hence, clients must still have their entitlements settled
at different places, a fact which is particularly problematic for persons dependent on
long-term care who are often very restricted in their movement.
The unsuccessful S-Card project brought with it a great deal of insecurity and
negative emotions. At present it is therefore not completely clear how the benefits
and services shall be paid and whether the card shall serve payment purposes and
constitute, at the same time, an ID featuring the person’s degree of disability.
It can be said, however, that, on the one hand, the protection of the rights of
persons who decide to informally care for generally one family member is of a
relatively high standard in the Czech Republic, especially as far as labour law and
pension entitlements are concerned. On the other hand, these persons are not
entitled to any financial benefits from the social system, except for foster parents,
for example, who take care of a child with health-related impairments. The benefits
for such foster parents increase in relation to the level of dependence of such a child
on the help of another person. As a rule, however, caregivers are not entitled to a
specific financial benefit. Most families therefore cope with the prevailing situation
by striving to make available professional long-term care to the family member
concerned. In comparison, pensioners often care for a family member (generally
elderly parents). This situation conforms to the natural life course, and the fact that
one parent passes his/her care allowance on to them is often a welcome opportunity
to augment the family income.
For the person in need of long-term care such a solution is, in most cases, more
acceptable and more favourable than being forced to opt for moving into a care
facility, usually for the rest of her/his life, where all services (often also those the
person dependent on long-term care does not need or ask for) are offered, yet often
not at a sufficient and personal level. Especially the fact that in the Czech Republic
institutional long-term care is still being preferred over home care, both adminis-
tratively and financially, gives rise to the following statement: It looks like it will be
a long time before the whole of society changes its attitude towards long-term care
that is required by one person from another person and before we can say that the
Czech Republic is a promised land for both those who are in need of long-term care
and those who provide it.
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Long-Term Care Benefits under the French
Social Protection System
Otto Kaufmann
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94
2 On the Concept of “Long-Term Care Dependency” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
2.1 Long-Term Care Dependency in the Current French System . . . . . . . . . . . . . . . . . . . . . . . 95
2.2 Necessity to Differentiate from Other Cases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
3 First Measures to Protect Against the Risk of Long-Term Care Dependency . . . . . . . . . . . . 96
3.1 General Background Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
3.2 Experimental Long-Term Care Provision: First Specific Protection Against
the Risk of Long-Term Care Dependency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
3.3 Specific Dependency Benefit: prestation spécifique dépendance . . . . . . . . . . . . . . . . . . . . 99
4 Current Long-Term Care Provision: Personalised Autonomy Benefit (allocation
personnaliseé d’autonomie—APA) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
4.1 Overview and General Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
4.2 Eligibility for Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
4.2.1 General Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
4.2.2 Long-Term Care Dependency: Determination of the Degree of Long-Term
Care Dependency on the Basis of the AGGIR Evaluation Table . . . . . . . . . . . 102
4.3 Provision of Long-Term Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
4.3.1 APA Benefit/Service Provision in the Person’s Home . . . . . . . . . . . . . . . . . . . . . . 103
4.3.2 APA Benefit in the Event of Accommodation in a Care Facility . . . . . . . . . . . 105
5 Other Forms of Long-Term Care Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
5.1 “Action sociale” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
5.2 Social Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107
5.3 Residential Homes for Elderly Persons Dependent on Long-Term Care . . . . . . . . . . . 108
5.4 Domestic Help for Persons Depending on Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . 108
5.4.1 Long-Term Care and Medical Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108
5.4.2 Domestic Care Services (service de soins a domicile, SSAD) . . . . . . . . . . . . . . 109
5.4.3 General Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
5.4.4 Domestic Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
5.5 Other Open Help Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
5.6 Semi-Inpatient Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112
O. Kaufmann (*)
Max-Planck-Institute for Social Law and Social Policy, Munich, Germany
e-mail: otto.kaufmann@orange.fr

https://doi.org/10.1007/978-3-319-70081-6_4
94 O. Kaufmann
6 Organisation and Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112

6.1 Organisation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112
6.2 Financing of the APA Benefit/Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
6.3 Remuneration of Benefits and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
6.3.1 Accommodation Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
6.3.2 Long-Term Care Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
6.3.3 Costs for Medical Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
7 Statistical Data (Tables 2, 3, 4 and 5) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
8 Monitoring of Benefits and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
9 Long-Term Care Insurance as an Independent Insurance Branch? . . . . . . . . . . . . . . . . . . . . . . . . 117
9.1 Stages Leading to an Independent Social Security Branch and the Main Obstacles
Regarding the Establishment of an Independent Insurance Branch . . . . . . . . . . . . . . . . . 117
9.2 Protection Against the Risk of Long-Term Care
Dependency Via Private Insurance? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
9.3 A Law for Maintaining One’s Personal Autonomy? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
1 Overview
The current French long-term care social protection system is an incomplete set of
measures that is an interim result of various experimental phases. For some time
now, the debate around an independent social security branch has also included the
search for possibilities to offer protection against the risk of long-term care depen-
dency by forms of security governed by private law. Thus, the creation of an
independent risk category has, at least, been put to the test.1 This is also why, in
order to understand the overall system, the temporarily discussed issue of a poten-
tial private insurance is to be taken into account. This solution is given little chance,
however, mainly for financial reasons. Former president Sarkozy who, during his
election campaign in 2007, showed a keen interest in introducing long-term care
insurance, did not pursue this project in his actual term of office. After the election
of François Hollande the issue of protection against the risk of long-term care
dependency came to the fore again, and in 2014 a reform of the protection against
the risk of long-term care dependency was to be carried out. Indeed, such a reform
is in progress and at a relatively advanced stage due to the preparation of a draft
proposal by the council of ministers; however, only a part of the measures aiming at
protection against the risk of long-term care dependency is intended for reform. In
2015 a reform concerning a part of the specific help system,—APA Benefit—
especially for the Persons staying at their home was decided (see below).
Given the structure and conception of the French social security system, the
question arises whether the risk of long-term care dependency constitutes a social
risk in terms of social security, as would be the case for independent risks in other
insurance branches. For the risk of long-term care dependency in the narrower
sense, particularly as opposed to the social risk of illness, is not included in any
1
Vasselle (2011).
Long-Term Care Benefits under the French Social Protection System 95
social insurance branch and is not covered by the system of social security (sećurite´
sociale). For this reason, long-term care dependency is—a priori—not a risk that is
covered by the social security system, as it is understood in France. An essential and
characteristic feature of the protection system against the risk of long-term care
dependency is the link between the risk and the age of the person involved.
2 On the Concept of “Long-Term Care Dependency”
The concept of long-term care dependency (dépendance) can only be fully under-
stood when looking at the overall environment of those dependent on long-term
care within an evolutionary perspective. Long-term care dependency is understood
as a social problem that has been addressed in various ways over time; however, the
social assistance approach has always prevailed. Long-term care dependency is,
above all, considered in connection with age. It is a social problem that is only
acknowledged as such for persons above a certain age. Long-term care dependency
is therefore regarded as a problem related to age, and thus the term has a different
connotation in France than in countries where this risk is not based on age, but
exclusively on physical or psychological impairments and the required need for
help ensuing from this condition. It is a fundamental distinction which should,
however, not make a big difference since in most cases long-term care dependency
becomes a relevant topic only later in life.
2.1 Long-Term Care Dependency in the Current French

System
Only if a particular situation becomes a social problem to the extent that the person
involved is dependent on help from others will long-term care dependency be
acknowledged as an independent risk in terms of the specific protection against
this risk. The need for help with the activities of daily living or for permanent
attendance to be provided to persons dependent on long-term care is a vital
condition for the acknowledgement of long-term care dependency. There are
various degrees of dependency, however. The main objective is to maintain the
autonomy of the dependent person.
2.2 Necessity to Differentiate from Other Cases
The need for care, i.e. the contingency of long-term care dependency, can also
affect persons who do not fulfil the aforementioned conditions (especially with
regard to age). Differentiation based merely on the competence of a specific system
96 O. Kaufmann
is therefore not sufficient. Incidentally, this also shows with respect to the compe-
tences of the social security fund, which may also grant benefits or services to
persons with disabilities who are not dependent on long-term care. Apart from that,
various social security branches are competent, particularly the health and invalid-
ity insurance. Those affected in these two cases are long-term ill persons who
require similar care services, as well as invalids within the context of invalidity
insurance who receive benefits to compensate their reduced earning capacity.
Old-age security seeks to compensate deficits of the various kinds especially by
way of social action (action sociale) on the part of its funds. Persons who have
become dependent on long-term care due to an accident at work or occupational
disease are provided for by the workplace accident insurance. Persons with disabil-
ities can, from the area of social assistance, receive special help services that
constitute a system of its own: the allocation aux adultes handicape´s (AAH)2 for
persons with disabilities aged 20 years and older, or the allocation d’e´ducation de
l’enfant handicape´, (AEEH) for children. The various components of the social
welfare system can also become of importance in satisfying the demand for long-
term care services. All these systems do not explicitly focus on long-term care; yet,
the beneficiary may receive services of this kind, if required.
3 First Measures to Protect Against the Risk of Long-Term

Care Dependency
3.1 General Background Information
In 1908 a system was established with a view to providing assistance to old persons.
The objective was, in fact, to provide help to frail persons who required assistance
and who were, from a present-day perspective, considered to be dependent on long-
term care.
In the 1950s, the first regulations on household assistance for elderly persons
were enacted. Those affected—then as now only including persons who have
reached the statutory retirement age—were also given the option of accommoda-
tion in appropriate residential facilities. Yet, even at this initial stage of designing
protection against the risk of long-term care, provision of care in the person’s home
was given priority over accommodation of the latter in residential facilities. The
maintenance of the autonomy of the person dependent on long-term care was of
prime importance.
From the 1960s onwards, the situation of long-term care was recognised in its
dimension as a social problem, and further measures to fight this risk were consid-
ered and also realised. This was effected by way of transferring certain tasks from
2
Dossiers solidarité et santé, n 49, 2013.
the field of long-term care to the field of old-age insurance, as well as by founding
the action sociale de l’assurance vieillesse,3 whose measures are also carried out by
old-age insurance.4
Some of the official reports (rapports) on old-age security prepared and
published since 19625 also focused—often indirectly—on long-term care, with
the earlier ones in particular being significant for the understanding and interpreta-
tion of the French concept of long-term care. In 1970 a first report on the risk of
long-term care dependency was presented—the actual term long-term care depen-
dency (de´pendance) dates back to this time—and mention must also be given to the
Braun Report of 1988,6 which considerably contributed to anchoring the term in the
“political conscience”, as well as the Schoepflin Report of 1991,7 to mention only a
few among the many.
The Schoepflin Commission, who produced the report of the same name, has
isolated long-term care dependency from age or a particular illness in terms of its
impact on the individual. Accordingly, a person dependent on long-term care is
defined as an adult who is dependent on help with regard to at least one third of the
activities of daily living such as getting dressed or carrying out personal hygiene,
and who is not capable of carrying out these activities without assistance and of
living in a standard-equipped dwelling by him- or herself.8 Yet, an essential feature
of the protection system against the risk of long-term care dependency is the linkage
of risk and age, as long-term care dependency is generally regarded in connection
with ageing. This is a fundamental distinction which should, however, not make a
big difference between systems of different approaches, since long-term care
3
On the commented translation of technical terms in the security system see Kaufmann (2004).
4
Action sociale, which is executed by the various funds of all insurance branches, is of significance
in all areas of social security and also benefits elderly persons. An action sociale in terms of a field
of responsibility of the various social security institutions is executed, for example, if social
measures are planned and carried out in particular areas of social security that are not yet
institutionalised to the extent that fulfilment of a relevant requirement would automatically
constitute a legal right. Action sociale is, possibly, the most adequate instrument for the realisation
of new social protection mechanisms. Especially since it is not subject to any particular con-
straints, especially of an institutional nature, it can open up “testing grounds” (services, facilities,
benefits in cash or kind, welfare in general) and potentially prepare a later institutionalisation of
the service branch or, respectively, form of service thus created. Apart from the social security
funds or, respectively, social security providers that run a semi-public action sociale, it is also the
territorial entities, and the French departments in particular, that tend to effect a public action
sociale. Both areas are supplemented by a private action sociale, which is mainly carried out by
associations, especially welfare organisations (associations). Particularly with a view to the living
conditions of elderly persons, action sociale is an essential field of activity of the French
departments.
5
Rapport Laroque (1962) sur la politique de vieillesse.
6
Rapport Braun and Stourm (1988).
7
Rapport Schoepflin (1991).
8
Rapport Schoepflin (1991).
98 O. Kaufmann
dependency usually becomes a relevant topic later in life but can, unfortunately,
also affect young people.
The ‘Orientation Law in favour of Persons with Disability’ of 19759 opened up
ways of protection in the case of long-term care dependency, particularly through
the granting of special cash benefits (allocation compensatrice).10 This benefit was
originally intended for adults with disability but was often (in 60% of cases) granted
to elderly persons. It served to cover the costs of a care attendant where required.
This may be a person from the social environment of the beneficiary, any other
person providing care, or care personnel from an accommodation facility. In any
case, the help service had to be effectively rendered, which could be reassessed by
the competent bodies of the action sociale of the respective French department. The
benefit was earnings-related and amounted to between 40% and 80% of the
allowance usually awarded to pay for the services of a care assistant in the case
of a third category disability. Since these protection mechanisms for persons
dependent on long-term care proved to be unsatisfactory, the aim was—and still
is—to find a lasting solution.
It was particularly the responsibility of the health and old-age insurance schemes
to provide benefits to persons dependent on long-term care.11 Certain benefits (cash
benefits or accommodation in particular care centres) may also be granted within
the context of social assistance schemes. Protection in the event of long-term care
dependency is thus guaranteed both on a “medical” and on a “social” level. The
medical scope is covered by social insurance and is applicable to all cases that are
defined as illness-related. The social scope is dependent on the action sociale and is
financed via the various French territorial entities. This is of significance for elderly
persons particularly with regard to accommodation in a care facility.
3.2 Experimental Long-Term Care Provision: First Specific

Protection Against the Risk of Long-Term Care
Dependency
From 1995 onward, a provisional “experimental” insurance (expe´rimentation de la

prestation de´pendance) was tested. It was limited in time and geographically and
did not constitute an all-encompassing “long-term care insurance” since the per-
sonal scope, in particular, was very restricted.12 The then new protection system
was to be realised at department level. This, however, opened up the possibility to
9
Act No. 75-534 of 30 June 1975, OJ 30.6./1.7.1975.
10
Igl (1987).
11
Kaufmann (1996), p. 325.
12
Law of 25 July 1994 (loi n 94-637), OJ 27.7.1994. Martin (1998), p. 69; Kerschen (1998), p. 75.
Riehm-Cognée (1992). Kessler (1992), Revue de droit sanitaire et social, RDSS, n 3 (Special
Issue).
implement different detailed regulations and thus, national standards were sought in
order to ensure consistency throughout France. The French Ministry of Social
Affairs and Health, the national old-age provision fund CNAV and the Standing
Commission of the presidents of the General Councils (executive level of the
departments) jointly defined the necessary legal, technical and financial basic
framework for the realisation of the protection system. It was also decided to
establish a long-term care insurance system that was to become effective in 1996
but then was postponed mainly for financial reasons—and a final decision has not
yet been made. The benefits from the expe´rimentation de la prestation de´pendance
were intended for elderly persons in need of long-term care.
The need for long-term care dependency was assessed according to a set of
medical/social criteria adopted at national level (grille nationale d’e´valuation
“autonomie, gérontologie, groupes iso-ressources”, AGGIR). The applicant was
assessed by a team of socio-medical experts (e´quipe sociale ou me´dico-sociale),
who took into consideration the closer environment of the person in need of long-
term care in order to evaluate the level of loss of autonomy of the latter in this context.
The experimental long-term care benefit (prestation expe´rimentale de´pendance,
PED) comprised two partial payments that could be granted either on a cumulative
or an alternate basis. It consisted of a care allowance for the employment of third
persons (allocation compensatrice pour tierce personne, ACTP) and a supplemen-
tary attendance benefit (prestation supple´mentaire de´pendance). The amount of the
monthly benefit was limited and was granted by the old-age pension fund CNAV for
a period of one year in consideration of the earning capacity of the insured person.
The ACTP benefit was paid from the insurance system. The PSD benefit was
granted from the budget of the action sociale, which is created by the CNAV.
3.3 Specific Dependency Benefit: prestation spećifique

de´pendance
In 1997 the prestation spećifique de´pendance, i.e. the specific dependency benefit,
was established by law. The act concerning the PSD was expressly deemed to have
been enacted in anticipation of further measures that were to be established at a later
stage. This act already focused on the necessity of permanent attendance to be
granted to the person dependent on long-term care.13 Due to the introduction of the
PSD, which was granted according to similar criteria as are applicable to social
assistance, the principle of equality with regard to the awarding of benefits ceased to
apply as competences regarding this benefit were transferred to the individual
French departments. The latter were authorised to stipulate and apply their own
rules with a view to the awarding of benefits and thus even define the respective
13
Art. L. 232-1 CASF (Code de l’action sociale et des familles, Code of Social Action and the
families).
100 O. Kaufmann
access requirements. From this resulted a considerable disparity in the access to and
granting of benefits. The benefit was earnings-related and the law provided for the
recourse to the personal assets of the person dependent on care.
4 Current Long-Term Care Provision: Personalised

Autonomy Benefit (allocation personnaliseé
d’autonomie—APA)
The personalised autonomy benefit (APA), an assistance service to help maintain

the autonomy of persons dependent on long-term care, replaced the specific depen-
dency benefit (PSD) in 2002. The original objective was, in fact, the creation of a
new social security branch in the future.
4.1 Overview and General Remarks
Long-term care dependency is understood as a social problem that has been

addressed in various ways over time; however, the social assistance approach has
always prevailed. The act underlying the current long-term care protection system
regarding the APA14 is to form a general legal basis going beyond the conventional
rules of social assistance, even if the system actually uses a social assistance
approach. The APA was also introduced with the aim of forming an instrument
of social welfare that is not operated on a subsidiary basis as was priorly the case.
The relevant regulations are to be found in the French Family and Social Action
Code (code de l’action sociale et des familles—CASF). It is a tax-financed social
security benefit based on national solidarity; however, it is not directly connected to
the social assistance system (aide sociale).
The APA system provides for the payment of a cash benefit or accommodation
of persons of 60 years of age or older who require assistance with the activities of
daily living or permanent attendance.15 The APA is a benefit in kind based on the
required supporting measures, with cash benefits also counting as such. There is a
care catalogue defining the different benefit categories and respective care services
to be granted; there are no statutory guidelines for the awarding of benefits other
than that. The main objective is to maintain the autonomy of the dependent person.
The universal legal right that can be claimed if the requirements for receipt of
this benefit are met, also and particularly ensures that APA benefits cannot be
denied if certain income limits are exceeded.
14
Act 2001-647 of 20 July 2001, OJ (Official Journal) 21 July.
15
Joël et al. (2010); Frinault (2005), p. 607.
The concept of long-term care dependency only becomes fully discernible in the
context of assessing the overall environment of the person dependent on long-term
care from an evolutionary perspective. What is essential is the state of health of the
dependent person who wishes to receive APA benefits, with the maintenance of
personal autonomy being the priority. Only if a particular situation becomes a social
problem to the extent that the person involved is dependent on help from others will
long-term care dependency be acknowledged as an independent risk in terms of the
specific protection against this risk. The need for help with the activities of daily
living or for permanent attendance to be provided to persons dependent on long-
term care is a vital condition for the acknowledgement of long-term care depen-
dency. There are various degrees of dependency, however. The amount of the
benefit is fixed according to the income and the degree of loss of autonomy of the
person dependent on long-term care. It is determined according to the principle of
co-payments in social security law.16 One important new aspect in this context is
the fact that persons dependent on long-term care are no longer obliged to pay for
services from their personal assets. However, this only applies if the benefit is
financed by the department. In the case of accommodation in a socio-medical
facility the latter can ask family members of the dependent person to cover the
costs if they are liable for maintenance.
A differentiation between the risk of long-term care and other risks and situa-
tions is essential, since the need for long-term care, i.e. dependency on the latter,
may also affect persons who—particularly with regard to age—do not meet the
aforementioned conditions regarding eligibility for long-term care benefits.
Differentiation based merely on the competence of a specific system is therefore
not sufficient. Incidentally, this also shows with respect to the competences of the
social security fund, which may also grant benefits or services to persons with
disabilities who are not dependent on long-term care. Apart from that, various
social security branches are competent, particularly the health and invalidity insur-
ance. Those affected in these cases are long-term ill persons who require similar
care services, as well as invalids within the context of invalidity insurance17 who
receive benefits to compensate their reduced earning capacity.
4.2 Eligibility for Benefits
The conditions to be met are, on the one hand, of a formal nature, particularly with
regard to the application for long-term care benefits. On the other hand, of course,
the actual physical and psychological impairments are to be of a specific severity.
16
Supplementary co-payment after balance of medical bills (ticket modérateur). It is the difference
between the tariffs agreed on by the health funds and service providers and the amount assumed by
social insurance (Art. L. 322-2 CSS, Social Security Code). Introduced in the 1930s, the aim had
from the outset been to reduce the use of medical services to the necessary minimum.
17
Kaufmann (1998), p. 151.
102 O. Kaufmann
4.2.1 General Requirements
Several conditions must be fullfiled the applicant for an APA benefit may receive a
benefit in kind if he or she can prove permanent residence in France and if all further
requirements, particularly with regard to age and to loss of autonomy, are met.18
Even though citizenship does not play a role with a view to the receipt of benefits
as such, citizens from other EU countries applying for benefits are required to have
their permanent residence in France. Persons without a permanent residence may
register under the address of care facilities approved for this purpose.
The APA benefit/service is granted for persons aged 60 and over.19 This age
limit has, so far, not been adjusted analogously to the raising of the age limit in
old-age insurance after the 2010 pension reform.20 The third condition is the loss of
the capacity to act independently (loss of autonomy). Loss of autonomy is assessed
with the aid of a nationally valid evaluation table. Incidentally, the assessment
criteria are now to be construed in such a way that psychological impairments can
be better taken into account.21 However, this process may still be deficient in that
only part of the persons with psychological impairments actually has them
diagnosed.22
4.2.2 Long-Term Care Dependency: Determination of the Degree

of Long-Term Care Dependency on the Basis of the AGGIR
Evaluation Table
The AGGIR Table (autonomie, ge´rontologie, groupes iso-ressources), according to

which the degree of care support required is determined, contains six categories of
long-term care dependency:
Category I refers to elderly persons who are confined to bed or to an armchair
and whose intellectual capacities are gravely impaired; as a result, these persons
require the permanent attendance of a third person.
Category II comprises two groups of persons: First, persons who are confined to
bed or to an armchair and whose intellectual capacities are not completely impaired
and who also require an assistant to help them with most activities of daily living.
Second, persons whose intellectual capacities are impaired but who can move
around independently.
Category III comprises persons who have retained their intellectual capacities
and are partially capable of moving independently, but who require the assistance
of a third person several times a day in order to maintain their physical autonomy.
18
Art. L. 232-2 CASF.
19
Art. R. 232-1 CASF.
20
Kaufmann (2011a), p. 121. Kaufmann (2011b), p. 47.
21
D. n 2008-821, 21.8.2008, OJ. 23.8.
22
Alternatives Economiques, No. 085, April 2010.
Category IV comprises two groups of persons: First, persons who cannot get up
without help, but who, once “on their feet”, can move independently within their
homes. These persons require assistance with their personal hygiene and with
getting dressed. Most persons in this category can eat without assistance. Second,
persons who are not limited in their mobility, but who require help with their
personal hygiene and cannot eat without assistance.
Category V refers to persons who are able to move within their homes, eat and
get dressed without assistance. These persons require selective help with their
personal hygiene, cooking and housekeeping.
Category VI refers to persons whose autonomy is not impaired with regard to
any activities of daily living.
Persons falling under category I to IV are entitled to APA benefits.23
4.3 Provision of Long-Term Care Services
Long-term care services can be provided in a care facility or through a care assistant
in the person’s home. The APA benefit is a benefit in kind which is to cover the
expenses in the form of a compensatory service.24
4.3.1 APA Benefit/Service Provision in the Person’s Home
In 2015 the APA was partially reformed especially in favour of dependent elderly
staying at their home. The main objects of this reform were to take better in count
the dependent needs, to propose better condition for the members of the family who
apport help to the dependent and to optimise the APA Organisation.25 APA
benefits/services for persons dependent on care and living in their own homes
cover the expenses specifically elaborated for each case by a team of socio-medical
experts. This cost schedule includes payment of the care personnel, expenses for
temporary long-term care provided in a facility, as well as the costs for transport,
any other technical aids, modifications to the person’s home where required, and
any further costs that cover measures to help maintain the beneficiary’s auton-
omy.26 The costs incurred in the implementation of the drafted care programme are
fixed under consideration of the applicable labour law regulations and the minimum
public sector standards. In the case of a major loss of autonomy and if the care
programme provides for the deployment of a third party, the APA benefit is used
23
Art. R. 232-4 CASF.
24
The APA service is not identical with the purely medical services that are usually covered by the
health insurance.
25
Act No 2015-1776 of 28 December 2015.
26
Art. R. 232-8 CASF.
104 O. Kaufmann
directly for the remuneration of the latter, except if the beneficiary expressly objects
to such a solution. A third party assistant is a person certified within the meaning of
the requirements provided for in the French Labour Code.27 Beneficiaries entitled
to this service are defined as persons who are dependent on long-term care and who,
due to their physical and psychological condition, or due to lack of a family or
social contacts require the assistance of a third person.
This generally applies to persons falling under the AGGIR categories I and II.28
If the beneficiary refuses to be assisted by a certified person and instead employs
a non-certified domestic help in accordance with the requirements set in the Labour
Code, or if the person employed is not commissioned in terms of the action
sociale,29 the APA benefit is increased by 10%. This also applies if the beneficiary
directly employs a person who has no work experience or whose professional
qualifications do not correspond to the ministerial requirements.30 The beneficiary
may employ a family member as a third party assistant, with the exception of
spouses, life partners or the person with whom the beneficiary has concluded a civil
solidarity pact (pacs).
The amount of the APA benefit depends on the needs of the beneficiary;
however, there is an upper ceiling for the care programme that is fixed according
to the respective loss of autonomy.
Persons dependent on long-term care belonging to category I (grille nationale
AGGIR) receive up to 1.19 times the amount necessary for employing a third person
for assistance.31 Persons dependent on long-term care belonging to category II
receive 1.02 times this amount; persons in category III receive 0.765 times this
amount; and persons in category IV are entitled to 0.51 times this amount.32
The beneficiary has to make co-payments according to his income. The calcu-
lation of these co-payments is based on the tax declaration of the beneficiary on the
one hand, and on the sum of movable and immovable property on the other. It is of
vital significance as to whether or not the real estate property is the beneficiary’s
principal residence inhabited by himself.
Certain forms of income are not taken into account; this includes war pensions,
life annuities or contributions from the beneficiary’s children to cost coverage in the
event of a loss of autonomy of their parent(s). Certain social security benefits are
not taken into account either.
If the beneficiary’s income is below a particular limit,33 no co-payments need to
be made on his or her part.
27
Art. L. R. 232-8 C. T. (code du travail, Labour Code).
28
Art. R. 232-12; R. 232-13 CASF.
29
Art. L. 7232-1 ff. C. T.
30
Art. R. 232-14 CASF.
31
Art. L. 355-1 CSS.
32
33
0.67 times the benefit for permanent assistance from a third person.
The beneficiary has to make co-payments if his/her income is up to 2.76 times

the benefit granted for permanent assistance from a third person, in accordance with
the following formula:
A x ½R ðS x 0; 67Þ=S x 2 x 90%
A ¼ actual costs of that part of the care programme that is utilised by the
beneficiary
R ¼ beneficiary’s monthly income
S ¼ benefit amount paid for permanent assistance from a third person
If the income of the beneficiary exceeds 2.67 times the benefit amount granted
for the permanent assistance of a third person, the beneficiary himself must pay
90% of the costs of the part of the care programme that he/she utilises.
4.3.2 APA Benefit in the Event of Accommodation in a Care Facility
The APA benefit may be suspended if the beneficiary does not fulfil his/her
obligations and, in particular, does not make co-payments or submit the requested
cost statements.
The team of socio-medical experts may recommend the discontinuation of
benefit payments if the beneficiary does not comply with the care programme, or
if the services provided for might cause harm to the beneficiary.34
The APA benefit for persons accommodated in a care facility is to help the
beneficiary cover the costs for such accommodation. The respective amount is
calculated according to the degree of loss of autonomy on the part of the beneficiary
in relation to the costs payable for long-term care services provided in the relevant
care facility. Still, the beneficiary has to make a co-payment.35 The respective long-
term care facilities conclude agreements with the president of the Regional Council
and with the State in order to set the framework for cost coverage with regard to
persons whose long-term care dependency exceeds a certain level (GIR moyen
pondéré, GMP 300).36 Persons dependent on long-term care are generally accom-
modated in a care home for dependent elderly persons (EHPAD—établissement
d’hébergement pour personnes âgées dépendantes). An EHPAD is a socio-medical
facility with special care programmes and with an adequate infrastructure designed
particularly for elderly persons who are disabled or in need of long-term care. The
facility can be organised under public or private law and be either non-profitmaking
or profit-oriented. In any case, prior authorisation must be obtained by the compe-
tent department authorities at its launch, i.e. by the chair of the General Council
(conseil geńe´ral) of the department (Elected executive at departement level) and by
34
Art. L. 232-7 CASF.
35
Art. L. 232-8 CASF.
36
Art. L. 313-12 CASF.
106 O. Kaufmann
the director of the respective regional health office (agence re´gionale de sante´). An
EHPAD must be entitled to offer its medical services to every person covered by
social security. This entitlement must be based on a five-year agreement concluded
between the facility, the State and the department. The agreement is to cover the
intended quality standards for the provision of care services and specify the running
costs for accommodation and provision of care to residents as well as the costs to be
borne by the beneficiaries (cf. below). It also regulates the tariff options for medical
services.
The accommodation contract concluded between the care facility and the person
dependent on long-term care or, respectively, his/her authorised representative
indicates the respective amount of co-payments even if no hospital services are
provided for.37
The income of the person dependent on care is taken into account, just as is done
with APA benefits unrelated to care home accommodation. A minimum amount is
to remain at the beneficiary’s disposal.38
5 Other Forms of Long-Term Care Assistance
The social security system includes various forms of assistance and measures for
the benefit of elderly persons dependent on long-term care that can be provided in
their homes or a care facility.39
5.1 “Action sociale”
Action sociale, which is executed by the various funds of all insurance branches, is
of significance in all areas of social security and especially benefits elderly persons.
An action sociale in terms of a field of responsibility of the various social security
institutions is executed, for example, if social measures are planned and carried out
in particular areas of social security that are not yet institutionalised to the extent
that fulfilment of a relevant requirement would automatically constitute a legal
right. Action sociale is, possibly, the most adequate instrument for the realisation of
new social protection mechanisms. Especially since it is not subject to any partic-
ular constraints, especially of an institutional nature, it can open up “testing
grounds” (services, facilities, benefits in cash or kind, welfare in general) and
37
Decree n 2004-1274 of 26 November 2004, OJ 27 Nov.
38
See also below.
39
It is to note that social Protection can be compulsory (protection provided by the Social Security
is in all cases compulsory) or provided by volunteer measures. Social Protection other than This of
the compulsory Social Security can be compulsory but has not to be so.
potentially prepare a later institutionalisation of the service branch or, respectively,

form of service thus created. Apart from the social security funds or, respectively,
social security providers that run a semi-public action sociale, it is also the
territorial entities, and the French departments in particular, that tend to effect a
public action sociale. Both areas are supplemented by a private action sociale,
which is mainly carried out by associations, especially welfare organisations
(associations). A law enacted in 1975, i.e. the “Social Act” which is of major
significance in the field of eldercare (establishment of services and facilities),
provides a legal framework to institutions executing an action sociale.
The social security providers and compulsory complementary insurances carry
out an action sociale for the benefit of elderly persons. The CNAV, for instance,
executes an action sociale within the framework of a programme specified by
ministerial decree. It is financed from the old-age insurance budget and the fonds
national d’action sanitaire et sociale en faveur des personnes a^geés, FNASSPA.
The bodies responsible for the agricultural security system carry out measures in the
context of action sociale with the aim of improving the living conditions of persons
in need of help living in the countryside.
Particularly with a view to the living conditions of elderly persons, action
sociale is an essential field of activity of the French departments.
5.2 Social Assistance
Social assistance benefits from the system of the aide sociale are—just like the
minimum vieillesse (minimum old-age pension)—non-contributory benefits. Any
person older than 65 years of age (60 years in the case of incapacity for work) who
fulfils the necessary requirements and, in particular, can prove financial need is
entitled to receive domestic help or to be accommodated in a care facility. Domestic
help is usually provided in the form of benefits in kind; it may, however, also
consist in a corresponding cash benefit. The beneficiary is accommodated in a
private person’s home or in a care facility. Applications must be submitted to the
local authority in charge of the action sociale. An approval committee (commission
d’ admission) representing the various territorial entities decides on the approval or
rejection of the application. This committee determines the extent and scope of
benefits provision in the case of domestic help, the amount of costs granted if the
beneficiary is accommodated in a private person’s home, and it decides on whether
or not a beneficiary is to be accommodated in a care facility. In urgent cases, the
mayor of the beneficiary’s place of residence is authorised to make an instant
decision regarding immediate accommodation in a care facility or, respectively,
the approval of domestic help. In this case, too, it is up to the approval committee to
make the final decision. It stipulates the actual amount of benefits awarded. In doing
so, it must adhere to the statutorily defined income limits. The conseil geńe´ral on
the other hand may decide on more favourable approval conditions with regard to
domestic help services.
108 O. Kaufmann
5.3 Residential Homes for Elderly Persons Dependent

on Long-Term Care
Physically impaired persons or persons with behavioural disorders who, despite the
support of specific services, are not capable of leading their lives in their own
homes can be accommodated in special homes (maisons d’accueil pour personnes
a^geés de´pendantes, MAPAD or e´tablissements d’he´bergement pour personnes
a^geés de´pendants, EHPAD). These homes—not to be confounded with retirement
institutions for valid elderly—are institutions to which the Social Act of 1975
applies and which can be classed with the re´sidences-autonomie, formerly
logements-foyers particularly with regard to financing. Most of the MAPAD were
transformed in EHPAD, because the level of dependency of the concerned persons
is higher in this sot of institution. An EHPAD or MAPAD is to be incorporated in
municipal life in order to make it possible for pensioners to maintain their usual
routines and habits, and for their circle of acquaintances to visit them. The degree of
“external openness” varies, but social and societal contacts (services such as
hairdresser’s visits etc.) are maintained in any case. Many MAPAD have
disabled-friendly means of transport at their disposal. It should be pointed out,
that other institutions exits, especially for less dependant persons.
5.4 Domestic Help for Persons Depending

on Long-Term Care
The range of domestic help services is characterised by diversity, offering small

transport/delivery services much the same as medical care.
5.4.1 Long-Term Care and Medical Services
Long-term care with medical services provided to elderly persons in their own
homes is part of the standard domestic help programme and aims at preventing—or
at least delaying—accommodation in the socio-medical unit of an inpatient care
facility or, respectively, hospitalised long-term care; indeed, evidence suggests that
such accommodation often irrevocably alters the way a person lives. This not only
includes the changes incurred during the respective accommodation, particularly
during a stay in hospital, but also the continuous effects this may have on the well-
being of elderly persons—also with a view to a potential return to their homes. In
fact, the aim is also to enable these persons to return home as soon as possible after
their inpatient hospital treatment has ended. This is a second objective of domestic
help services.
Domestic help after a hospital stay has two components that may or may not
complement each other. On the one hand, this help may consist in medical
attendance; on the other hand, general long-term care service provision may be
warranted. In the first case, the attendance may be carried out independently or in
cooperation with the hospital. A solution for the latter is hospitalisation a domicile
(see b. below), which is characterised by continuous cooperation between the
hospital and the service provider. As opposed to the “standard domestic care
service” (service de soins a domicile, see a. below) “domestic nursing”
(hospitalisation a domicile) refers to attendance and treatment services that are
usually rendered in hospitals.
5.4.2 Domestic Care Services (service de soins a domicile, SSAD)
In the late 1970s, domestic care services were established on a trial basis; it turned
out to be a major success and was indicative of a positive future development of
these services. The domestic care services have the status of a socio-medical
institution within the meaning of the Social Act of 1975.40 Any costs incurred
can therefore be compensated for by the health insurance or, alternatively, by social
welfare. The SSAD offer their assistance both to elderly ill persons and to elderly
persons with disabilities or long-term care needs. While domestic services for ill
persons are usually provided on a temporary basis until the person has either
recovered or been hospitalised, provision of these services to persons dependent
on long-term care is not limited in time and is generally continued until the end of
their lives.
Eldercare services offer a comprehensive range of long-term care and attendance
services (maternage). The personnel are medically instructed to provide nursing
services or other types of care services to persons who are ill or impaired in their
capabilities and can no longer carry out the respective tasks themselves. In addition
to this, they may provide assistance with carrying out the habitual and necessary
activities of daily living, with the exception of household services (aide meńagère).
Furthermore, they may provide long-term care services through medical assistants
(auxiliaires me´dicaux) and furnish the medical aids (petit mate´riel me´dical) neces-
sary for their (nursing) care, with the exception of medicines.41
Far more than 80% of all care services cite preventive care measures, patient
hygiene and attendance (maternage) as their main tasks. Services of a more
technical nature (such as injections, wound dressing etc.) are only required for a
minority of those that need attendance.
40
Law No. 78-11 of 4 January 1978, Official Bulletin (Journal officiel, OJ 5 January 1978) in its
version as an amendment act to the Social Act of 1975.
41
Decree No. 180-448 of 8 May 1981, (9.8.1981); circular No. 81-8 of 1 October 1981,
B.O. affaires sociales (BOAS), fascicules spéciales No. 81/43.
110 O. Kaufmann
5.4.3 General Issues
Of great significance—both for the security of the domestic care service in its
function as an organised provider and for the person in their care—is the uncondi-
tional continuous disposability of services, with each service provider being obliged
to fulfil this condition in his own area of responsibility.42 The person dependent on
care can opt for the service provider of his or her choice. This means that the person
in care can both choose among the various approved service providers and entrust a
specific person with the provision of the care service(s) in cases where an approved
provider consists of more than one person. Domestic care services are intended for
persons of 60 years of age and older. Younger persons can make use of domestic
care services if they produce a medical certificate proving that their organism show
the characteristics of ageing or that they suffer from an illness resulting in disability
(maladie invalidante), and indicating their dependence on a domestic care service.
Thus, in the context of domestic care services the exclusive criterion of age is
expanded to the benefit of the individual and his/her essential needs. However,
despite this provision domestic care is—in more than 50% of all cases—provided to
persons who are older than 85.43
Another principle of the SSAD refers to the role of the treating physician. Only
he may initiate a domestic care service programme with costs covered; it is him
who decides on the type of service to be granted and him who carries the respon-
sibility. For having domestic care service provision granted, there is no need for
prior approval on the part of the health fund. This is to help prevent potential delays
in service provision, as this might have severely detrimental effects on an elderly
person in need of care. Yet, the decision of the treating physician is brought to the
knowledge of the me´decin conseil of the competent health fund, who can then carry
out a medical examination.
5.4.4 Domestic Nursing
Domestic nursing (hospitalisation a domicile, HAD) has existed since the 1960s
and dates back to two trials of this type of nursing care—one in a public hospital,
the other in a private clinic in Paris; these trials were extended to other major cities
in the following years. This kind of healthcare treatment was for the first time taken
into account by the legislator in the Hospital Reform Act of 1970.44 At the time it
was determined that any services offered by a hospital could also be provided in the
home of the patient with the involvement of the treating physician. This requires the
consent of the patient or his family. Thus, one precondition for the execution of
domestic nursing is prior hospital treatment. It has been determined by an
42
Art. 6 of Decree No. 81-448 of 8 May 1981.
43
Art. 1 Decree of 8 May 1981.
44
Law 70-1318 of 31 December 1970.
Amendment Act45 that an authorisation is required for private hospitals to carry out
domestic nursing, and that the latter must correspond to a definition laid down in a
provision. The announced provision has, so far, not been enacted, but the national
health fund (caisse nationale d’assurance maladie des travailleurs salaries,
CNAMTS) has laid down the basics of domestic nursing (hospitalisation a domicile)
in a circular (circulaire).46
In this circular, several types of domestic nursing are defined which are typically
provided in hospitals, but which are also suited for provision in the home of the
patient. This also includes elderly care. Domestic nursing is to be administered by
associations (associations) or by special units that form part of a hospital. A
patient’s early return home is regarded as an advantage, as this is expected to result
in better chances of recovery and easier social reintegration.
Domestic nursing shows some weaknesses, however. An essential one emerges
with a view to the cooperation between the hospital physician, the treating physi-
cian (family doctor) and, if applicable, the paramedical services. In this context,
financial extra costs may arise for the health insurance, particularly if the patient is
also granted household helps, as these would be omitted from the equation for
hospital stays.
5.5 Other Open Help Services
Elderly—but also other—persons, particularly persons with disabilities, can make

use of help services in specific circumstances, especially in the event of long-term
care dependency (auxiliaires de vie). This service is not based on any legal
regulation but on a ministerial circular.47 The service providers assist with the
activities of daily living and, at the same time, offer moral and psychological
support. The French Ministry of Social Affairs and Health makes a financial
contribution. Further help services in different forms and with various objectives
are offered. This includes services such as meals on wheels, provision of meals in
community centres/municipal facilities ( foyers-restaurants), on-call services
(phone alert), assistance with administrative matters and other small errands (ser-
vices d’accompagnement), help with repairs and breakdown services (however not
in competition with professional providers of such services).
45
Law 79-1140 of 29 December 1979.
46
Circular CNAMTS No. 207 of 29 October 1974.
47
Circular No. 81-15 of 29 June 1989, Bulletin Officiel des affaires sociales (BOAS) n 81/28,
11.8.1981.
112 O. Kaufmann
5.6 Semi-Inpatient Assistance
Semi-inpatient assistance services or, respectively, establishments are especially

allowed for in terms of he´bergements temporaires. The main characteristic is the
time limit for accommodation. Thus, he´bergement temporaire is to be understood
both as the continuous accommodation during a specified time or, respectively, for
a specified period in the course of a year, and as a very short stay in an establish-
ment that may not even exceed a few hours (hôpital de jour, centre de jour, centre
d’accueil a la journeé). It should also and especially during the holiday season be
possible to accommodate elderly persons in such establishments in order to allow
their caregiving relatives some “time out”. These temporary forms of accommoda-
tion are generally seen as essential help solutions enabling elderly persons to
continue living in their own homes. In the event that permanent accommodation
in a care home should become necessary at a later stage, the semi-inpatient services
rendered previously may prevent the shock, or at least relieve the symptoms, of the
sudden change to an entirely new and dependent life.48 Another option regarding
semi-inpatient accommodation may be remunerated accommodation in the home of
a private person.
6 Organisation and Financing

6.1 Organisation
The National Solidarity Fund for Autonomy (Caisse Nationale de Solidarite´ pour
l’Autonomie, CNSA), i.e. the French national care fund, which was established in
2005 organises the system of long-term care services and to a large extent regulates
its funding.49 It finances the assistance services for elderly persons dependent on
long-term care or with disabilities; it ensures equal treatment methods regardless of
geographical or material differences; it provides information, expert opinions and
support, thus promoting quality assurance.
The system is financed by various contributions that are to be paid into the care
fund:
– a contribution amounting to 0.3% paid by the public and private employers in the
form of a solidarity contribution (contribution de solidarite´);
– a contribution amounting to 0.3% on social security contributions, payable on
assets;
– a contribution amounting to 0.3% payable on income from assets and
investments;
48
See also Dauchez (1988), p. 51.
49
Art. L. 14-10-1 CASF.
– a contribution amounting to 0.1% payable on general social contribution (CSG)

and on social security contributions on games of chance;
– a contribution from the statutory old-age security systems
– a contribution from the health insurance systems.
6.2 Financing of the APA Benefit/Service
The National Solidarity Fund for Autonomy (caisse nationale de solidarite´ pour
l’autonomie, CNSA) is responsible for financing APA services.50
This is effected by way of various contributions that are to be paid into the care fund:
– a contribution amounting to 0.3% paid by the public and private employers in the
form of a solidarity contribution (contribution de solidarite´);
– a contribution amounting to 0.3% on social security contributions, payable on
assets;
– a contribution amounting to 0.3% payable on income from assets and
investments;
– a contribution amounting to 0.1% payable on general social contribution (CSG)
and on social security contributions on games of chance;
– a contribution from the statutory old-age security systems
– a contribution from the health insurance systems.
It is important to state, however, that the health fund covers the major share of
the treatment—i.e. medical—costs (soins).
6.3 Remuneration of Benefits and Services
With a view to remuneration, a distinction is made between accommodation

services, care services and medical services; remuneration in each case depends
on the respectively fixed compensation rate.
The extent to which costs are covered depends on the type of service granted (see
Table 1).
6.3.1 Accommodation Costs
The costs for being accommodated in a facility are borne by the residents or their
relatives. If the requirements are fulfilled, a housing subsidy may be granted
(AOL/ALS). Payment of the costs entitles to all kinds of services such as
50
Law No. 2004-626 of 30 June 2004, OJ 1 July; Art. L 1410-1, I CASF, Law No. 2005-102 of
11 February 2005.
114 O. Kaufmann
Table 1 Allocation of costs according to service provider and category in %

Personnel, professional Accommodation Long-term Medical services
group in facility care services provided by physicians
Administration 100 0 0
Catering, provisioning, 100 0 0
general services
Social services, 100 0 0
entertainment
Nursing level (ASH) 70 30 0
Preventive medical care 0 30 70
(AS/AMP)
Psychologist 0 100 0
Nursing 0 0 100
Medical care 0 0 100
Physician 0 0 100
Pharmacy 0 0 100
accommodation, full board, laundry services and maintenance. 5.5% VAT have to
be paid if the facility is profit-oriented or if it is subject to VAT. For accommoda-
tion in facilities recognised by the Social Assistance Office, the costs may be borne
by the latter depending on the beneficiary’s income. If this is case, the department
retains 90% of the resident’s income and may also be given recourse to his/her
personal assets. Moreover, family members liable for maintenance may, if appli-
cable, also be asked for co-payments.
6.3.2 Long-Term Care Costs
The costs for long-term care vary and primarily depend on the amount of long-term
care to be provided, i.e. on the individual care level in which the person has been
classified by a physician on the basis of the AGGIR evaluation table (see above).
The tariffs of the long-term care levels are calculated for each of the facilities on the
basis of a tripartite agreement concluded between the State, the department and the
care facility to finance the accommodation of the facility’s residents (see above).
The residents bear the costs, but can be granted an income-related APA benefit
financed by the department. This benefit is either paid to the resident or directly to
the facility. The APA benefit is always lower than the actual costs incurred, since
the person dependent on long-term care will always have to make co-payments
which are not income-related.51
51
6.3.3 Costs for Medical Services
The costs for medical services are borne by the health fund.
7 Statistical Data (Tables 2, 3, 4 and 5)
Monthly APA benefit according to care level (Dec. 2009)52

By the end of 2009 1,148,000 persons were granted an APA service (APA ¼ allo-
cation personnaliseé d’autonomie), with 699,000 of them living at home and
449,000 being accommodated in institutions.53
No co-payments are required from persons in need of long-term care whose
income does not exceed EUR 689.50 (2010). If their income is higher, co-payments
are graduated up to 90%.
Table 2 APA beneficiaries according to the different care levels (GIR) as per 31 March 2009a
(in thousands)
Total At home In institutions/facilities
Care Number of Number of Number of
level beneficiaries % beneficiaries % beneficiaries %
GIR 1 17 2.5 88 15.8 85 7.7
GIR 2 123 18.1 190 44.2 313 28.2
GIR 3 148 21.7 88 15.8 218 19.4
GIR 4 393 57.7 104 24.2 497 44.7
Total 681 100 430 100 1111 100
Source: DREES, enquête trimestrielle auprès des conseils généraux
a
Etudes et résultats n 780. L’évolution de l’allocation personnalisée d’autonomie (APA) de 2002 a
2009, 2011, 4
Table 3 Amount granted for care provided at home

Care Amount paid for a Contribution of the Co-payment Beneficiaries with Amount of
level care programme General Council by beneficiary co-payments in % co-payment
1 1013 833 180 72 249
2 790 636 154 76 202
3 585 477 108 76 142
4 356 293 63 78 81
Total 500 408 92 75 120
52
Etudes et résultats n 780, October 2011, 4.
53
Etudes et résultats 780, 2011, 2f.
116 O. Kaufmann
Table 4 Amount granted for accommodation in a (care) home for the elderly (EHPA)
Level Average amount Contribution of the General Council Co-payment by beneficiary
1 and 2 563 400 163
3 and 4 352 200 152
Total 478 320 159
Table 5 Benefit maximum GIR 1 1235.65

per GIRa
GIR 2 1059.13
GIR 3 794.35
GIR 4 529.56
a
As per 1 April 2010. It should be noted that the amount of
benefits has increased, nowadays 2017 the benefit amount for
GIR1 is about 1714 Euro
8 Monitoring of Benefits and Services
The possibility to exercise control applies with respect to all areas. On the one hand,
the control function extends to the provision of benefits (type of benefit, extent, etc.)
and in this respect it is somewhat similar to legal protection. On the other hand, it
also extends to the various institutions engaged in service provision. In many cases
control is also, but not exclusively, ensured by the funding agencies themselves, as,
for example, by the territorial entities. For instance, if a cash benefit is provided,
control is exercised at department level by the relevant social security administra-
tion of the “action sociale”. In case of dispute an appeal can be made to the
competent court or the administrative commission of the department (aide sociale)
also with respect to the exercising of control. The administrative law judge is
especially competent if the decrees regarding the various facilities of accommoda-
tion are subjected to review. These decrees in particular regulate admittance,
closure, surveillance of standards, and the accommodation of social benefits recip-
ients. In many cases the monitoring may be multidimensional, as with the facilities
of accommodation, for example.
The social and socio-medical institutions are subjected to food hygiene checks,
labour inspection (inspection du travail), and examinations by the social security
institutions and by the fire safety department. The major supervisory authorities are
the president of the General Council and the prefect who both act within the scope
of their respective responsibilities. The legal bases regarding the exercise of control
are manifold. The main legal basis is, however, the Social Act of 1975. It stipulates
a sanction in the form of a partial or complete, provisory or definite closure of the
respective institution if the various provisions have not been observed. This applies
in particular if the standards have not been met despite the cross-checking of
another public administration, if occurrences have been observed in the institution
that give rise to the imposing of sanctions on the facility’s management, or if the
health, security or well-being of the residents is at risk due to structural,
organisational or administrative reasons. These sanctions may be imposed on all

institutions and kinds of assistance if the specific rules have not been complied with.
Generally it must be noted that consumer protection rules apply to both pricing
and the submission of contract offers etc., and thus contribute to the establishment of
a general control mechanism. This is true for certain formalities (such as the drafting
of contracts in written form), and also on the merits (for instance with respect to the
observance of fixed daily rates or all-inclusive rates, or of the provisions concerning
a price increase after the conclusion of a contract that is permissible and not bound
by price regulations). The relevant provisions on the protection of older consumers
(abus de faiblesse) are of particular interest in this respect, too.
9 Long-Term Care Insurance as an Independent Insurance

Branch?
Until recently, the prospects were dim as to establishing an independent social

insurance branch of “long-term care”, a fact which was already considered as such
in 2005.54
9.1 Stages Leading to an Independent Social Security

Branch and the Main Obstacles Regarding
the Establishment of an Independent Insurance Branch
The acknowledgment of long-term care dependency as an independent social risk

with the consequence of the latter being assigned to its own insurance branch has
met with obstacles. Of course, also in France there is a growing awareness of the
paramount importance of protection in the event of long-term care dependency.
Thus it is not surprising that the introduction of a social insurance branch on “long-
term care” has been a topical debate for years and is still unabated—and it is likely
to become a reality one day.
9.2 Protection Against the Risk of Long-Term Care

Dependency Via Private Insurance?
Several possibilities come to mind for establishing protection against the risk of
long-term care dependency via private insurance. However, the introduction of an
54
Frinault (2005), p. 612.
118 O. Kaufmann
obligatory long-term care insurance in the form of a general private insurance made
mandatory for all is no longer envisaged.
One conceivable option might be a form of private insurance that is exclusively
concluded for the aforementioned purpose. Another option might be to use already
concluded forms of private insurance as protection against this risk. Life insurance
would seem the most suitable form of insurance for this purpose.55
9.3 A Law for Maintaining One’s Personal Autonomy?
On 3 June 2014, a bill was submitted concerning the necessary adjustments of

society to the general ageing process.56 In June 2015, a future law was announced
with a view to the preservation of autonomy on the part of elderly persons
dependent on long-term care.57
The final law concerning the adjustments of society to the general ageing process
was passed in December 2015.58 This law aims at guaranteeing the solidary
financing of preventive measures and of assistance services to persons who have
lost, or are at risk of losing, their autonomy and independence. For this purpose, an
additional solidarity contribution to support autonomy will be introduced (Contri-
bution additionnelle de solidarité pour l’autonomie, CASA). The funds thus gen-
erated shall enable persons dependent on assistance to apply the personalised
autonomy benefit (allocation personnalisée d’autonomie, APA, see above, p. 7) in
their own homes, and shall also improve intervention measures with a view to
assisting caregivers. Ultimately, this is to make sure that assisting persons on their
part have sufficient rest time; further, it aims at creating better options as regards
intervention measures in the context of prevention. The law is scheduled to enter
into force and to become applicable in 2016; for this purpose, several implemen-
tation regulations (ordinances, decrees, enactments and, if applicable, circulars) are
yet to be devised.
55
Gaulon (2011). It is a fundamental distinction which should, however, not make a big difference
since in most cases long-term care dependency becomes a relevant topic only later in life.
56
Projet de loi relatif a l’adaptation de la société au vieillissement, (law project concerning the
aging of people). The correspondent for this project, Martine Pinville, submitted Report No. 2155
in July 2014.
57
AEF Dépêche n 5014194. June 2015.
58
Law No. 2015-1776 of 28 December 2015 concerning the adjustments of society to the general
ageing process (l’adaptation de la société au vieillissement).
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(ed) Soziale Sicherung bei Pflegebedürftigkeit in der Europäischen Union. Nomos
Kessler F (dir) (1992) La dépendance des personnes âgées. Revue de droit sanitaire et social,
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ou rendez-vous manqué?, Politiques et management public, Numéro spécial “Politiques
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française, Paris
Rapport Laroque (1962) sur la politique de vieillesse
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Documentation française, Paris
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dépendance. Thèse Université Robert Schuman Strasbourg III, 18 December 2004
Vasselle A (2011) Rapport d’information, fait au nom de la mission commune d’information sur la
prise en charge de la dépendance et la création du cinquième risque, Sénat
Long-Term Care in Germany
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
2 Long-Term Care and SGB XI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
2.1 General Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
2.1.1 Social Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
2.1.2 Competences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 128
2.1.3 Objective of Long-Term Care Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 128
2.1.4 Gender and Cultural Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
2.1.5 Self-Determination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
2.1.6 Primacy of Care at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
2.1.7 Type and Extent of Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
2.1.8 Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
2.1.9 Self-Responsibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
2.1.10 Information and Advice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
2.1.11 Obligations of Stakeholders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133
2.2 Personal Scope of Application . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
2.2.1 Public System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
2.2.2 Mandatory Private Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 136
2.3 Formal Requirements for Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
2.3.1 Application . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
2.3.2 Waiting Period . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
2.3.3 Time Limits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
2.3.4 Exclusion from Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
2.3.5 No Benefits Abroad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
2.3.6 Benefits in Kind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
2.3.7 Expiry of Entitlement to Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
2.4 Concept of Long-Term Care Dependency (Begriff der Pflegebed€ urftigkeit) . . . . . . 139
2.4.1 Former Concept (Until End of 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140
2.4.2 New Concept (As from 1 January 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141
2.5 Levels of Long-Term Care Dependency (Stufen der Pflegebed€ urftigkeit) . . . . . . . . 142
2.5.1 Former Classification (Until End of 2016) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142
2.5.2 New Classification (As from 1 January 2017) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143
2.6 Assessment Procedure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 144
H.-J. Reinhard (*)

Fulda University of Applied Sciences, Fulda, Germany
e-mail: hans-joachim.reinhard@sk.hs-fulda.de

https://doi.org/10.1007/978-3-319-70081-6_5
122 H.-J. Reinhard
2.6.1 Public System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 144

2.6.2 Mandatory Private System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145
2.7 Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
2.7.1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
2.7.2 General Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
2.7.3 Benefits for Care at Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146
2.7.4 Semi-Inpatient Care (Teilstationäre Pflege) and Short-Term Care
(Kurzzeitpflege) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
2.7.5 Full Inpatient Care (Vollstationäre Pflege) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
2.7.6 Benefits for Family Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150
2.7.7 Benefits for Insurees with a Substantial General Need for Care . . . . . . . . . . . 151
2.8 Promotion of New Forms of Living Together . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
2.9 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
2.10 Relationship Between Long-Term Care Insurers and Benefit Providers . . . . . . . . . . 153
2.10.1 General Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153
2.10.2 Relationship to Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153
2.10.3 Relationship to Other Benefit Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155
2.11 Payment for Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 156
2.11.1 General Rules . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 156
2.11.2 Payment for Inpatient Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157
2.11.3 Payment for Outpatient Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157
2.12 Integrated Care (Integrierte Versorgung) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158
2.13 Care Support Centres (Pflegest€ utzpunkte) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158
2.14 Quality Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158
2.15 State Subsidies for Private Long-Term Care Provision . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
2.16 Long-Term Care Provision Fund . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
3 Long-Term Care As a Social Assistance Benefit (Hilfe zur Pflege) . . . . . . . . . . . . . . . . . . . . . . 159
4 Long-Term Care Benefits Under Other Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 162
4.1 Federal Relief Act (Bundesversorgungsgesetz, BVG) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 162
4.2 Workers’ Compensation Act (Arbeitsunfallversicherung) . . . . . . . . . . . . . . . . . . . . . . . . . . . 164
5 Rights of Family Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164
5.1 Labour Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
5.2 Social Security . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168
5.2.1 Pension Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168
5.2.2 Health Insurance and Long-Term Care Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . 169
5.2.3 Work Accident Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
5.2.4 Unemployment Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
5.3 Civil Law (Inheritance Law) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
6 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 172
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173
1 Overview
Like other industrialized countries Germany, too, is facing a dramatic demographic

change. Life expectancy has increased by more than 15 years since World War II
and in particular the number of very old people has rocketed. While in the 1970s, a
85th anniversary was still a major event, today’s newspapers very often show
photos of centenarians being delivered congratulatory messages marking their
100th birthday. According to the Federal Bureau of Statistics in 2014 some
Long-Term Care in Germany 123
690,000 people were older than 90 years1 and some 19,150 were 100 years and
older.2 Most of these jubilee festivities take place in residential homes since nearly
all people who have reached this age almost inevitably need some form of help. In
residential homes, where in 2014 some 764,431 persons lived, professional carers
for the elderly provide the necessary help.3 But a large number of elderly persons, in
particular those in their seventies, eighties and sometimes even nineties, still live in
their own homes or with their families. Families are, in fact, still the main providers
of long-term care in Germany. In 2014 7 out of 10 dependent persons (1,861,775
persons) received care at home.4 The “burden” of giving care mainly rests with the
daughters or daughters-in-law, but due to the rise in life expectancy of both men and
women, as well as the changing role of men and women in society it has also
become common that a husband cares for his dependent wife—even though this
solution is mostly resorted to if the couple has no children who might provide
the care.
The current demographic development reveals new problems to those family
members who actually deliver care services. Due to the rise in average life
expectancy5 to more than 80 years and the need for help in very old age the carers
themselves (children, partner) may be advanced in age and may need some kind of
personal support. In addition, quite often both their parents are still alive and both
may be in need for help. This doubles the burden that these family members have to
shoulder. On the other hand, however, there are ever fewer shoulders that can bear
this exorbitant burden. Since the 1960s, the number of children born into families
has been on a constant decrease. In 2014, only 11.5 million families had children.
This was a decrease of 13% compared to 1996. The majority (52.6%) had only one
child and another 35.8% two children. Some 9.2% had three children and only 2.4%
had four children or more.6 Many younger carers in the family do not have a brother
or sister with whom they can share the challenging task of caring for frail parents.
Moreover, over the last two decades, the demands of the labour market concerning
mobility and flexibility have increased and it is not always easy to combine work
and care duties. The problem has even worsened during the last decade. Before, a
number of advantageous legal provisions had offered workers in their late 1950s or
early 1960s the opportunity to draw an early retirement pension at reasonable
income replacement rates. Until shortly after the millennium year, many enterprises
urged their employees to apply for an early retirement pension and leave the labour
market. A lot of employees gladly made use of this option because it opened up a
good compromise of how to take care of their dependent family members without
the stress of having to arrange work and care duties. Recent policy has made a total
1
Statistisches Bundesamt (2016), p. 33.
2
3
4
Statistisches Bundesamt (2016), pp. 117, 126.
5
6
124 H.-J. Reinhard
U-turn with regard to pensionable age. While under the old concept the motto had
been “the earlier the retirement, the better for the enterprise (and the labour
market)”, the provisions for early retirement pensions have, since 2012, either
completely disappeared or are linked to a high deduction rate up to 14.4%7 that
the majority of employees cannot afford. Moreover, pensionable age will, within
the next years, see a constant rise up to age 67,8 and a further increase up to age 70 is
already under discussion. This makes it far more difficult to leave the labour market
earlier, e.g. in order to provide care to a dependent person next-of-kin, without
being punished with a low pension in old age.
From the present perspective, it was almost a stroke of luck that Germany was
one of the first countries to experience the demographic change. During this period,
the increase in the number of elderly people was relatively slow and constant and
allowed enough time to react. Then, at the beginning of the 1970s the need for long-
term care increased substantially, and it soon became clear that the costs for
professional care were not bearable by individuals. A growing number of persons
receiving professional care had to rely on the means-tested social assistance
system.9 This was, in a way, very humiliating as the applicants first had to use up
their entire income and savings before social assistance benefits were granted. At
that time, dependency on long-term care was a direct way into poverty. In 1978, a
private insurance company offered an insurance contract for the coverage of costs
for long-term care. Since it was a private insurance company the premiums were
calculated according to the applicant’s personal risk (age, state of health etc.) and
were not affordable for just anybody, not to speak of the fact that a private insurance
company can freely decide on whether to conclude an insurance contract or to
refuse it.
In 1981, the 48th Conference of Health Ministers of the German Federal States
discussed the building-up and financing of outpatient and inpatient care services.10
The Association of Private Health Insurers (PKV) drafted some sample terms and
business conditions for care insurance contracts. In 1984, the respective supervisory
authority officially approved these terms and business conditions, and in 1986
already 16 private insurance companies had contracts to cover the costs of long-
term care in their portfolios. At that time, the Federal Government was still strictly
against a law addressing long-term care.
In 1990, the federal state of Baden-Württemberg started an initiative to cover the
costs of long-term care. It introduced a legislative proposal11 in the Federal Council
(Bundesrat) that represents the federal states (Länder). One reason was the exten-
sive increase in costs for social assistance benefits to be granted in the case of long-
term care dependency. In 1991, some 543,000 persons in need for long-term care
7
§ 77 Para. 2 Nr. 2 SGB VI.
8
§§ 35, 235 SGB VI.
9
At that time named Bundessozialhilfegesetz (BSHG), now transferred into SGB XII.
10
48. Konferenz der Gesundheitsminister (1982), p. 22.
11
Bundesrat (1990).
received benefits amounting to 12.7 billion DM (6.5 billion €). This was more than
one third of the total expenditures for social assistance.12 Four years later, in April
1994, the Bundestag (German Parliament) and the Bundesrat (Federal Council)
adopted a law on long-term care which came into force on 1st January 1995.13
The promulgation of the law was preceded by a vivid and emotional political
debate. First, the method of financing had to be decided on. Many economists
favoured a capital-based system. The conservative-liberal federal government
preferred a pay-as-you-go scheme. Secondly, the scope of personal application
had to be defined. A restriction on benefits exclusively for the elderly would have
made the system cheaper and easier to handle, but in the end, the law made sure that
the entire population was comprised irrespective of the individual’s age. Thirdly,
the private insurance companies were integrated into the system. However, they
had to—still have to—offer premiums and benefits that equal those of the public
system. The most crucial point was the definition of the need for long-term care.
Three major amendments in 2002,14 in 201215 and 201516 were to improve and
extend the system. Another major amendment came into force in 2017.17 It elab-
orated a new definition of the need for long-term care which is related to the needy
person’s remaining capacities and not, as it was the case in the past, to the time that
is required to satisfy the dependent person’s needs. The reform was concluded by
another amendment18 that intensifies the role of the municipalities to support their
citizens with advice. More important is that the new concept of long-term care was
transferred to social assistance benefits.
SGB XI is not the only relevant law dealing with long-term care. It is preceded
by the Federal (War Victims) Relief Act (Bundesversorgungsgesetz, BVG).19
Originally, this act provided benefits in kind and cash benefits to the victims of
war and their survivors. Its scope of application was extended to other victims that
12
Birk (1994).
13
Das Elfte Buch Sozialgesetzbuch—Soziale Pflegeversicherung—(Artikel 1 des Gesetzes vom
26. Mai 1994, BGBl. I p. 1014, 1015), last amendment by Artikel 8 Absatz 4 des Gesetzes vom 21.
Dezember 2015 (BGBl. I, p. 2424).
14
Gesetz zur Ergänzung der Leistungen bei häuslicher Pflege von Pflegebedürftigen mit
erheblichem allgemeinen Betreuungsbedarf—Pflegeleistungs-Ergänzungsgesetz—PflEG vom
14. Dezember 2001, BGBl. I, p. 3728.
15
Gesetz zur Neuausrichtung der Pflegeversicherung (Pflege-Neuausrichtungs-Gesetz—PNG)
vom 23. Oktober 2012 BGBl. I, p. 2246.
16
Erstes Gesetz zur Stärkung der pflegerischen Versorgung und zur Änderung weiterer
Vorschriften (Erstes Pflegestärkungsgesetz—PSG I) of 17.12.2014, BGBl. 2014 I, p. 2222, see
also Federal Ministry of Health (2016)
17
Zweites Gesetz zur Stärkung der pflegerischen Versorgung und zur Änderung weiterer
Vorschriften (Zweites Pflegestärkungsgesetz—PSG II) of 21.12.2015, BGBl. 2015 I p. 2424;
Sassen (2017), pp. 38–41; Mätzke and Wiß (2016), pp. 126–144; Winkel and Nakielski (2017a).
18
Drittes Gesetz zur Stärkung der pflegerischen Versorgung und zur Änderung weiterer
Vorschriften (Drittes Pflegestärkungsgesetz—PSG III) of 23.12.2016, BGBl. I 3191; Frerk and
Leitner (2017), pp. 267–283; Erdmann (2017), pp. 34–37.
19
§ 35 BVG.
126 H.-J. Reinhard
suffered personal damage for which the state had a certain responsibility. Some
other acts refer to the BVG. The most significant cases are related to medical
complications caused by a prescribed vaccination20 and to physical or mental
problems due to having become a victim of crime.21 Soldiers may as well receive
benefits that equal those of the BVG.22 Also, in the case of a work accident, the
benefits according to SGB VII (Workers’ Compensation Act) prevail.23 Sometimes,
this is a problem because BVG and SGB VII use a different definition for the need
for long-term care than SGB XI.
The old age pension system according to SGB VI is competent to grant invalidity
benefits in cash. However, an invalid person does not necessarily need long-term
care, and a person in need for care is not always entitled to invalidity benefits (e.g. if
he/she does not fulfil the waiting period or is capable of executing any kind of work
for at least 3 h daily). A certain relationship exists between SGB XI and SGB IX
(Law on Rehabilitation and Participation of Disabled Persons).24 SGB IX mainly
aims at the integration of disabled persons into the labour market (e.g. adapt the
workplace to special needs) and to support disabled persons to participate in social
life (e.g. by driving them to a cinema in terms of a leisure activity). A much closer
relationship exists with SGB V, which regulates the provision of medical treatment.
When discussing the draft of SGB XI in the 1990s there was one possible option
how to fully integrate long-term care into the health system. In a way, this would
have been the logical consequence, since before the coming into force of SGB XI
persons requiring long-term care were often kept in hospitals even once the
possibilities of medical treatment were exhausted and the person only needed
personal care. One argument to separate health care and long-term care was
based on the high expenditure for hospital beds and clinical staff, which did not
make sense for persons who mainly needed food, drink and personal hygiene.
Yet, there is still a strong administrative link between the health care system and
the long-term care system. The health care insurer (Krankenversicherung) is,
by virtue of the law,25 automatically the person’s insurer for long-term care
(Pflegeversicherung), albeit funds and staff come from separate institutions and
different laws apply.
The implementation of SGB XI was to make an end to, or at least substantially
reduce, the number of applications for social assistance in the case of long-term
care. This was one main objective since social assistance benefits are paid by the
20
Impfschadensgesetz [Vaccine Injury Act].
21
Gesetz über die Entschädigung von Opfern von Gewalttaten [Act concerning Compensation for
Crime Victims].
22
Soldatengesetz [Legal Status of Military Personnel Act].
23
§§ 13, 34 SGB VII.
24
Sozialgesetzbuch (SGB) Neuntes Buch (IX)—Rehabilitation und Teilhabe behinderter
Menschen—(Artikel 1 des Gesetzes v. 19.6.2001, BGBl. I, p. 1046) as revised by
Bundesteilhabegesetz (BTHG) vom 23.12.2016, BGBl. I, p. 3234; Becker (2015a).
25
§ 1 Para. 3 SGB XI.
municipalities, which in turn have to finance the benefits from local taxes. In this
context, some municipalities felt overstrained with the growing number of elderly
applicants. In the beginning, the new act actually reduced the number of social
assistance recipients, and the way into poverty was interrupted for a good deal of
persons who had become dependent. In recent years, the situation has changed
again. The main reason for this development is the fact that SGB XI had never been
conceived to cover all the costs incurred due to long-term care, but only part
thereof. Nevertheless, SGB XI benefits together with income in old age
(e.g. pensions) were, as a rule, sufficient to cover the costs. However, during the
two decades of its existence, the increase of SGB XI benefits did not by far match
the increase in costs, particularly not those incurred for residential care. Thus, the
gap between financial resources available in old age and costs incurred for long-
term care has widened. In addition, the income replacement rate of pensions has
dropped from more than 60% of the last net income to less than 50% and the
tendency is to reach 42% within some years. Less income at higher costs means that
the path to poverty is likely to reopen for more and more people who are in
desparate need for personal assistance and who, as a consequence, will have to
apply for social assistance benefits in terms of help for care (Hilfe zur Pflege).26
2 Long-Term Care and SGB XI
SGB XI is the central and by far most important set of regulations for granting
benefits in case of long-term care.27 In its 20 years of existence it has kept its main
structure. In the beginning, there was a certain tendency to shift responsibilities and
costs from other social security systems, namely the health care system, to long-
term care insurance and vice versa. As an example, the question arose whether an
elderly person with a broken leg was to be provided a wheel chair on grounds of
medical illness or on grounds of lack of long-term care. Jurisprudence has clarified
things in a lot of court cases and questions of legal competence have become less
frequent.
2.1 General Principles
2.1.1 Social Insurance
The public long-term care insurance (soziale Pflegeversicherung) forms part of the
German social security system. The public system covers all affiliates that are
members of the public health care system. All other persons have to contract
26
§§ 61ff. SGB XII.
27
See also Schulz (2010).
128 H.-J. Reinhard
mandatory private long-term care insurance (private Pflegeversicherung). Due to

this comprehensive obligation for everybody, long-term care insurance is some-
times categorized as “insurance for the whole population” (Volksversicherung), a
denomination that is not really correct since people are not automatically insured
when they reside in Germany but must explicitly apply for insurance, and some
smaller groups may even fall out of the insurance system.
2.1.2 Competences
Statutory public long-term care insurance is provided by the Pflegekassen (long-

term care insurance funds). The tasks of the Pflegekassen are administered by the
Krankenkassen (public statutory health funds),28 but the institutions’ funds are kept
apart and accounted for separately.
2.1.3 Objective of Long-Term Care Insurance
The objective of long-term care insurance is to provide help to dependent persons

who rely on solidarity in support due to the severity of their dependency.29 The
implementation of long-term care insurance should transfer and observe some
principles of the German constitution (Grundgesetz), in particular the respect of
human dignity,30 the right to life and physical integrity,31 and acknowledge Ger-
many as a social state (Sozialstaat).32 Meanwhile, doubts have arisen as to whether
these principles are always observed in practice, given the many grievances aired
about the poor treatment of dependent persons in residential care, often resulting
from a lack of adequate financial resources and insufficient state supervision.33
Several complaints of unconstitutionality to the Federal Constitutional Court have
been launched, but in January 2016 the complaint of a care home manager was
already rejected in a simple letter on grounds of inadmissibility without any further
explanatory statement,34 another complaint on the grounds that at present the
plaintiffs were not in need for care.35
28
§ 1 Para. 3 SGB XI, § 4 SGB V.
29
30
Art. 1 Para. 1 Sent. 1 GG.
31
Art. 2 Para. 2 Sent. 1GG.
32
Art. 20 Para. 1 GG.
33
Moritz (2013a); Moritz (2013b), pp. 25–26; Moritz (2014), pp. 3–8; Verfasser (2014a), pp. 1–3;
Winkel and Nakielski (2017a)
34
Verfasser (2017).
35
BVerfG (Federal Constitutional Court) 1 BvR 2980/14—v. 11. January 2016.
2.1.4 Gender and Cultural Aspects
Long-term care insurance shall, as far as possible, take into account gender-specific
aspects and the differences between men and women, as well as individual needs
for care arising from cultural background.36 This mandate is becoming increasingly
important. In 1961, Germany had concluded an agreement with Turkey on the
provision of workers. Now, the first generation of the so-called “guest workers” is
getting old and many residential homes are not prepared to host Muslims with
specific needs for food and prayer.37
2.1.5 Self-Determination
Long-term care insurance benefits are intended to support dependent persons to

lead their lives as independently and autonomously as possible despite their need
for help. The support provided is to aim at the recovery and preservation of the
physical, intellectual and mental capabilities of the dependent person.38 Given the
overall shortage of staff in residential homes, the recovery of the dependent
person’s capabilities is more a desire than a reality.
The beneficiaries may choose among the facilities and services of different
institutions. Legitimate personal preferences are to be taken into account as long
they are within the legal provision. If requested by the dependent person, the carer
should be of the same sex, if possible.39 Religious attitudes are to be respected. If so
desired, dependent persons shall be provided long-term care in a facility where
clerical staff of their respective religion is available.40 This might cause problems
for Muslims since up to now there are only very few institutions with special areas
for believers in this faith. The applicants have to be informed about their rights.41
2.1.6 Primacy of Care at Home
The main focus of the German system is family care. The family is still seen as the
main provider of care. Benefits should primarily support care at home and promote
the willingness of relatives and neighbours to provide care so that the dependent
person can stay at home for as long as possible.42 Benefits for full inpatient care
36
§ 1 Para. 4a SGB XI.
37
Tezcan-Güntekin and Breckenkamp (2017), pp. 15–23.
38
39
40
41
42
§ 3 Sent. 1 SGB XI.
130 H.-J. Reinhard
should be avoided. Therefore, the prevailing benefits are those granted for semi-
inpatient care and short-term care.43
2.1.7 Type and Extent of Benefits
Benefits may be granted in the form of services or benefits in kind. Cash benefits are
paid for basic care and for housekeeping tasks, as well as for the reimbursement of
costs. In the case of semi-inpatient care or care provided at home by family
members, neighbours or volunteers, complementary long-term care benefits are
granted additionally. In the case of partial or full inpatient care, the respective
benefits granted shall serve to reduce the dependent person’s costs for care services
(pflegebedingte Aufwendungen). This is why the beneficiaries themselves have to
bear the costs for housing and food. All benefits are to be granted efficiently and
economically and only to the extent that is necessary.44
2.1.8 Prevention
A main objective is to avoid or at least reduce the need for care by taking preventive
measures. Long-term care insurers shall cooperate with other social security pro-
viders and initiate preventive measures in time in order to avert the need for care. In
2016, the long-term care insurers shall pay 0.30 € per member and year for
preventive measures in full inpatient facilities.45 This amount is indexed to the
increase of the monthly reference amount (monatliche Bezugsgr€ oße).46
2.1.9 Self-Responsibility
A more programmatic provision instructs the insured to prevent any need for long-
term care. They should exercise a healthy life-style; take preventive measures in
due time; if required, actively seek medical help and undergo treatment and medical
rehabilitation. However, there are no sanctions if an insured person neglects these
recommendations.
If already in need for care, persons dependent on assistance have to participate in
medical rehabilitation and activating care in order to overcome or reduce the need
for care, or to avert further aggravation of the situation.47 Since this is a legal
obligation, a sanction48 (reduced benefits) might be possible in extreme cases.
43
§ 3 Sent. 2 SGB XI.
44
§ 4 SGB XI.
45
§ 5 SGB XI.
46
§ 18 SGB IV.
47
§ 6 SGB XI.
48
§ 66 SGB I.
2.1.10 Information and Advice
2.1.10.1 General Obligations
The long-term care insurers are to support the self-responsibility of the insured by
providing information and advice on a healthy lifestyle that may ward off the
contingency of long-term care. They are to encourage participation of the former
in health-promoting measures.
The long-term care insurers have to provide, in an understandable manner,
information and advice to the insured and their relatives on all questions concerning
long-term care, in particular on benefits, benefits from other institutions and the
right to receive their personal assessment report. With the consent of the insured
person, doctors, hospitals, rehabilitation facilities or social security institutions may
inform the long-term care insurer immediately if the need for long-term care is
foreseeable or has already been attested.
In order to support the dependent person’s right of choice,49 to promote compe-
tition and to give an overview of existing means and facilities to cater for the
person’s needs, the long-term care insurer must—immediately after receiving the
application for benefits—transmit a comparative list on the benefits and costs of
care facilities within the beneficiary’s surroundings (Leistungs- und
Preisvergleichsliste).50 At the same time, it has to inform the dependent person
about the nearest care support centre (Pflegest€ utzpunkt)51 and about the possibility
to get advice on long-term care matters (Pflegeberatung).52 It has to tell the
dependent person that advice and support in a care support centre and general
advice on long-term care matters is free of charge. At the same time, it has to offer
advice regarding the question as to what kind of benefits might be adequate in the
dependent person’s individual situation. In addition, the dependent person is to be
informed on the results of quality assessments. Insured persons with a significant
general need for care are to be informed on low-threshold offers for care services
and aid resources to help relieve the burden on family members.53
2.1.10.2 Provision of Advice on Long-Term Care (Pflegeberatung)
Since 1 January 2009 all beneficiaries are entitled to receive individual advice
and support by a care advisor (Pflegeberater/in) on the options and procedures of
how to claim social benefits and other means that shall support persons with a need
49
50
This list has to be updated and provided by the Association of Long-Term Care Insurers at state
level (Landesverband der Pflegekassen), § 7 Para. 3 Sent. 3 SGB XI.
51
§ 92c SGB XI, see below Sect. 2.14.
52
§ 7a SGB XI.
53
132 H.-J. Reinhard
for care (Pflegeberatung).54 Advice provided on long-term care is, in particular,

intended to:
1. evaluate and analyse systematically the need for help, taking into account the
assessment report,
2. stipulate an individual plan for care provision (Versorgungsplan) with details on
the necessary social benefits and help services concerning the promotion of
health, prevention of diseases, cure, rehabilitation or other medical, care-related
and social help,
3. enforce the necessary measures to realize the individual plan for care provision
inclusive of approval thereof by the competent institution that provides the
benefits,
4. supervise the enforcement of the individual plan for care provision and adapt to
changing needs, if necessary,
5. evaluate and document, in extremely complex cases, the procedure for
granting help.
The individual plan for care provision comprises, in particular, recommenda-
tions for the necessary measures in the case to be decided on, information on local
facilities and evaluation and adaption of the recommended measures. The individ-
ual plan for care provision aims at gaining the consent of the dependent persons and
all care-providing persons or institutions involved. There should be a close coop-
eration with other institutions, namely with the joint service centres (gemeinsame
Servicestellen) for the disabled.55
If so desired, advice on long-term care may also be provided to other persons, in
particular the next of kin and partners, and this may take place in the household or the
facility where the dependent person is living. The application for benefits may be
given to the care advisor, who has to forward it immediately to the long-term care
institution. The insurer’s decision to grant benefits is also forwarded immediately to
the applicant and the care advisor. The number of care advisors56 must be sufficient
to provide comprehensive advice in a timely manner. The long-term care insurer
employs qualified staff, namely professional caregivers, social security administra-
tors or social workers with the relevant additional qualification as required.
All long-term care insurers57 are obliged to cooperate with each other in the care
service centres to ensure efficient provision of advice. Private long-term care
insurers may make use of staff from public insurers if they conclude an agreement
with the latter, but they may also make agreements with other private insurers in
order to fulfil the obligations mentioned above. Of course, care advisors are
responsible for protecting all social data they collect from the dependent person.
54
§ 7a SGB XI.
55
§ 23 SGB IX.
56
The Federal Association of Long-term Care Insurers (Spitzenverband Bund der Pflegekassen)
had to elaborate recommendations on the requested number and qualifications of care advisors.
57
In 2017, 113 public long-term care insurers exist all over Germany.
2.1.10.3 Vouchers for Advice Services (Beratungsgutscheine)
Immediately after receiving an application for long-term care benefits the long-term
care insurer has either to offer a precise date within 2 weeks’ time as an appoint-
ment for the provision of advice, or to issue a voucher for advice services that is
valid in the aforementioned service centres. The long-term care insurer is liable for
making sure that these service centres meet the qualifications mentioned above. For
that reason, the long-term care insurer alone—or together with other long-term care
insurers—concludes contractual agreements with independent and neutral service
centres on:
1. requirements for the provision of advice and with regard to the qualification of
the advisor,
2. compensation, if the insurer has incurred damages due to wrong advice
given and.
3. payments.
These provisions apply to private long-term care insurers accordingly.
2.1.11 Obligations of Stakeholders
2.1.11.1 Long-Term Care As a Duty of Society As a Whole
The intention of the law is to provide long-term care to the population in terms of a
task to be borne by society as a whole.58 The federal states (L€
ander), municipalities
(Kommunen), long-term care facilities and long-term care insurers closely cooper-
ate with the Medical Service of the Health Funds (Medizinischer Dienst) to
guarantee that outpatient and inpatient long-term care is efficient, offered on a
regional basis, close to the needy person’s residence and well-coordinated among
the providers. The stakeholders extend and develop the necessary infrastructure for
long-term care. In particular, they should complement care at home and inpatient
care by new forms of semi-inpatient care and short-term care; they should also offer
benefits for medical rehabilitation in addition to care services. The formulation of
the law is very emotive in that it states that the stakeholders should support and
promote the willingness among professional and volunteering carers, next of kin,
neighbours and self-help groups to provide humane care and work towards a new
culture of help and affection among human beings.
Every year, the Federal Association of Long-term Care Insurers may pay
5 million Euros for projects serving as models, studies, scientific expertise and
expert meetings to develop new quality-assessed forms of long-term care. Primar-
ily, the task is to implement and evaluate personal budgets and new forms of living
in a selected region.59
58
59
134 H.-J. Reinhard
2.1.11.2 Tasks of the German Federal States (Länder)
ander) are responsible for building up an efficient, sufficient and

The states (L€
economic infrastructure for long-term care.60 State law decides on whether and
how to support dependent persons. Depending on the financial means of the person
in need they must.
1. either bear the necessary investment costs for running the care facility
(betriebsnotwendige Investitionsaufwendungen) as shown on the provider’s
invoice or
2. directly help the care provider to bear the necessary investment costs for running
the care facility. For this financial support the states shall take into account the
financial savings accrued in the social assistance system after the implementa-
tion of the long-term care system.
2.1.11.3 Obligation to Report
Beginning with 2016, every 4 years the Federal Government will have to report to
the legislative bodies on the development of long-term care and the status of the
care infrastructure in the Federal Republic of Germany.61
2.1.11.4 Rights and Obligations of the Institutions Providing Long-Term

Care (Pflegeeinrichtungen)
The respective institutions and facilities have to provide care to dependent persons
according to the generally recognized state of knowledge concerning medical and
long-term care. Content and organisation of the benefits are to guarantee the
provision of humane and activating care respecting the dignity of the human
being involved.62
The manifoldness of institutional entities providing care is to be kept in mind
and their ownership, principles and independency are to be respected. It has to be
taken into account that it is the objective of church-related entities and charity
ager der freien Wohlfahrtspflege) to provide care to sick, frail and
institutions (Tr€
dependent persons, to comfort them and to accompany them during their end-of life
phase. Non-profit institutions ( freigemeinn€ utzige Tr€
ager) and private institutions
are still more common than publicly funded institutions.
60
§ 9 SGB XI.
61
§ 10 SGB XI.
62
§ 11 SGB XI.
2.1.11.5 Duties of the Long-Term Care Insurer (Pflegekassen)
The long-term care insurer is responsible for securing the long-term care of its
insured and has to cooperate intensively with other providers with regard to medical
care, long-term care and social care, in particular with local long-term care support
utzpunkte).63 The insurer shall support a network of regional and
centres (Pflegest€
municipality-based infrastructure for long-term care in order to enable care provi-
sion close to the dependent person’s residence.64 It shall cooperate with outpatient
and inpatient institutions in order to coordinate hand-in-hand, smooth and trouble-
free help services for the dependent person. It is to secure assistance, in particular,
via long-term care advice on basic care (Grundpflege), nursing care
(Behandlungspflege), medical treatment (medizinische Versorgung), specialized
palliative treatment (spezialisierte Palliativversorgung), prevention (Leistungen
zur Pr€avention), medical rehabilitation (medizinische Rehabilitation) and partici-
pation in social life (Teilhabe), as well as to provide support in the household
(hauswirtschaftliche Versorgung). The long-term care insurer also works towards a
cooperation of inpatient facilities with registered doctors to secure basic, special-
ized and dental medical treatment for the dependent persons.
2.1.11.6 Connection Between Long-Term Care Benefits and Other Social

Security Benefits
Benefits according to the Federal War Victims Relief Act (Bundesversorgungsgesetz),

workers’ compensation and public payments for accident compensation65 precede
SGB XI benefits. On the other hand, SGB XI benefits precede benefits from the
social assistance scheme. In general, SGB XI cash benefits are not taken into account
for the calculation of maintenance for relatives.66
2.2 Personal Scope of Application

2.2.1 Public System
As already mentioned, SGB XI is strongly linked to the health insurance system.

Members of the public statutory health care system are compulsorily affiliated to
the public statutory long-term care system.67 This also applies to persons who are
63
Schmidt (2017).
64
§ 12 SGB XI.
65
This applies to civil servants since they are not insured under the statutory
workers‘compensation scheme.
66
For details on this connection between the different schemes cf. below Chapters 3 and 4.
67
§ 20 Para. 1 Sent. 1 SGB XI.
136 H.-J. Reinhard
voluntarily insured under the statutory health care system.68 In a catalogue, the
law69 lists the groups that are mandatorily obliged to join the long-term care
insurance. The most important groups are: employees and persons in apprenticeship
schemes, beneficiaries of unemployment payments, farmers, independent artists or
publishers, disabled persons working in special institutions, students, trainees,
persons drawing a pension from the statutory pension system and other persons
who did not have a health care insurance before. Family members (children,
partners) with a low income70 are automatically included (Familienversicherung).71
Children are generally included up to age 18, up to age 23 if unemployed, and up to
age 25 if studying or taking part in a volunteer service, and for an unlimited amount
of time if the child had already been severely disabled as minor and continues to
stay without income.72
2.2.2 Mandatory Private Insurance
Persons who are not affiliated to the public statutory health insurance but to a
private health insurance have to conclude a private long-term insurance contract
either with their health care insurer73 or—within a period of 6 months—with
another private insurance company.74 The private insurance contract must promise
the same long-term care benefits as the statutory long-term care scheme.75 Pre-
miums may not exceed the contributions under the public statutory system and
children are automatically included.76 Private insurances are taken out by civil
servants who may not join the statutory health care system, self-employed persons,
members of the liberal professions (e.g. lawyers, physicians, dentists, veterinaries,
pharmacists etc.).
Since 1st January 2008 every person residing in Germany is obliged to have a
health care insurance contract77 if he/she is not already compulsorily insured under
the public statutory health care system. As a consequence of this legal obligation all
persons residing in Germany must have insurance for long-term benefits, too.
However this is not the reality. Many self-employed cannot afford the premiums
68
§ 20 Para. 3 SGB XI. They may leave the statutory long-term care insurance if they are insured in
terms of an adequate private insurance contract, § 22 SGB XI.
69
§ 20 Para. 1 Sent. 2 No. 1 SGB XI
70
2017: 425 € (East Germany: 380 €) or 450 € per month in case of marginal employment
according to § 8 Para. 1 No. 1, § 8a SGB IV.
71
72
73
74
75
76
Riedel (2002), pp. 5–6.
77
§ 193 Para. 3 Sent. 1 Versicherungsvertragsgesetz (VVG, Insurance Contract Act).
and refrain from contracting health insurance and long-term care insurance.
Although this is illegal procedure, there are estimates that more than 200,000
persons in Germany do not have any coverage at all.78 Even according to official
data in 2015 (latest available data) a total of 79,000 did not have any form of health
insurance, Experts fear that the number will drastically rise with the high number of
refugees coming into Germany who are not registered for social security benefits or
who might already have submerged into the black labour market.
2.3 Formal Requirements for Benefits
2.3.1 Application
A formal application for benefits is indispensable.79 Benefits are granted from the
date of application and are not paid retroactively even if there had been need for
long-term care in the past. If the application is made later than 1 month after the
beginning of dependency, benefits are paid with effect from the first day of the
month of application.80
2.3.2 Waiting Period
Entitlement to benefits requires a waiting period of at least 2 years within a period

of 10 years before application. This might prove an obstacle for persons who have
recently come to Germany. Affiliation to the public system is, under certain
conditions, possible for migrants and repatriates under the age of 65.81 Also persons
that have temporarily left the country might not have an entitlement to benefits. The
only way to avoid this disadvantage is to take out prospective entitlement insurance
before leaving the country. Persons whose compulsory insurance has ended may
apply for such a prospective entitlement policy within 3 months after termination of
their compulsory insurance. They must have been insured for 24 months within the
last 5 years before termination of the insurance or for 12 months proximate to
termination.82
78
79
§ 33 Para.1 Sent. 1 SGB XI.
80
81
§ 26a SGB XI.
82
§ 26 SGB XI.
138 H.-J. Reinhard
2.3.3 Time Limits
Benefits may be repeatedly granted for a limited time up to an overall maximum of

3 years.83
2.3.4 Exclusion from Benefits
There is no entitlement to benefits, if a person comes to Germany for the mere

purpose of getting insurance84 under § 20 Para. 1 Sent. 2 No. 12 SGB XI85 or as a
family member.86
2.3.5 No Benefits Abroad
Benefits are not transferred abroad.87 For limited stays outside Germany of up to a
maximum of 6 weeks per year cash benefits for care services (Pflegegeld)88 or
partial cash benefits (anteiliges Pflegegeld)89 continue to be paid. This limitation
was appealed against before the European Court of Justice,90 and the German law
had to be changed. Now, cash benefits and partial cash benefits are transferred
abroad without any time limit if the dependent person is living in an EU member
state, a state of the European Economic Area91 or Switzerland. This constitutes a
serious problem namely for Turkish nationals92 but also for persons from former
Yugoslavia who immigrated to Germany in the 1960s and 1970s and contributed to
the flourishing and prospering of the German economy. Now that they are old and
frail and might have the desire to return permanently to their country of origin, they
are not granted any benefits at all despite the fact that they have been legally obliged
to pay their contributions into the system for many years. Neither is a reimburse-
ment of contributions effected as, by contrast, is the case with contributions paid
into the pension system in cases where pensioners reside outside Germany on a
permanent basis.
83
§ 33 Para. 1 Sent. 3–5 SGB XI.
84
§ 33a SGB XI.
85
This applies only to persons who did not have a previous statutory health care insurance in their
country of origin and are not compulsorily insured in the German statutory health care system
(e.g. as an employee, student etc.).
86
§ 25 SGB XI.
87
88
§ 37 SGB XI.
89
§ 38 SGB XI.
90
ECJ C-160/96 (Molenaar) of 5.3.1998, cit. 24, 25, Coll. 1998, I-843.
91
Iceland, Norway, Liechtenstein.
92
BSG. Judgement 25.02.2015, Az. B 3 P 6/13 R.
2.3.6 Benefits in Kind
Benefits in kind (Pflegesachleistungen) are only granted abroad in cases where the
person that normally acts as a caregiver accompanies the dependent person during
his/her stay abroad. This was also challenged before the European Court of Justice
which ruled that a loss of benefits must be accepted if the beneficiary moves to
another member state (e.g. Austria).93 The reason is that under current European
coordination law94 long-term care is regarded as part of health care. Thus, the state
of residence is responsible according to its national rules. However, 1 year later the
ECJ modified its jurisprudence.95 In principle, the state of residence remains
competent to grant long-term care benefits. But the German system—where con-
tributions had been paid—has to complement the benefits if they are lower in the
state of residence. Unfortunately, the claimant died before the German Federal
Social Court could make a final decision. Rumor has it that some German long-term
care insurers are still very reluctant to pay for benefits in kind if to be provided
abroad. They insist that there is still no final decision and they cannot control how
severe the need for long-term care actually is if it has not been assessed according to
German law.
2.3.7 Expiry of Entitlement to Benefits
The entitlement to benefits expires if affiliation in the public system ends.96 When
changing from private long-term care insurance to the public scheme the elapsed
time is taken into account for the waiting period97 (and vice versa98).
2.4 Concept of Long-Term Care Dependency (Begriff der

Pflegebed€
urftigkeit)
Over the years it has shown that in everyday practice the concept of long-term care
dependency was not always feasible and had some disadvantages or loopholes.
Therefore, the legislator urged the Federal Association of Long-term Care Insurers
(Spitzenverband Bund der Pflegekassen), the Medical Service of the Health Funds
93
ECJ C-208/07 (Chamier- Glisczinski) of 16.7.2009.
94
Art. 34 Regulation (EU) No. 883/2004; in December 2016, the Commission proposed an
amendment to insert an own chapter on long-term care benefits.
95
ECJ C-338/09 (Jo~ao Filipe da Silva Martins v. Bank Betriebskrankenkasse–Pflegekasse) of
30.6.2011.
96
§ 35 SGB XI.
97
98
§ 110 Para. 1 No. 2 c SGB XI.
140 H.-J. Reinhard
(Medizinischer Dienst) and the National Association of Statutory Health Insurance

Funds (Spitzenverband Bund der Krankenkassen) to elaborate guidelines for the
assessment of long-term care dependency (Begutachtungsverfahren). The law
already prescribed the main principles of the new concept of long-term care
dependency, which focused on the dependent person’s remaining capabilities. It
stipulated five levels of long-term care dependency. This new concept came into
force at the beginning of 2017.99 For reasons of comparison, a brief description of
the former concept is given as well.
2.4.1 Former Concept (Until End of 2016)
The former concept of long-term care dependency based on the dependent person’s
illness (Krankheit) or disability (Behinderung). According to the legal definition100
a person was in need for long-term care if he/she require—due to physical, mental
or psychological illness or disability—permanent assistance (Hilfe), presumably for
at least 6 months and to a considerable or higher extent101 with the usual and
recurring activities (Verrichtungen) of daily life.
The law defined the types of illness and disability that were relevant:
1. Loss, paralysis or other dysfunctions of the postural and musculoskeletal system;
2. Dysfunction of inner organs or organs of perception;
3. Dysfunction of the central nervous system and dysfunctions in incentive, mem-
ory or orientation, as well as endogenous psychosis, neurosis or mental
disability.102
Help consisted in assistance, in partially or completely taking care of the
activities of daily life, or in supervision, or instruction aiming at an autonomous
execution of these activities of daily life.
A legal catalogue listed the usual and regularly recurring activities of daily life:
1. Body care: washing, taking a shower or bath, dental care, combing, shaving,
going to the toilet;
2. Feeding: preparing bite-sized food or assistance with eating;
3. Mobility: getting up and going to bed autonomously, dressing and undressing,
standing, walking, climbing stairs, or leaving the house and finding one’s way
home again;
99
Richter (2016).
100
§ 14 Para. 1 SGB XI (version 1994): Persons dependent on long-term care within the meaning
of this Book are defined as persons who, due to a physical or psychological illness or disability,
require continuous help to a significant or higher extent (§15) with the usual and recurring basic
activities of daily living for an estimated minimum period of 6 months.
101
§ 15 SGB XI (version 2007).
102
§ 14 Para. 2 SGB XI (version 1994).
4. Home care: shopping, cooking, cleaning the home, washing up, changing and
washing clothes, or heating the place.
2.4.2 New Concept (As from 1 January 2017)
The new concept103 is based on the remaining capabilities of the dependent person.
Persons become dependent on long-term care if they are, due to their bad state of
health, impaired in their autonomy or capabilities and therefore require the assis-
tance of another person. By definition, these persons are not able to autonomously
compensate or overcome their physical, cognitive or psychological impairments or
cope with their health-related impediments or requirements.104
The time factor has not been changed. By definition, long-term care dependency
implies that help is required on a permanent basis, presumably for at least 6 months
and with a degree of severity as defined by law.105
The relevant criteria were extended from three to six areas of health-related
impairments of autonomy or capability, which were elaborated in terms of profes-
sional care competences:
1. Mobility: changing of position in bed, keeping a stable position when sitting,
changing places, movements within the home, climbing stairs;
2. Cognitive and communicative capabilities: recognizing persons from the closer
environment, orientation in space and time, remembering significant events or
observations, steering of multi-step daily tasks, making decisions in daily life,
understanding circumstances and information, recognizing risks and dangers,
communicating elementary needs, understanding demands, participation in a
conversation;
3. Behavioural patterns and problematic psychological situations: peculiarities in
behaviour based on movement disorders, restlessness at night, self-injury and
auto-aggressive behaviour, damaging of objects, psychologically aggressive
behaviour towards other persons, verbal aggression, other care-relevant vocal
peculiarities, rejection of care and other forms of supporting assistance, para-
noia, anxiety, lack of incentive in a depressive mood, socially inadequate
behaviour, other care-relevant inadequate activities;
4. Self-support and personal hygiene: washing the upper front body, body care in
the head area, washing of the genital area, taking a shower or a bath including
103
Wilderotter (2015), Rasch (2015), Schroth (2015), pp. 60–65; Pick (2015), Igl (2015),
pp. 119–138; Rothgang and Kalwitzki (2015), pp. 46–54; Gabanyi (2016), Nakielski (2017),
pp. 13–14.
104
Art. 14 Para. 1 SGB XI (version 2017): “Persons dependent on long-term care within the
meaning of this Book are defined as persons who, due to health impediments, are limited in their
autonomy or capabilities and who therefore require assistance from others. The persons in question
cannot independently compensate or overcome their physical, cognitive or psychological impair-
ments or, respectively, cope with their health impediments and needs involved.”
105
§ 15 SGB XI (version 2017).
142 H.-J. Reinhard
hair wash, dressing and undressing the upper and lower body, preparing bite-
sized food and pouring drinks, eating, drinking, using a toilet or a toilet chair,
dealing with the consequences of aconuresis or urostomy and handling of a
permanent catheter, dealing with the consequences of anal incontinence and
handling of stoma, parenteral nourishment or tube feeding, severe food intake
problems in babies up to 18 months triggering an exceptional need for intensive
care;
5. Being able to deal with and autonomously handle health-related and therapy-
related tasks and burdens concerning medication, injections, inserting intrave-
nous access points, suction apparatus and oxygen disposal, application of
ointments as well as application of cold and heat, measurement and interpreta-
tion of body status, auxiliary means close to the body, concerning the changing
of bandages and wound-dressing, supply with stoma, regular one-time
catheterisation and use of digestive methods, therapy measures in the home
environment concerning time-intensive and hi-tech measures in the home envi-
ronment, doctors’ visits, visits in other medical or therapeutic facilities, time-
consuming visits in medical or therapeutic facilities, visits in facilities providing
early intervention and rehabilitation programs for children as well as concerning
the keeping of a diet or other health-related or therapy-related requirements for
behaviour;
6. Arrangement of daily life and social contacts: arrangement of the day-to-day
routine and adaptation to changes, resting and sleeping, spending time alone on
worthwhile occupations, planning for the future, interaction with persons in
direct contact, maintaining contact with persons outside the immediate
environment.
Impediments to a person’s autonomy or capabilities resulting in the fact that
independent household keeping is no longer possible are taken into account for the
criteria mentioned above.
2.5 Levels of Long-Term Care Dependency (Stufen der

Pflegebed€urftigkeit)
2.5.1 Former Classification (Until End of 2016)
The former classification consisted of three levels of long-term care dependency

and was very much based on time required for the various activities.
Level I (erheblich Pflegebed€ urftige—significant dependence on long-term care)
applied to persons who needed assistance at least once a day for no less than two
activities in the area of body care, feeding or mobility, and additional assistance at
various times during the week for keeping the household.
Level II (Schwerpflegebedürftige—severe dependence on long-term care)
applied to persons who needed assistance at least three times daily at several
hours with body care, feeding or mobility, and additional assistance various times
per week with keeping the household.
Level III (Schwerstpflegebedürftige—extremely intensive dependence on long-
term care) applied to persons who needed around-the-clock assistance with body
care, feeding or mobility, and additional assistance various times per week with
keeping the household.
What was relevant for the care of children was the respective additional care
time that was required as compared to the time required for assisting a healthy child.
The time per week that a family member or a non-professional carer needed for
the provision of the most necessary basic care and for keeping the household was
measured in terms of the daily average time spent in
Level I, i.e. at least 90 min, of which 45 min had to be allocated to basic care,
Level II, i.e. at least 3 h, of which 2 h had to be allocated to basic care,
Level III, i.e. at least 5 h, of which 4 h had to be allocated to basic care. When
assessing the relevant time frame, the time spent on specifically health-related
care is to be taken into account.
2.5.2 New Classification (As from 1 January 2017)
Under the new law, there are five levels of long-term care dependency, as compared
to a mere three levels under the former law.
Now, persons in need for long-term care are attributed a long-term care depen-
dency level (Pflegegrad) according to the severity of impediments to their auton-
omy or capabilities. The long-term care dependency level is assessed by virtue of an
assessment method (Begutachtungsinstrument) that is based on professional
expertise.
The assessment method is divided into six modules that correspond to the six
areas mentioned above.106 In each module, the criteria mentioned in the respective
area refer to the categories stipulated in Annex 1 of the law. The categories
represent the different degrees of severity with regard to impediments to a person’s
autonomy or capabilities. In reference to the specified criteria, individual points
based on professional expertise as shown in Annex 1 are linked to these categories.
In each module, the maximum number of points is achieved by summing up the
individual points that are subdivided in the respective point categories shown in
Annex 2 of the law. The overall number of points corresponds to the respective
degree of severity concerning impediment to a person’s autonomy or capabilities.
They are designated as follows:
106
§ 14 Para. 2 SGB XI (version 2017).
144 H.-J. Reinhard
Range of points 0: no impediments to a person’s autonomy or capabilities.

Range of points 1: minor impediments to a person’s autonomy or capabilities.
Range of points 2: significant impediments to a person’s autonomy or capabilities.
Range of points 3: severe impediments to a person’s autonomy or capabilities.
Range of points 4: extremely severe impediments to a person’s autonomy or
capabilities.
Weighted points as stipulated in Annex 2 are allocated to every range of points in
a module. They take into account the respective weight of the modules. The
modules of the assessment method are weighted as follows:
1. Mobility: 10%.
2. Cognitive and communicative capabilities, as well as behavioral patterns and
problematic psychological situations combined: 15%,
3. Self-support/personal hygiene: 40%,
4. Being able to deal with and autonomously address health-related and therapy-
related requirements and burdens: 20%,
5. Arrangement of daily life and social contacts: 15%.
The total number of points is decisive for the relevant grade for long-term care
benefits:
1. from 12.5 to 27 total points—grade 1: low impairments of autonomy or
capabilities,
2. from 27 to 47.5 total points—grade 2: considerable impairments of autonomy or
capabilities,
3. from 47.5 to 70 total points—grade 3: severe impairments of autonomy or
capabilities,
4. from 70 to 90 total points—grade 4: very severe impairments of autonomy or
capabilities,
5. from 90 to 100 total points—grade 5: very severe impairments of autonomy or
capabilities and special requirements for providing long-term care.
2.6 Assessment Procedure
2.6.1 Public System
The long-term care insurance mandates the Medical Service of the Health Funds
(Medizinischer Dienst der Krankenkassen—MDK) or independent experts to exam-
ine the insured person at home and to assess the level of dependency.107 The MDK
or the experts in charge have to assess possible measures to eliminate or reduce
107
§ 18 SGB XI; Hennecke (2017), pp. 29–31; Nakielski and Winkel (2017).
dependency or to prevent a worsening of the situation, including feasible, adequate

and reasonable measures of medical rehabilitation. They also have to give advice on
necessary changes in the domestic environment or explain preventive measures.
Has If the long-term care insurance does not resort to the MDK or cannot make an
assessment within 4 weeks after application, it has to nominate three independent
experts.108
The long-term care insurer has to decide on the application in written form
within a period of 5 weeks.
The decision has to be made within 1 week if the insured person is in a hospital
or in an institution for rehabilitation and if he or she is likely to need inpatient care
or if a next-of-kin has signalized to the employer that he or she will ask for care
leave or if the carer has already agreed on care leave with his or her employer.
In case of delay, the long-term care insurer has to pay 70 € per overdue week or
part of a week.109 This payment is not due if the long-term care insurance is not
responsible for the delay or if the insured person has already been assessed for
level I.
If the insured person applies for cash benefits, the MDK or the experts also have
to evaluate whether care at home can be secured in an adequate manner.110 The
assessment of dependent children should involve a pediatrician or a person spe-
cialized in child care.111
2.6.2 Mandatory Private System
After an application has been filed, the mandatory private insurance has to give the
insured person advice on long-term care within 2 weeks. The advice is given by
COMPASS Private Pflegeberatung GmbH.112 COMPASS is a private entity that
was founded by the Association of Private Health Insurers (Verband der Privaten
Krankenversicherung). The advice is not given in a care support centre
utzpunkt) but at home or in the institution where the applicant is currently
(Pflegest€
accommodated. The assessment is made by MEDICPROOF GmbH.113
MEDICPROOF is the equivalent of the MDK. It has to apply the same rules and
time frame for the assessment of dependency as the public system.
108
§ 18 Para. 3a Sent. 1 SGB XI.
109
§ 18 Para. 3b Sent. 1 SGB XI.
110
111
§ 18 Para. 7 Sent. 2 SGB XI; Miller (2017), pp. 6–14.
112
www.compass-pflegeberatung.de.
113
www.medicproof.de.
146 H.-J. Reinhard
2.7 Benefits
2.7.1 Overview
The law stipulates a catalogue of different benefits.114 This catalogue is final,

i.e. only benefits that are listed in it are granted.
2.7.2 General Principles
The delivery of benefits must be efficient and economically justifiable. It must not
exceed the necessary minimum level. Benefits may only be claimed from providers
that have concluded a contract with the long-term care insurance.115
Every 3 years, the Federal Government has to scrutinize the potential necessity
to adjust benefits and respective payments. The next review will be due in 2017.
The report to parliament should take into account the inflation rate of the preceding
3 years, but any benefit increase should not surpass the development of gross
salaries during the same period.116 This dynamic adjustment is very important
since in the past benefits remained the same for years. As a consequence, the gap
between costs and benefits widened dramatically.
Primacy is given to medical rehabilitation. Whenever possible, adequate reha-
bilitative measures should overcome or reduce the level of dependency or prevent a
worsening of the situation.117
2.7.3 Benefits for Care at Home
2.7.3.1 Benefits in Kind
Dependent persons may claim basic care (Grundpflege) and household care ser-
vices (hauswirtschaftliche Versorgung) as benefits in kind (h€ ausliche Pflegehilfe).
The beneficiary must not live in his or her own home but may not stay in an
inpatient institution. Benefits in kind are provided by carers that are employed by a
care provider. This care provider must have a contract with the long-term care
insurer. Private individuals may also qualify as caregivers if they have concluded a
contract with the long-term care insurance.118
Basic care and household care services comprise assistance for the activities
mentioned above in § 14 SGB XI. The monthly rates were, as from 1 January 2015:
114
§ 28 SGB XI.
115
§ 29 SGB XI.
116
§ 30 SGB XI.
117
§ 31 SGB XI.
118
§ 36 SGB XI, § 77 Para. 1 SGB XI; Winkel and Nakielski (2017c), pp. 21–23; Axmann (2017).
Level I: 468 €.
Level II: 1144 €.
Level III: 1612 €.
In special cases with an extremely extensive need for care, benefit payments
might have even add up to 1995 €. As an example, the law mentioned care for
patients in the terminal stages of cancer with regular multiple needs for care during
the night. However, this supplemented amount could not be granted to more than
3% of all beneficiaries in level 3.
Under the new law effective from 1 January 2017 the monthly benefit rates will
be as follows:
Level 2: 689 €
Level 3: 1298 €
Level 4: 1612 €
Level 5: 1995 €
Thus, the amount of level 5 will equal the old level III plus supplement.
2.7.3.2 Cash Benefits
Instead of benefits in kind, the beneficiary may also apply for cash benefits.119 It
must be ensured that the beneficiary receives assistance in an adequate manner and
to the necessary extent.
As of 1 January 2015, the following monthly benefit rates applied:
Level I: 244 €
Level II: 458 €
Level III: 728 €
From 1 January 2017, the following monthly benefit rates apply:
Level 2: 316 €
Level 3: 545 €
Level 4: 728 €
Level 5: 901 €
If the beneficiary is not entitled to a full month of benefits, payments are reduced
accordingly. A month is calculated in terms of 30 days. In case of a need arising for
short-term inpatient care120 and care at home in cases where a carer is not
119
§ 37 SGB XI; Winkel and Nakielski (2017b).
120
§ 42 SGB XI.
148 H.-J. Reinhard
available,121 half of the cash benefits are paid for up to 4 weeks per calendar year. In
case of the beneficiary’s death, the benefit is paid until the end of the month.122
Beneficiaries drawing cash benefits have to ask for advice from a professional
carer in order to maintain the level of care quality. Beneficiaries in level I and II
(new law: level 2 and 3) are to be supervised every 6 months, beneficiaries in level
III (new law: level 4 and 5) every 3 months. For making use of this advisory service
the beneficiaries get 22 € or 32 €, respectively.
2.7.3.3 Combination of Cash Benefits and Benefits in Kind
A combination of reduced cash benefits and reduced benefits in kind is possible.

The beneficiary can opt for the respective percentages every 6 months.123
2.7.3.4 Additional Benefits for Persons Living in Supervised Groups

(Ambulant betreute Wohngruppen)
Dependent persons may receive a supplement of 205 € (as from 2017: 214 €) if they
live together with two or up to 11 more persons in a common apartment and have
jointly appointed one person to assist them with activities regarding organization
and administration, or regarding participation in society or to assist in the
household.124
2.7.3.5 Care at Home in Cases Where a Carer Is Not Available
In cases where a carer is not available for a certain time (e.g. holidays, illness) the
beneficiary is entitled to a replacement benefit (Verhinderungspflege) of 1612 €125
for up to 6 weeks per calendar year. The benefit is also paid if the holidays are spent
abroad.126 The person who stands in for the carer must not be a relative or related by
marriage up to the second degree. If a person living in the household or a close
relative stands in for the absent carer, the maximum amount equals the cash benefit
(Pflegegeld).
121
§ 37 SGB XI.
122
123
§ 38 SGB XI.
124
§ 38 a SGB XI; Verfasser (2017), pp. 27.
125
§ 39 SGB XI.
126
BSG 20.4.2016, Az. B 3 P 4/14 R.
2.7.3.6 Auxiliary Means for Care (Pflegehilfsmittel) and Measures

to Improve the Domestic Environment (wohnumfeldverbessernde
Maßnahmen)
The long-term care insurance may pay a monthly sum of up to 40 € for consumable
auxiliary means for care.127 Technical devices (e.g. wheelchair, mobile bed) are to
be rented from a provider. An allowance of up to 4000 € is paid for measures that
improve the home environment (e.g. better accessibility to rooms, larger bathroom,
higher toilet etc.). In the case of two or more persons living together the maximum
is an extra payment of 16,000 €).
2.7.4 Semi-Inpatient Care (Teilstationäre Pflege) and Short-Term Care

(Kurzzeitpflege)
2.7.4.1 Day Care and Night Care
Dependent persons who need day care or care at night due to the circumstance that
their care provision at home is not sufficient or should be completed or intensified
could receive 468 € in level I, 1144 € in level II, 1612 € in level III (as from 2017:
level 2: 689 €, level 3: 1298 €, level 4: 1612 €, level 5: 1995 €).128
2.7.4.2 Short-Term Care (Kurzzeitpflege)
In exceptional cases short-time care is granted for up to 4 weeks. The maximum

payment amounts to 1612 €.129
2.7.5 Full Inpatient Care (Vollstationäre Pflege)
2.7.5.1 Benefits in General
If care at home or semi-inpatient care is not sufficient, dependent persons are

entitled to full inpatient care.130 The long-term care insurance pays a fixed amount
that covers the costs for care, for social care and for medical care. As from 1 January
2015, the benefit amounted to 1064 € in level I, to 1330 € in level II, and to 1995 € in
127
128
§ 41 SGB XI.
129
§ 42 SGB XI.
130
§ 43 SGB XI.
150 H.-J. Reinhard
level III and in exceptionally severe cases (e.g. apallic syndrome, severe dementia,
terminal stage cancer). Beneficiaries who choose full inpatient care but have not
been assessed accordingly, receive only a subsidy that is equal to the amount of
benefits in kind.131 As from 1 January 2017 the amounts changed to 770 € for level
2, 1262 € for level 3, 1775 € for level 4 and 2005 € for level 5. Persons in level
1 who choose full inpatient care receive a monthly supplementary benefit of 125 €.
2.7.5.2 Benefits for Persons Living in Special Facilities for the Disabled
Persons living in special facilities for the disabled that promote participation in the
labour market and participation in society, schooling or education of disabled
people receive 10% of the institutional costs up to a monthly maximum of 266 €.
2.7.6 Benefits for Family Carers
2.7.6.1 Contributions to the Social Security System
Carers are persons who, on a non-profit basis, provide care to a dependent person in
his or her domestic environment for at least 14 h per week.132 Carers are insured
under the public pension system.133 Contributions are paid either by the long-term
care insurance or the mandatory private insurance company.134 The amount of
contributions depends on the level attributed to the dependent person and the
necessary time for care.135 Non-professional carers are also insured for work
accidents but only for accidents that are directly related to the care activities.136
Insurance for health care depends on the individual status but many carers are
insured via their salaried partners under the so-called family insurance scheme
(Familienversicherung).137 If this is not the case, they have to register with the
voluntary insurance ( freiwillige Versicherung).138
131
§ 36 Para. SGB XI.
132
§ 19 SGB XI.
133
§ 3 Para. 1b SGB VI.
134
§§ 170 Para. 1 No. 6, 176a SGB VI.
135
§ 166 Para. 2 SGB VI.
136
§ 44 SGB VII.
137
§ 10 SGB V.
138
§ 9 SGB V.
2.7.6.2 Additional Benefits for Care Leave and Short-Term Impediment

to Work
Employees who have agreed on care leave get supplementary payments for health
care insurance and long-term care insurance.139 They are also insured for unem-
ployment.140 If the employer does not continue to pay the salary, non-professional
utzungsgeld).141
carers may receive a subsidy for up to 10 days (Pflegeunterst€
2.7.6.3 Care Training Courses for Next-of-Kin and Volunteers
The long-term care insurance shall offer care training courses for next-of-kin and
volunteers.142 The courses must be free of charge and are to improve the knowledge
of care provision, as well as to prevent excessive corporal or mental burdens on the
carer. Training shall also take place in the domestic environment of the person to be
cared for.
2.7.7 Benefits for Insurees with a Substantial General Need for Care
2.7.7.1 Beneficiaries
The law143 stipulated a catalogue of 13 criteria that were likely to require increased
care, including, but not limited to: tendency to run away, not to realize dangerous
situations, aggressive or inadequate behavior, day-night rhythm disturbances,
excessive instable or uncontrolled emotional behavior or therapy-resistant depres-
sion. At least two of these 13 criteria had to be manifest in a symptomatic person
dependent on care. It is important to note that this subsidy has been introduced also
for persons who have not yet been attested a level of care. This is why this subsidy
was often called “care level 0”. Now, the law sets more general criteria and the
amount is equally fixed for all beneficiaries.
2.7.7.2 Additional Benefits for Care and Relief Care
Beneficiaries entitled to this type of care can receive an extra payment of up to

125 € to bear the extra costs for care and supervision (e.g. for day or night care,
short-term care, low-threshold services). Persons with dementia who do not meet
139
§ 44a Para. 1 SGB XI.
140
141
142
§ 45 SGB XI.
143
§ 45a SGB XI.
152 H.-J. Reinhard
the abovementioned criteria may nevertheless receive up to 125 € to finance their

costs for care and surveillance.144
2.7.7.3 Development of Care Structures
Since the number of persons with dementia is increasing, the development of new
care structures, in particular low-threshold services is essential. The long-term care
insurers have to subsidize new models and projects to the tune of 25 million € per
calendar year.145
2.7.7.4 Promotion of Volunteer Structures and Self-Help
The long-term care insurers may also deploy part of the abovementioned monies for
the promotion of volunteer structures and self-help. They may use 0.10 € per
insured person to support self-help groups and organizations that offer advice to
next-of-kin or other persons involved in non-professional care.
2.8 Promotion of New Forms of Living Together
Since fewer and fewer people want to live in residential homes, the law promotes
new forms of living together. Persons can receive up to 2500 € (maximum 10,000 €
per group) to have their common home remodeled in order to make it old-age
friendly and barrier-free.146
2.9 Financing
As of 1 January 2015, the contribution rate to long-term care insurance was 2.35%.
The percentage rose by another 0.2% from 1 January 2017. In general, employees
and employers share the contribution (1.175% each). In the federal state of Saxony,
employees have to pay 1.675%, while the employer pays 0.675%. The reason for
this is that Saxony has maintained a public holiday in November, while in all other
federal states this public holiday has been abolished to finance long-term care
insurance and give financial relief to employers.
144
§ 45b Para. 1b SGB XI.
145
§ 45c SGB XI.
146
§ 45e SGB XI.
Persons over 23 years of age without any children have to pay an extra contri-
bution of 0.25% nationwide.
Pensioners and persons without an employer have to pay the full contribution
rate. Family members (partners, children) without income or with a small income
are insured via a salaried family member (Familienversicherung).147
2.10 Relationship Between Long-Term Care Insurers

and Benefit Providers
2.10.1 General Principles
Long-term care insurers have the obligation to guarantee an adequate and compre-
hensive provision of long-term care that is up to date in terms of medical and care
standards (service guarantee—Sicherstellungsauftrag). They conclude contracts
with care providers.148 The long-term care insurers have to monitor the multitude
of providers, ensure their independence and review their self-concepts
(e.g. religious attitudes) with regard to the fulfilment of their objectives and
duties.149 In these contracts, the long-term care insurers have to ascertain that the
expenditures do not excess the revenues (guarantee of revenue stability—
Beitragsstabilit€
at). If the contract does not comply with this requirement it is
invalid by virtue of law.150
2.10.2 Relationship to Care Facilities
Outpatient care providers (Pflegedienste) are independent institutions that provide

care and household care services to a dependent person at home, under the perma-
nent responsibility of a person that has obtained a qualification in the field of care
provision.
Inpatient care providers (Pflegeheime) are independent institutions where depen-
dent persons receive full-time care (vollstation€ ar) either during the day or at night
(teilstation€ar).151
Both outpatient and inpatient care must be given under the permanent respon-
sibility of a (supervising) person that has obtained a qualification in the field of care
provision. At present, the German system lists three different official types of care
professions as codified in different laws: Carers for sick persons (Gesundheits- und
147
§ 56 SGB XI.
148
§ 71 SGB XI.
149
§ 69 SGB XI.
150
§ 70 SGB XI.
151
154 H.-J. Reinhard
Krankenpfleger/in), carers for sick children (Gesundheits- und

Kinderkrankenpfleger/in)152 and carers for elderly persons (Altenpfleger).153 So
far, professional training has not been free in general but depended on the particular
training school. In some training schools, the students have had to pay considerable
fees. As of 1 January 2018, a new federal law154 will standardize the professional
training modalities and set common standards and rules, thus creating a new
professional profile called the “qualified caregiver” (Pflegefachmann/
Pflegefachfrau). The idea is that all qualified persons, after passing their profes-
sional examination, shall be able to work with any person that needs care indepen-
dent of age and impediment. Critics say that this is the wrong way and that this
overly general approach will result in a lack of specialist knowledge.155 However,
this law shall also help to make the profession of caregiving more attractive, a valid
criterion with a view to coping with the demographic challenge.156 Training will
then be free of charge and trainees will receive remuneration during the 3 years of
their theoretical and practical schooling. The law also for the first time opens up the
possibility to obtain a university degree in the field of professional care. Some
experts are skeptical with regard to this academic broadening of the professional
profile.157
Apart from having to pass an exam, the person intending to work as a carer must
prove 2 years of practical experience within the 8 years prior to starting the job.
Moreover, for recognition as an eligible carer, the person has to pass prior voca-
tional training for leadership functions that comprises at least 460 h.158
The law clarifies that an institution whose main purpose is medical prevention,
medical rehabilitation, participation in the labour market or in society, schooling or
the education of sick or disabled persons does not fall under the definition of care
provider.159
Formally, the Association of Long-Term Care Insurers at state level
(Landesverband der Pflegekassen) concludes the care provision contract
(Versorgungsvertrag). The supra-local agency for social assistance benefits must
give its consent. The contract is binding for all long-term care insurers in Germany.
The care provider on the other side must have obtained approval as a certified care
institution (zugelassene Pflegeinrichtungen). In addition to the requirements men-
tioned above, the care provider must guarantee compliance with labour law and pay
152
Gesetz über die Berufe in der Krankenpflege (Krankenpflegegesetz—KrPflG) of 16 July 2003
(BGBl. I p. 1442).
153
Gesetz über die Berufe in der Altenpflege (Altenpflegegesetz—AltPflG).
154
Gesetze zur Reform der Pflegeberufe (Pflegeberufereformgesetz—PflBRefG) of 17 July 2017,
BGBl. I 2581.
155
Blatt (2016), pp. 12–13; Laumann and Buntenbach (2016), p. 14.
156
Becker (2013), p. 123–127.
157
Rüddel (2015), pp. 1000–1001.
158
159
the usual salary. It must commit itself to implementing and developing a quality
management system and to applying expert standards. If the long-term care insurer
can choose between several suitable care providers, it shall primarily select either
charity or private institutions. As long as they fulfil the requirements, care providers
have an enforceable entitlement against the long-term care insurer to conclude a
contract.160 The contract must be in written form and may be terminated within
1 year notice. However, the Association of Long-Term Care Insurers at state level
may only, in written form, terminate the contract if the provider does not comply
with the requirements or repeatedly and severely infringes its duties. In very severe
cases, the contract may terminate with immediate effect.161
Under participation of the Medical Service of the Health Funds and the Associ-
ation of Private Health Insurers, the Associations of Long-Term Care Insurers at
state level conclude common and standardized framework contracts
(Rahmenvertrag) with the associations of outpatient and inpatient care providers
at state level. The respective agencies providing social assistance benefits are also
involved. These framework contracts are directly binding for all long-term care
insurers and all care providers in Germany.
In particular, these framework contracts162 stipulate the content of care benefits
provision and delimitations to other benefits; general conditions for care provision
(e.g. billing, certificates, reports; infrastructure in human resources163 and in mate-
rial164; checking the necessity and duration of care services; discounts for tempo-
rary absence (e.g. hospital stays); access to and procedures for reviews.165 A
common arbitration board shall solve possible conflicts.166
2.10.3 Relationship to Other Benefit Providers
Long-term care insurers may conclude contracts with suitable individuals with a
view to care provision and home care services. This shall help the dependent person
to lead, as much as possible, an independent and self-determined life or correspond
160
§ 73 Para. 2 SGB XI. The competence for enforcement lies with the social court (Sozialgericht).
161
§ 74 SGB XI.
162
The federal Wohn- und Betreuungsvertragsgesetz of 29 July 2009 (BGBl. I, p. 2319), amended
by Art. 2 Law of 19 February 2016 (BGBl. I, p. 254) regulates the individual rights and obligations
under civil law between the person in inpatient care and the care provider.
163
The general requirements for the qualification of staff are stipulated in the federal
Heimpersonalverordnung of 19 July 1993 (BGBl. I, p. 1205), amended by Art. 1 Regulation of
22 June 1998 (BGBl. I, p. 1506).
164
The minimum standards for staff, equipment and building are regulated at state level by the
respective Heimgesetz.
165
For details see § 75 Para. 2 SGB XI.
166
§ 76 SGB XI.
156 H.-J. Reinhard
with the particular wish to arrange the necessary support.167 Contracts with next-of-
kin and persons related by marriage up to the third degree who live in a common
household with the dependent persons are prohibited.168
In practice, long-term care is often provided by non-qualified persons, mainly
women, coming from Eastern Europe. They work in the household as self-
employed persons under poor working conditions and without any substantial rights
to social security and labour law. Most of them do not receive adequate payment but
earn by far more than in their country of origin.169 Due to the lack of professional
qualification they are not recognised as formal carers. It is estimated that some
150,000–200,000 persons work in this grey or even black market.170 However, for
most dependent persons it is cheaper to pay a migrant worker out of their own
pocket than receiving the benefit and paying a qualified carer. Moreover, these
migrants living in the household are available round the clock and on weekends
whereas formal carers observe labour law and have access to social security
benefits.
The Association of Long-Term Care Insurers at state level concludes contracts
on the provision of auxiliary means with providers or their associations. It also
elaborates a catalogue of auxiliary means covered by insurance.171
2.11 Payment for Care
2.11.1 General Rules
The services of approved long-term care homes and care service providers must be
reimbursed satisfactorily. As regards inpatient care, this means appropriate pay-
ment for patient accommodation and meals. Payment must, however, not exceed
the investment costs for the building, as these expenses are, as a rule, already
financed through federal state budgets.172 If this funding is insufficient, persons
dependent on long-term care may be asked to pay a contribution. The same applies
if the respective facility is not legally eligible for federal state funding.173 The
167
This provision correlates with § 17 SGB IX. A disabled person may opt for a personal budget
(Pers€onliches Budget) instead of benefits in kind or services in order to be able to better participate
in social life. In practice, this option for a personal budget is not chosen too often due to its overly
bureaucratic procedure and a certain reluctance ve authorities.
168
§ 77 SGB XI.
169
Satola (2015).
170
Tießler-Marenda (2012), pp. 141–146.
171
§ 78 SGB X. For details see the catalogue of auxiliary means of the National Association of
Statutory Health Insurance Funds at https://hilfsmittel.gkv-spitzenverband.de/hmvAnzeigen_
input.action.
172
§ 9 SGB XI.
173
81 SGB XI.
facility receives additional (financial) means for the training of caregivers174 and
the instruction of honorary assistants.175
2.11.2 Payment for Inpatient Care
Reimbursement for inpatient care is fixed in a long-term care rate agreement made
between the long-term care funds, further competent social insurance and social
assistance agencies and the respective long-term care institutions. Each long-term
care institution must conclude a separate agreement.176 The parties involved may
also form specific commissions on long-term care compensation in order to nego-
tiate agreements.177 Appropriate payment for patient accommodation and meals
must also be negotiated.178 Payment is stipulated for each calendar day.179 In cases
where the facility—by way of activating or rehabilitative measures—manages to
effect a lower care level for the person dependent on long-term care, an additional
lump sum of 1597 € is paid180; the same applies if additional attendance181 and
additional care services are effected.182
2.11.3 Payment for Outpatient Care
Payment for outpatient services must also be regulated by way of compensation

agreements.183 The agreements must, above all, take into consideration the time
needed for delivery of the care service. So far, the option of a standardized fee
schedule to be issued by the Federal Ministry has not been—and is not likely to
be—actualized.184
174
§ 82a SGB XI.
175
§ 82b SGB XI.
176
§ 85 SGB XI.
177
§ 86 SGB XI.
178
§ 87 SGB XI.
179
§ 87a SGB XI.
180
181
§ 87b SGB XI.
182
§ 88 SGB XI.
183
§ 89 SGB XI. Cf. e.g. compensation agreement of AOK Baden-Württemberg and others during
the period of 01 March 2016 to 31 December 2016, https://www.vdek.com/LVen/BAW/Service/
Pflegeversicherung/Ambulante_Pflege/_jcr_content/par/download_6/file.res/AP_Verg%C3%
BCtung_Muster_20150301.pdf.
184
O’Sullivan (2014) rec. 26.
158 H.-J. Reinhard
2.12 Integrated Care (Integrierte Versorgung)
Integrated care means dovetailed long-term care service provision combining long-
term care services according to Social Code Book (SGB) XI and medical care
services in terms of SGB V. The parties involved now have the right to enter into
specific agreements.185
2.13 Care Support Centres (Pflegest€

utzpunkte)
Care support centres are intended to offer comprehensive advice and support to
persons dependent on long-term care and their relatives close to their home. They
are established jointly by the long-term care funds and the health funds.186
2.14 Quality Assessment
Quality assessment in long-term care has been an ongoing issue in the public
debate, particularly with regard to inpatient care. Time and again, the press has
reported on neglected long-term care patients and staff shortage. An official nursing
care control system (“Pflege-TUV”) € was introduced in order to effect greater
transparency. The Medical Service of the Health Funds has been commissioned
to visit long-term care facilities at regular intervals and to assess their service
quality. The same applies to outpatient care services. The results are available to
the public through the Internet and must also be displayed in the respective care
facility.187 Standardized criteria apply; they are binding. Each criterion is reviewed
and assessed individually. With regard to long-term care homes, 82 criteria in total
are to be evaluated. Sixty four criteria are reviewed by the Medical Service of the
Health Funds (MDK), and 18 are established via customer surveys. As regards
domiciliary care services, 37 of an overall of 49 criteria are reviewed directly by the
Medical Service, while 12 are established via customer surveys. However, this
nursing care control system has not proved its worth, as the individual criteria are
not weighted according to relevance in the calculation of the average mark. For
instance, well-serviced wound dressing is given the same weight as a clearly legible
meal plan. Due to this, most care facilities received good marks, even though
deficiencies (e.g. bed sores) were evident in various cases. The average mark for
the provision of long-term care in Germany was 1.3, equalling grade A; this mark,
however, has very little to do with reality and is not convincing. Therefore, the
185
§§ 92b SGB XI, 140a Para. 3 Sent. 1 SGB V.
186
§ 92c SGB XI.
187
§ 115 Para. 1a SGB XI.
representative for long-term care issues of the German Federal Government

announced on 1 April 2015 that the current system would be suspended with effect
from 1 January 2016. A committee for care quality assessment would then have to
develop a new procedure, which was scheduled to become effective only in 2018.
An interim solution was to be provided for the period in between. The health funds
would continue to publish their reports, however without any grading.
2.15 State Subsidies for Private Long-Term Care Provision
It is foreseeable that the benefits and services offered by the statutory social long-
term care insurance will not suffice in the long run; therefore, supplementary
private long-term care insurance arrangements are financially supported by the
government. Accordingly, insured persons who conclude a certified contract with
an insurance company receive a subsidy of 5 € per month.188
2.16 Long-Term Care Provision Fund
Currently, the social long-term care insurance system shows a surplus of funds;
however, due to the demographic trend it will require more financial resources in
the future. To cater to the rising demand, a long-term care provision fund has been
established. It is commonly known as “Pflege-Bahr”, named after the former
Minister Bahr. It consists of special assets which are administered by Deutsche
Bundesbank (German Federal Reserve Bank). To increase these special assets, the
long-term care funds have been obligated to pay into the asset fund, from
20 February 2015 until December 2033, a monthly proportion of 0.1% of revenue
from contributions. From 2035 onwards, the special asset fund can in turn be used
for stabilizing the insurance contributions.189
3 Long-Term Care As a Social Assistance Benefit (Hilfe zur

Pflege)
Long-term care insurance has always been conceived as a “partial coverage insur-
ance”. The idea was to reimburse insured persons for part of the costs incurred for
care services. The remaining costs were to be paid from the own income (e.g. old
age pension) or assets of the insured person. A second objective of the introduction
188
§§ 126-130 SGB XI.
189
§§ 131-139 SGB XI.
160 H.-J. Reinhard
of social long-term care insurance was to relieve the municipal budgets, as it was
them that previously had to cover a substantial part of the costs via social assistance.
At first, a relief of sorts was achieved. In the meantime, however, the situation has
changed again. The replacement rate of old age pensions, i.e. the proportion of old
age pensions in the amount of a person‘s previous net income, has been steadily
decreasing. The growing number of irregular employment histories has reinforced
this phenomenon. What is more, the pension increases of recent years have been
below the respective rates of inflation, thus by tendency reducing the purchasing
power of old age pensions. Finally, the increase in life expectancy has led to the
circumstance that assets are likely to be used up eventually, leaving a coverage gap
which has to be filled by tax-financed social assistance. The latter is also responsible
for persons who are not entitled to benefits from social long-term care insurance
(e.g. due to the fact that they have not fulfilled the required insurance period).
Foreigners residing in Germany on a merely temporary basis are generally not
entitled to social assistance benefits.190 Foreign nationals with a secure residential
status as a rule enjoy the same rights as German nationals on grounds of European
and international law.
Until end 2016 the Law on Social Assistance used a different legal concept on
long-term care than the SGB XI which resulted in some discrepancies in applica-
tion. The last reform191 integrated the new concept of long-term care also in the
Law on Social Assistance192 so that legal results are more homogeneous than in
the past.
Before any long-term care assistance benefit can be claimed in accordance with
SGB XII, the applicant must use up his own funds from his own income or assets.
Due to the nature of social assistance in its function as subsidiary assistance, the
exemption amounts are relatively low. If the applicant lives in his own house or flat,
he cannot be expected to move, as long as the living space is appropriate. Selling the
property is therefore not necessary; however, the property may be mortgaged in
favour of the respective social assistance authority and turned to account if the
situation changes (e.g. due to the patient’s death or transferral to inpatient care).
Irrespective of the question whether it makes socio-political sense to refer a
substantial part of the older population to means-tested social assistance in the
case of long-term care dependency, this issue poses a big problem especially to
younger persons with disability who are gainfully active.
On the one hand, great efforts have been taken to enable persons with disability
to participate in social life and to receive vocational or academic training; quite a
few of them also manage to find an interesting and well-paid job. Having said this,
they often need personal assistance in order for them to be able to lead a self-
determined life, with costs for such assistance going far beyond the benefits granted
190
§ 23 SGB XII.
191
Drittes Gesetz zur Stärkung der pflegerischen Versorgung und zur Änderung weiterer
Vorschriften (Drittes Pflegestärkungsgesetz–PSG III) of 23.12.2016, BGBl. I 3191
192
§§ 61-66a SGB XII.
by the (non-means-tested) social long-term care insurance according to SGB

XI. Despite their gainful activity, these persons will not be able to accumulate
savings for potential exceptional expenses (such as a holiday), let alone for old age.
They will thus be driven into life-long dependency on social assistance, a situation
which is generally felt to be humiliating. What is more, the prospect of factually
having barely more funds available with a regular income than without does not
provide any motivation for engaging in gainful employment.193 Previous attempts
through various initiatives to grant the above group of persons higher personal
allowances have failed for financial reasons. The new Participation Act
(Bundesteilhabegesetz) increased income limits but does not substantially address
this problem either. Another problem that is not yet really satisfactorily solved is
the provision of care in workshops for disabled persons (Werkst€ atten f€
ur behinderte
Menschen—WfbM)194 although some former legal restrictions that prevented some
forms of care were abolished.195
A further social issue with a view to the necessity of claiming social assistance
benefits in the case of long-term care dependency is the practice of the social
assistance authority to resort to assets of partners and children of dependent
persons. Spouses or registered partners are mutually obliged to pay maintenance.196
Pursuant to civil law, direct relatives have—irrespective of the degree of kinship—a
mutual obligation to pay maintenance.197 This does not only apply to the relation-
ship of parents towards their children, but inversely so also to that of children
towards their parents (and even towards their grandparents or great-grandparents).
Children are obliged to pay maintenance even if they have, since their youth, had no
contact with the respective parent that has meanwhile become dependent on long-
term care.198 Only in very extreme constellations is it possible, upon decision of the
Supreme Court, for persons to be exempted from their obligation to pay
maintenance.199
In this respect, a distinction is made between the legal obligation of family
members to pay maintenance and the liability for maintenance on the part of the
social assistance authorities. While the legal obligation of family members to
provide support is unrestricted, social assistance legislation limits the recourse to
personal assets to first degree relatives (i.e. children and parents). Children-in-law,
on the other hand, are not obliged to pay maintenance according to civil law. Yet, a
parent dependent on long-term care can claim maintenance from his or her own
child. If the latter is married or in a registered partnership with a high-income
partner, he or she can claim maintenance from this more affluent partner, whose
193
Becker et al. (2015), pp. 13–30; Baake (2017).
194
§§ 136 f. SGB IX; § 10 WVO.
195
§ 37 SGB V; Breyer (2016), pp. 445–461.
196
§ 1360 BGB.
197
§§ 1601, 1608 BGB.
198
BGH 12.2.2014, XII ZB 607/12).
199
§ 1611 BGB, BGH 19.5.2004, XII ZR 304/02.
162 H.-J. Reinhard
obligation for the maintenance of family members of his own is in turn taken into
account.200 This means that the high earner must, indirectly, pay for parents-in-law
in terms of social assistance legislation, despite the fact that under civil law he/she
is not obliged to pay any maintenance. What is more, for many children the problem
is not so much the fact that they are to pay a financial contribution to the costs for
long-term care provided to their dependent parents, but rather the unpredictability
of the amount. There are no consistent uniform guidelines, and it is particularly the
entering into the equation of other personal or financial burdens (e.g. mortgages/
loan debts), as well as the way in which obligations are enforced, that are handled in
different ways by the various social assistance authorities.
4 Long-Term Care Benefits Under Other Systems
4.1 Federal Relief Act (Bundesversorgungsgesetz, BVG)
Originally, the Federal War Victims Relief Act (Kriegsopferentsch€ adigunggesetz)

was the federal law on war pensions for soldiers and their survivors. Meanwhile, it
has been extended to other groups which suffered injury or death and the state bears
the responsibility (e,g. victims of crime, victims of vaccination). The law does not
use the term need for care but mentions the term helplessness.201 Helpless persons
are persons with invalidity who require the assistance of another person on a daily
basis for a range of frequently and regularly performed activities in order to secure
their individual subsistence. This also applies to cases where assistance is required
in the form of supervision or instructions in order to enable the dependent person to
perform the mentioned activities, or if actual assistance is not continually required
but constant readiness to offer such assistance is.
An additional long-term care allowance of 311 € (care level I) is paid every
month. Depending on the type of pathology, e.g. if the health of the person involved
is impaired in such a way that he or she is permanently confined to bed, or if
extraordinary care is required, the additional care allowance is, in accordance with
the scope of care required for each individual case, to be increased to either 531 €,
755 €, 969 €, 1258 € or 1548 € (respectively, for care levels II, III, IV, V and VI).
For establishing helplessness and assessing the respective care levels for the
additional care allowance, the principles of a regulation202 appurtenant to §
30 Para. 17 apply. Blind persons receive a minimum additional care allowance
equal to care level III. Persons with brain injuries with a degree of damage of
100 receive an additional care allowance equal to at least level I.
200
LSG Rheinland-Pfalz, 18.2.2016, L 5 SO 78/15.
201
§ 35 BVG.
202
Regulation appurtenant to § 30 Para. 17 BVG.
If assistance is provided by third persons within the meaning of Para. One on the
basis of an employment contract, and if the appropriate costs incurred for the care
assistance exceed the amount of the stated fixed additional care allowance, the
additional care allowance is adjusted to the actual costs. In cases where impaired
persons live in a common household with their spouses, partners or a parent, the
additional care allowance is to be increased in such a way that the family will only
have to pay a quarter of the appropriate costs incurred from the fixed additional care
allowance, and that the family can keep at least half of the fixed additional care
allowance. In exceptional cases, the remaining part can be increased up to the full
amount of the fixed additional care allowance, if the spouse, partner or parent of a
person receiving additional care allowance equal to at least level V provides an
unusual extent of additional assistance on top of the assistance delivered by third
persons. If, for a limited time, costs arise from help services required from third
persons, particularly if this is due to the sick leave of a caregiver, the additional care
allowance is to be increased for a maximum of 6 weeks to the extent that the person
requiring care services still has the same amount of funds available as before the
temporary incurrence of extra costs. No upward adjustment is granted if the spouse,
partner or parent does not provide any long-term care services for a longer time.
During inpatient treatment the payment of additional care allowance is, after
referral to the respective facility, continued until the end of the first month of their
stay for recipients of care allowance levels I and II or until the end of the twelfth
month of their stay for recipients of all other care allowance levels. In special cases,
the payment of additional care allowance during inpatient treatment can be contin-
ued beyond that and until the end of the calendar month before actual dismissal
from the hospital or facility.
If helplessness and the need for inpatient treatment are recognized as a combined
contingency, or if helplessness is established during inpatient treatment, no addi-
tional care allowance can be claimed during the time before the month of dismissal.
During this period, a care subsidy can be claimed. A person with invalidity living in
a common household with his or her spouse, life partner or a parent may receive a
care subsidy amounting to a quarter of the fixed additional care allowance
corresponding to care level I. If greater involvement is required from a medical
point of view from the spouse, life partner, parent or any other person close to the
care allowance recipient, a care subsidy up to the full fixed additional care allow-
ance corresponding to care level I may be paid in duly substantiated exceptional
cases.
If no appropriate long-term care can be provided to the person with invalidity
due to the nature of the invalidity, the costs for non-temporary inpatient care will be
covered if they include accommodation, board, attendance and long-term care
services. These costs are offset against the care recipient’s pension(s) and related
benefits. In any case, persons with invalidity must be left with a minimum amount
to live on in order for them to be able to cover further needs.
164 H.-J. Reinhard
4.2 Workers’ Compensation Act (Arbeitsunfallversicherung)
If a person becomes dependent on long-term care due to a work accident or

occupational illness, it is the workplace accident insurance that is liable for benefits.
In this context, too, the term helplessness is used.203 In cases where insured persons
are so helpless that they require, to a great extent, assistance with the usual and
recurring activities of daily living, they either receive care allowance or are
provided a domiciliary caregiver or granted inpatient care. The care allowance is
a fixed sum of between 351 € and 1400 € (West) and 330 € and 1321 € (East),204
depending on the type and severity of damage to a person’s health and on the scope
of necessary assistance. These amounts are adjusted simultaneously with the
modification of pensions of the statutory pension insurance and according to the
factor relevant for the adjustment of benefits which, in turn, depend on the annual
salary. If the expenditure for a caregiver exceeds the care allowance, the allowance
may be appropriately increased.
During inpatient treatment or accommodation of the insured person in either a
facility enabling participation in working life or in a sheltered workshop, care
allowance payments are continued until the end of the first calendar month after
referral of the person to the facility; payments are resumed with effect from the first
day of the month in which the person is dismissed. All or part of the care allowance
may be paid without interruption during inpatient treatment if a discontinuation
would jeopardize the further care provision of the person dependent on
it. Simultaneously with the modification of pensions, care allowance is adjusted
according to the factor relevant for the adjustment of cash benefits which, in turn,
depend on the annual salary.
Instead of care allowance, the insured person can opt for a professional caregiver
(domiciliary care) or demand to be provided the necessary care in an appropriate
facility with board and accommodation (residential care).
5 Rights of Family Carers
German law continues to focus, to a great extent, on deploying family members as

carers. Still, it is mainly women who assume this responsibility. On the other hand,
the participation of women in working life has increased, which puts them in dire
straits in terms of how to reconcile their family duties with gainful employment.
Usually, they will have to reduce or even fully suspend their gainful activity, and
203
§ 44 SGB VII.
204
As from 1.7.2017.
this will have repercussions on the labour relationship as well as on their social
security status.
5.1 Labour Law
Long-term care dependency often hits family members out of the blue, which
makes it difficult to handle in terms of labour legislation and long-term planning.
It is especially during the first days after long-term care dependency has been
established that a multitude of matters need to be organized; further, the person
suddenly dependent on long-term care will likely need special attention in order to
cope with the new situation. In the past, relatives often used to take their entire
annual holiday in order to deal with this situation.
However, this solution bore certain disadvantages. For a start, the purpose of the
annual leave is to recover from stress and to relax, rather than to organize long-term
care issues for family members. Second, under certain circumstances employees
will not be granted their entire annual holiday in one go, especially if their
companies run a fixed holiday schedule. What is more, the annual leave might
already have been used up.
The Act on Care Leave205 and the Act on Family Care Leave206 was introduced
to solve this dilemma. Accordingly, once long-term care dependency occurs within
the family, an employed person is entitled to a paid leave of 10 days.207 This claim
can be enforced against all employers irrespective of company size. Initially, the
Act did not settle matters regarding payment. This made debatable, at first, whether
employees in this situation were entitled to a continued salary. Meanwhile, how-
ever, consensus has been reached that continued pay can rightfully be claimed, as it
was, in this case, absence from work through no fault of one’s own, and therefore
comparable with sick leave. Since 1 January 2015, a payment in lieu of the salary
has been provisioned for this purpose termed care support allowance
(Pflegeunterst€utzungsgeld).208
Care provided to a close relative when the latter is sick does not, however, count
as an emergency care situation. In order to be able to claim care-related leave of up
to 10 days plus care support allowance, the close relative must be likely to fulfil the
requirements of long-term care dependency within the meaning of §§ 14 and
15 SGB XI. The remote eventuality in itself of long-term care dependency to
occur is not sufficient. Rather, facts must be delivered that are indicative of the
high probability of long-term care dependency to occur. Care support allowance is
granted by the long-term care fund or, respectively, the private insurance company
205
Pflegezeitgesetz—PflegeZG (Act on Care Leave) of 28.5.2008, BGBl. I 874, 896
206
Familienpflegezeitgesetz—FPfZG (Act on Family Care Leave) of 6.12.2011, BGBl. I 2564.
207
§ 2 PflegeZG; Becker (2015b).
208
§ 44a SGB XI.
166 H.-J. Reinhard
of the close relative dependent on long-term care, but only upon application—to be
made immediately after occurrence of the contingency—and upon submission of a
medical statement. Persons who work in a “minijob”,209 too, are entitled to care
support allowance. Per person dependent on long-term care a family carer is
entitled to a maximum leave of 10 working days; if there is more than one family
carer, the 10 days’ leave might have to be split among them.
The following qualify as close relatives who are entitled to care support allow-
ance: grandparents, parents, parents-in-law, step-parents; spouses, life partners,
partners in a de-facto marriage or with similar status; brothers and sisters, brothers-
in-law and sisters-in-law; children of one’s own, adopted or foster children; the
children, adopted or foster children of the spouse or life partner; children-in-law
and grandchildren.210
Self-employed workers, civil servants, and recipients of unemployment benefits
pursuant to SGB II and SGB III who do not work in a salaried position are not
entitled to care support allowance. The amount corresponds to the paid leave for
parents during a child’s sickness (Kinderkrankengeld).211
As a start, the net salary forfeited during the care leave is to be established from
the forfeited contributable income. The gross payment amounts to 90% of the net
income forfeited—or 100% in cases where contributable one-off payments,
irrespective of the extent, were received during the past 12 months before leave
of absence was granted. The amount of care support allowance per calendar day
must not exceed 70% of the contribution limit per calendar day (2017 ¼ 101.50 €)
in the health insurance. The contributions paid to the health,212 pension213 and
unemployment insurances214 are to be covered by the care support allowance. The
recipient of this benefit pays 50% of the contributions respectively; what is more,
80% of the daily gross income is paid by the long-term care fund. If the monthly
income does not exceed 450 €, the responsible authority (e.g. the long-term care
fund) covers the entire costs for contributions.
Following the care leave, the employee is entitled to fully or partly suspend his
or her gainful activity for a further 6 months.215 No legal claim can, however, be
made against employers with a personnel of 15 or less.216 The employment
relationship legally remains in force, but no mutual obligation to perform or to
pay exists. Thus, it is up to the employee himself to compensate for the loss of
income during this time. Partial wage replacement during loss of pay by way of a
209
Employment with payment of up to 450 € per month.
210
§ 7 Para. 3 PflegeZG.
211
§ 45 Para. 2 Sent. 3-5 SGB V.
212
§ 249c SGB V.
213
§ 170 Para. 1 Sent. 2e SGB VI.
214
§ 349 SGB III.
215
§ 4 PflegeZG.
216
§ 3 Para 1 PflegeZG.
social benefit comparable to sick pay was, at one stage, under discussion but in the
end was not turned into law.
What is new, however, is the fact that in order to cushion the risks to a person’s
subsistence, those in need are legally entitled to an interest-free loan. Employees
who take a care leave of up to 6 months are legally entitled to an interest-free loan.
This loan, paid out in monthly instalments, is intended to reduce the impacts of a
wage loss. Employees requiring this can apply for it directly at BAFzA, i.e. the
Federal Office of Family Affairs and Civil Society Functions; after termination of
the care leave the loan is to be paid back in instalments. This regulation includes a
hardship provision, stating that BAFzA may, at the request of the beneficiary, defer
settlement of the loan, i.e. grant respite for repayments in order to avoid particular
hardship for the involved employee. Apart from that, a partial or full loan remission
may be granted in some cases.
Besides care leave for 6 months, there is also the option to take family care leave
for up to 24 months.217 A person who has already reduced or suspended his or her
gainful employment for 6 months can only take family care leave for a further
18 months immediately afterwards. No legal right can be enforced for the intention
to take family care leave. Employers and employees should find a consensus on the
possibility of granting/taking family care leave. With the consent of the employer,
the employee can, for up to 2 years, reduce his or her working hours to 15 h
per week.
During this time the salary is topped up by half of the difference between the
previous salary and the reduced salary. The salary top-up is effected by the
employer. The latter can refinance himself with the help of BAFzA insofar as he
can apply for an interest-free loan.218 The basis for the calculation of the loan is the
regulation on lump-sum net wages for short-time unemployment allowance.219
Once the family care leave has been terminated (post-care phase), the working
hours are readjusted to the original amount. The salary remains reduced, however,
until the monetary advance has been paid back. Thus, with the employer retaining
part of the salary, he will be able to pay back the loan granted by BAFzA. The
employee must insure himself against the risks of death and incapacity for work,
and must conclude a family care leave insurance to the benefit of the employer.
During family care leave, the employee’s labour contract cannot be terminated by
the employer. The employer cannot enforce any claims against the employee
regarding repayment of the advanced salary paid during the family care leave if
the employer terminates the labour contract after the care leave for reasons
unrelated to the conduct of the employee. This equally constitutes a dismissal
protection.
The loan is to be reimbursed within 48 months in monthly instalments.
217
§ 2 FPfZG.
218
§ 3 FPfZG.
219
§ 3 Para 3 FPfZG, Verordnung über die pauschalierten Nettoentgelte für das Kurzarbeitergeld
für das Jahr 2017 of 10.12.2016, BGBl 2016 I 2893.
168 H.-J. Reinhard
5.2 Social Security
5.2.1 Pension Insurance
The German statutory pension insurance system is governed by the principle of

equivalence. The contributions are based, in percentage terms, on the respective
income. A lower income results in correspondingly reduced provision for old age.
During the interruption of a gainful employment no pension entitlements are
acquired. Thus, caregivers are disadvantaged both in terms of salary loss during
their active phase in working life and with a view to the bleak outlook on their
correspondingly low pension in old age.
To compensate this, the legislator has introduced a mandatory insurance scheme
for non-professional caregivers.220 The contributions are paid by the long-term care
fund,221 on the condition that the insured person‘s (usual) place of residence is in
Germany, in the EEA or in Switzerland.222 Further conditions are that long-term
care provision can be expected to be the required for more than 2 months or 60 days
per year; that one or more persons dependent on long-term care are given care
services for a minimum of 14 h per week (so-called Additionspflege, i.e. care
provided simultaneously to several persons); that the carer, besides providing
care services, works a maximum of 30 h per week in gainful employment; that
the respective care recipient gets benefits from the German social or private long-
term care insurance. Non-commercial (non-professional) care services are accepted
if the financial compensation to be paid to the carer by the care recipient does not
exceed the amount granted as care allowance by the long-term care fund (Table 1).
The amount of contributions and, correspondingly, the amount of “income
points” (Entgeltpunkte) for the pension to be paid out later are calculated according
to the recognized care level and the time required for providing the care service.223
Depending on the extent and duration of the care provision, a fixed percentage224 of
the reference value225 is taken as a basis for the calculation of contributions and,
accordingly, of the carer’s later entitlements to an old age pension. If care is
provided for an entire year, the following monthly assessment values and estimated
pension payments apply226:
220
§ 44 SGB VI, § 3 No. 1a SGB VI.
221
170 Para. 1 No. 6 SGB VI.
222
§ 30 Para. 1, 2 SGB I.
223
A distinction is still made between the old German federal states (West) and the new federal
states (East).
224
225
§ 18 SGB IV. The value is adjusted annually and, as of 1 January 2017 has been at 2975 € in the
old or 2660 € respectively in the new German federal states.
226
As from 1.7.2017; Deutsche Rentenversicherung Bund (ed.), Rente für Pflegepersonen, 11 edi-
tion. 6/2017 p. 38; Winkel and Nakielski H (2017d), pp. 24–29.
Table 1 Increase of Pension for Carers

Grade Minimum care/hours per week Pension West/Month Pension East/Month
1 – – –
2
a 10 8.06 € 7.72 €
b 10 6.85 € 6.56 €
c 10 5.65 € 5.40 €
3
a 10 12.84 € 12.29 €
b 10 10.91 € 10.45 €
c 10 8.99 € 8.61 €
4
a 10 20.90 € 20.01 €
b 10 17.76 € 17.01 €
c 10 14.63 € 14.01 €
5
a 10 29.86 € 28.95 €
b 10 25.38 € 24.30 €
c 10 20.90 € 20.01 €
a ¼ only cash benefits are paid (§ 37 SGB XI)
b ¼ a combination of cash benefits and benefits in kind is paid (§ 38 SGB XI)
c ¼ only benefits in kind are paid
If a cared person is not entitled to benefits from the statutory long-term care
insurance, but only from social assistance, the carer is not entitled to statutory
insurance either. However, carers are free to take out voluntary insurance.227 The
social assistance authority may grant a subsidy to the carer’s old age provision if the
latter has not been secured otherwise.228
5.2.2 Health Insurance and Long-Term Care Insurance
Many non-professional carers are non-contributory members in the family health

insurance of their spouse229; this means that they are also automatically
non-contributory members in the long-term care insurance.230 If this is not the
case, caregivers must organize their own health insurance and pay the contributions
themselves. This would be a significant disadvantage, as the contribution payments
to voluntary health insurance231 are usually much higher than those paid into the
227
§ 7 SGB VI.
228
§ 65 Para. 1 SGB XII.
229
§ 10 SGB V.
230
§ 25 SGB XI.
231
§ 9 SGB V.
170 H.-J. Reinhard
statutory health insurance. For one thing, minimum contributions are levied; for
another thing, any type of income (e.g. also rental income or return on capital
deployed) is included in the calculation.232
5.2.3 Work Accident Insurance
Non-professional carers are, by law, insured in the statutory accident insurance,

i.e. against the risk of accidents related to the performance of a caretaking activ-
ity.233 It is the accident insurance authorities of the municipalities that are respon-
sible for the provision of insurance coverage.234 No extra contributions are
levied.235 In fact, in the event of damage or injury, the expenses are shared
among the local authorities236 and are, in this way, ultimately financed from taxes.
5.2.4 Unemployment Insurance
Persons wishing to take care leave237 are obliged to have insurance.238 Ten percent
of the reference value has been set as the contributory amount.239 The contributions
are paid by the long-term care fund.240
Non-professional carers are, furthermore, insured against the risk of unemploy-
ment if they receive a care support allowance.241 The contributions are calculated
on the basis of 80% of the salary forfeited during the care leave242 and are to be paid
by the long-term care fund.243
Carers who are not subject to compulsory insurance by law in accordance with
the mentioned regulations may, upon application, take out voluntary insurance
against the risk of unemployment with the statutory unemployment insurance.244
For them to be able to do so, they must have been compulsorily insured immedi-
ately prior to the application. The contributions are to be paid by the applicant in
232
§ 240 SGB V.
233
§ 44 SGB XI, § 2 Para. 1 No. 17 SGB VII; Dahm (2017), pp. 113–114.
234
§ 129 Para. 1 No. 17 SGB VII.
235
§ 185 Para. 1 Sent. 2 SGB VII.
236
§ 185 Para. 1 Sent. 3.
237
§ 3 Para. 1 Sent. 1 PflegeZG.
238
§ 26 Para. 2b SGB III.
239
§ 345 No. 8 SGB III.
240
§ 347 No. 6b SGB III. On the procedure regarding contribution payments see § 340 Para. 4a
SGB III.
241
§ 26 Para. 1 No. 2b SGB III.
242
§ 345 No. 10 SGB III.
243
§ 345 No. 6b SGB III.
244
§ 28a Para.1 No. 1 SGB III.
full and directly to the Federal Employment Agency.245 Ten percent of the refer-
ence value has been set as the assessment basis for contributions.246
5.3 Civil Law (Inheritance Law)
It is common in families with several children for one child to assume the full care
responsibility for a parent dependent on long-term care, and that is usually the child
who lives in a common household with the care recipient. In the past, the inheri-
tance of the care recipient was distributed in equal parts among the descendants if
no will had been left. To create additional incentives for family members to provide
long-term care to their relatives247 and to acknowledge their efforts made in this
regard,248 inheritance law has, for some time now, provided for a right to compen-
sation. A descendant who had been acting as a carer to the testator for a longer
period of time can claim compensation from the other descendants who are legally
entitled to inherit and who are, like the carer himself, legal heirs to the succes-
sion.249 No compensation can be claimed if appropriate reimbursement has already
been paid or agreed on, or if the respective descendant is, due to services rendered,
legally entitled to other types of compensation (e.g. transfer of property). The
amount of compensation is, for reasons of equity, to be calculated according to
the duration and extent of services rendered, and to the value of the estate. The
compensation is calculated such that the equalization amount is added to the portion
of the inheritance of the co-heir who is entitled to the compensation. All compen-
sation amounts are deducted from the overall estate value if these amounts are to be
granted to co-heirs entitled to compensation.
Example E. has three children A, B and C. C is already dead, leaving behind one
son D. Thus, A, B and D (instead of C) inherit one third each. The value of the estate
amounts to 300,000 €. Normally, each would receive 100,000 €. However, A had
provided long-term care to E for many years and is therefore entitled to a compen-
sation of 30,000 €. These 30,000 € are deducted from the overall 300,000 €. The
remaining 270,000 € are divided by three. As a result, B and D each receive 90,000
€, while A receives the 90,000 € + additional 30,000 €.
This type of settlement has been criticized, as it is difficult to put a value on long-
term care services. In practice, the list of nursing and hospital charges pursuant to
SGB XI is used as a reference, and the decision is based on an overall evaluation of
245
§ 349a SGB III.
246
§ 345b No. 1 SGB III.
247
Teuber et al. (2011), pp. 143–146.
248
Doering-Striening (2012), pp. 531–534.
249
Verfasser (2014b), pp. 134–137.
172 H.-J. Reinhard
the individual case.250 The duration and intensity of the long-term care service, too,
must be evidenced if the co-heirs contest the decision; this may result in the carer
having to furnish documentation or may involve witness interviews.251 Besides,
during the last reform,252 the legislator chose not to include persons other than
direct descendants of the testator in the circle of persons entitled to compensation.
This means that a wife providing long-term care cannot claim compensation from
the children of the testator; similarly, children-in-law, brothers or sisters or
non-related persons (e.g. friends) who provide long-term care are not entitled to
compensation either. If compensation for this group of persons is desired, the only
option for the care recipient is to state this in a will designed for this purpose before
his death. One good thing the reform has brought about is the fact that the carer is no
longer obliged to have suspended his or her gainful employment in order to be able
to claim compensation.
6 Conclusion
To be sure, the introduction of long-term care insurance was a significant step in

social policy. Yet, it was only taken half-heartedly, and this can still be seen today
in its design in terms of a “partial coverage insurance”. The main reason for its
introduction was, primarily, to financially relieve the tax-financed social assistance
system; only its second priority was to cover the population against the risk of long-
term care dependency. Accordingly, a huge coverage gap remains for those depen-
dent on long-term care, that is, a gap they will first and foremost have to close on
their own account. Since this will—in the long run—be impossible to do for the
majority of the population, it is ultimately again the social assistance system that
will be resorted to. This may lead to undesirable effects. For instance, care recip-
ients might be cared for at home even in cases where their family members are
unable to cope with the situation, e.g. in order to keep savings or assets (e.g. the
family home) out of reach of the grip of the social assistance office. If a care
recipient receives long-term care in an inpatient facility, all that family members
can hope for is for the inpatient arrangement “not to last too long”, as this might—
on top of forcing family members to use up the entire assets of the care recipient
first—oblige them to pay additional financial contributions once all assets have
been used up. It is mostly persons in the medium-income bracket who are
confronted with this situation. For high-income families, by contrast, the benefits
and services of the long-term care insurance constitute welcome relief; while
250
Schleswig-Holsteinisches Oberlandesgericht of 15.6.2012—3 U 28/11 –, juris.
251
OLG Frankfurt, Urteil of 19.3.2013—11 U 134/11 –, juris.
252
§ 2057a Para. 1 Sent. 2 BGB as amended by the Act of 24 Sept 2009 BGBl. I 3142 with effect
from 1 January 2010.
low-income earners, on their part, will not have to worry about any action for
recourse due to their financial incapacity to contribute.
A positive development worth mentioning is the fact that the legislator has
mandatorily committed the entire population to be covered by long-term care
insurance. What is more, in the past years the scope of benefits and services has
been extended further, particularly with a view to dementia patients, and new forms
of living arrangements for elderly persons have been promoted in order to supple-
ment the traditional inpatient care schemes in elderly and long-term care homes and
to enable persons dependent on long-term care to lead autonomous lives for as long
as possible. Quality assurance continues to be an important topic.253 Previous
assessment methods have proved insufficient. The main problem seems to be
insufficient or inadequate staffing, resulting mainly from unfavourable working
conditions and the relatively low pay in this sector. In 2016, there has been
mounting evidence of significant sums of money being abstracted from the benefits
system through criminal activity, and this, too, is hugely detrimental to the overall
quality of long-term care provision. Also, several cases of violence against depen-
dent persons and even a series of premeditated murder in residential care homes
committed by staff are reported.
It remains to be seen how the new definition of long-term care dependency will
impact the assessment of care recipients as to their care levels254 and the financial
sustainability of the system.255 In view of the complexity of the new assessment
procedure, initial difficulties can be expected. However, given the long project lead
time and the tests and trials carried out in model projects, it can be assumed that the
new care level categorization will, in future, be based more realistically on the
actual needs of the individual care recipients.
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Winkel R, Nakielski H (2017d) Die neuen Regelungen zum sozialen Schutz für pflegende
Angeh€orige - Bessere soziale Absicherung für Pflegepersonen, SozSich, pp 24–29
Long Term Care in Hungary
József Hajdú and Dóra Lajkó
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178
1.1 Hungary in the Light of Some Statistical Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
1.2 The General Situation of Long-Term Care in Hungary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
1.3 What Makes Care a Risk? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 180
2 Specific Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
2.1 Hungarian Definition of Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
2.1.1 Concept of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
2.1.2 Concept of “Long-Term” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192
2.2 System of Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193
3 Details of the Provision of Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194
3.1 General Benefits for Various Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194
3.1.1 Domestic Care and Domestic Care Due to Signal (Házi segı́tségnyújtás és
Jelzőrendszeres házi segı́tségnyújtás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194
3.1.2 Day Care (Nappali ellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
3.1.3 Family Services (Családsegı́tés) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196
3.1.4 Home Medical Care (Otthoni szakápolás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196
3.1.5 Household Maintenance Subsidy (Lakásfenntartási támogatás) . . . . . . . . . . . . 197
3.1.6 Public Health Care Aid (K€ ozgyógyellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197
3.1.7 Provision of Meals (Étkeztetés) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 198
3.1.8 Regular Social Assistance (Rendszeres szociális segély) . . . . . . . . . . . . . . . . . . . 199
3.1.9 Sickness Benefit (Táppénz) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200
3.2 Social Support Service (Támogató szolgáltatás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200
3.2.1 Temporary Social Assistance (Átmeneti segély) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200
3.2.2 Temporary Widow(er)’s Pension (Ideiglenes € ozvegyi nyugdı́j) . . . . . . . . . . . . 201
3.2.3 Village Caretaker and Farm Caretaker Service (Falugondnoki és
tanyagondnoki szolgáltatás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 202
3.3 Specific Benefits for Child Care and Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 204
3.3.1 Birth Grant (Anyasági támogatás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 204
3.3.2 Breast Milk Supply (Anyatejellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 204
3.3.3 Childcare Grant (Gyermekgondozási dı́j) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 205
3.3.4 Child Home Care Allowance (Gyermekgondozási segély) . . . . . . . . . . . . . . . . 205
J. Hajdú (*) • D. Lajkó

Faculty of Law, University of Szeged, Szeged, Hungary
e-mail: hajdu@juris.u-szeged.hu; dlajko@juris.u-szeged.hu

https://doi.org/10.1007/978-3-319-70081-6_6
178 J. Hajdú and D. Lajkó
3.3.5 Child-Raising Support (Gyermeknevelési támogatás) . . . . . . . . . . . . . . . . . . . . . 206

3.3.6 Family Allowance (Családi pótlék) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 206
3.3.7 Midwife and Health Visitor Service (Védőnői szolgálat) . . . . . . . . . . . . . . . . . . 207
3.3.8 Nursing Grant (Ápolási dı́j) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 208
3.3.9 Orphan’s Allowance (Árvaellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 209
3.3.10 Pregnancy-Confinement Benefit (Terhességi-gyermekágyi segély) . . . . . . . 210
3.4 Disabled Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211
3.4.1 Financial Support for Severely Disabled Persons
(Fogyatékossági támogatás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211
3.4.2 Care Homes for Persons with Disabilities (Fogyatékos személyek
gondozóháza) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212
3.4.3 Disability Benefit (rokkantsági ellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212
3.4.4 Homes for Persons with Disabilities (Fogyatékos személyek Otthona) . . . . 213
3.4.5 Rehabilitation Benefit (rehabilitációs ellátás) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214
3.4.6 Rehabilitation Institutes for Persons with Disabilities (Rehabilitációs
intézmény fogyatékkal élő személyek számára) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 215
3.5 Elderly Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 215
3.5.1 Care Homes for the Elderly (Időskorúak gondozóháza) . . . . . . . . . . . . . . . . . . . . 215
3.5.2 Homes for the Elderly (Idősek Otthona) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 216
3.5.3 Hospice Service at Home (Otthoni Hospice) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217
4 Other Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 218
4.1 Modern Ideas of Management (e.g. Budget) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 218
4.2 Integration Within the LTC System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 218
4.3 Demand and Supply . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
4.4 Policy Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219
4.5 Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220
4.6 Personal Budget Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 222
4.7 Targeting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 222
4.7.1 Recent Situation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 222
4.7.2 A New Experts’ Draft: “The National Social-Political Concept
for the Years 2011–2020 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223
5 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227
1 Overview
The aim of this study is to present an overview of the Hungarian aspects of long-
term care.
As for the material scope, our focus will be on the governmental solutions of the
problem, as non-governmental solutions are not real alternatives in Hungary due to the
individuals’ insufficient willingness to save and their limited financial possibilities.
As regards the scope of protected persons, the focus will be on elderly care, as in
Hungary the long-term care provided for this group of persons is associated with the
greatest problems.
Long Term Care in Hungary 179
1.1 Hungary in the Light of Some Statistical Data
According to the data of the Hungarian Central Statistical Office,1 on 1 January,

2013 the population of Hungary was 9,908,798, among whom 5,192,845 are female
and 4,715,953 are male. The country’s population is ageing, the natural decrease is
3.9 (per thousand inhabitants). About every tenth inhabitant of the country is
70 years old or older, and there are almost 40 old-aged persons (60+) per 100 per-
sons of active age. Some social law figures from 2012:
– the average monthly number of children receiving family allowance was
1,891,431,
– the average monthly number of persons receiving child home care allowance
was 168,037,
– the average monthly number of persons receiving a childcare grant
(gyermekgondozási dı́j) was 81,820,
– the number of persons receiving “financial support for severely disabled per-
sons” (fogyatékossági támogatás) was 114,315; among them 66,351 persons
were over the age of 62,
– Fifty-two thousand one hundred forty persons were cared for in care homes for
the elderly (időskorúak gondozóháza) or in retirement homes (idősek otthona)
– Sixteen thousand two hundred thirty persons were cared for in homes for the
disabled (fogyatékos személyek otthona) or in care homes for persons with
disabilities (fogyatékos személyek gondozóháza).
1.2 The General Situation of Long-Term Care in Hungary
Long-term care in Hungary is still in its infancy—the problem is being worded and
the possibilities for solutions are being searched for now, but the “how” is still
uncertain. So we cannot speak about a real quality management, case management
or personal budget.
Hungary has no separate long-term care system. Several current benefits can
offer a solution to the problem of elderly care only in their effect, but the three
groups of persons protected by long-term care—children, persons living with
disabilities and old people—are in Hungary subsumed under one category in
terms of benefits.
The need for long-term care can be managed for all the three groups of protected
persons basically in two ways: through non-governmental efforts and with the help
of governmental solutions (Tables 1, 2, 3, 4, 5 and 6).
However, non-governmental solutions offer no real alternative for care in
Hungary. This is partly due to the historical development of care, during which
1
Source: www.ksh.hu.
Table 1 Possible solutions to long-term care

Governmental solutions Non-governmental solutions
1. Insurance type 1. Support or life-annuity contract
benefits 2. Contract of inheritance
2. Normative type 3. Hiring a caregiver from one’s own resources
benefits
3. Assistance type 4. Help from civil organizations, religious or other type of
benefits communities
5. Care provided by a relative
Source: the authors
the dominance of the State was emphasized, and partly to the fact that the financial
circumstances of Hungarians are for the most part insufficient to assume the market
costs of care or to finance care entirely from their own resources.
1.3 What Makes Care a Risk?
For lack of space, in the present study we cannot present the complex system of
causes eliciting and underlying the social risks of care (e.g. demographic ageing,
loneliness, economic and financial circumstances, etc.). However, it needs to be
pointed out that the arising need for care is made special by the fact that it may
impose a social risk to the individual’s course of life in two directions—in respect
of the person in need of care on the one hand, and their relatives on the other hand.
With regard to the person in need of care, social risks appear at the intersection
of three factors, namely (a) the physical and emotional dependency of the person
needing care, (b) the financial burdens of solving his/her situation and (c) the
vulnerability of his/her human dignity.
As for the relatives, a social risk may arise as a result of the burden put on them
by the above-mentioned three factors on the one hand, and of the endeavour to
reconcile the provision of care with the difficulties they have to cope with in their
own lives (e.g. unemployment, sickness or raising a child as a single parent) on the
other.
Hungarian lawmakers clearly favour the responsibility of individuals,2 as due to
the historical development of law the regulations can no longer be maintained
today. At the same time, the legislative framework for the fulfilment of the
individuals’ obligations has not been laid down to date. After all, if the needs for
2
Pursuant to Paragraph (4) of Article XVI of the Fundamental Law of Hungary ‘Adult children
shall be obliged to look after their parents if they are in need.’ And pursuant to Paragraph (3) of
Article XVI of the Fundamental Law of Hungary ‘Parents shall be obligated to look after their
minor child’.
Table 2 Childcare (this system is largely differentiated according to the child’s age)
Insurance type benefits Normative type benefitsa Assistance type benefits
As a main rule, the benefit is granted to the parent
As a main rule, the benefit is granted to the parent (blood parent, adoptive parent, guardian, foster parent) As a main rule, the benefit is granted to the parent (blood
(blood parent, adoptive parent, guardian, foster parent) or to the person who provides care to the child parent, adoptive parent, guardian, foster parent) or to the
if he/she has periods of insurance (e.g. head of the social institution or grandparent, etc.) person who provides care to the child (e.g. grandparent)
Act LXXXIII of 1997 on the 1. Pregnancy- Act LXXXIV of 1998 on fam- 1. Birth grant Act III of 1993 on social 1. Regular social assis-
benefits of compulsory health confinement benefit ily support (t€ orvény a családok (anyasági administration and social tance (rendszeres
insurance (t€orvény a k€ otelező (terhességi- támogatásáról) támogatás) assistance (t€ orvény a szociális szociális segély)
egészségbiztosı́tás ellátásairól) gyermekágyi igazgatásról és szociális
segély) ellátásokról)
2. Childcare grant 2. Family allowance 2. Temporary social
(gyermekgondozási (családi pótlék) assistance (átmeneti
dı́j) segély)
3. Sickness benefit • Child-raising 3. Nursing grant (ápolási
for nursing a child benefit (nevelési dı́j)
(gyermekápolási ellátás)
táppénz)
4. Breast milk sup- • Schooling bene- 4. Household mainte-
ply (anyatejellátás)b fit (iskoláztatási nance subsidy
támogatás) (lakásfenntartási
támogatás)
3. Child home care 5. Providing meals
allowance (étkeztetés)
(gyermekgondozási
segély)
4. Child-raising 6. Family services
support (családsegı́tés)
(gyermeknevelési 7. Village caretaker and
támogatás) farm caretaker service
(falugondnoki,
tanyagondnoki
szolgáltatás)
(continued)
181
Table 2 (continued)
182
Insurance type benefits Normative type benefitsa Assistance type benefits

As a main rule, the benefit is granted to the parent
As a main rule, the benefit is granted to the parent (blood parent, adoptive parent, guardian, foster parent) As a main rule, the benefit is granted to the parent (blood
(blood parent, adoptive parent, guardian, foster parent) or to the person who provides care to the child parent, adoptive parent, guardian, foster parent) or to the
if he/she has periods of insurance (e.g. head of the social institution or grandparent, etc.) person who provides care to the child (e.g. grandparent)
Act LXXXI of 1997 on social 1. Temporary Ministry of health, social and Midwife and health Act XXXI of 1997 on the pro- 1. Primary child protec-
insurance pension (t€ orvény a widow(er)’s pen- family affairs decree visitor service tection of children and on the tion services
társadalombiztosı́tási sion (ideiglenes No. 49/2004 (V. 21.) (49/2004. (védőnői szolgálat) administration of Guardian- (alapellátások)
nyugellátásokról) ozvegyi nyugdı́j)
€ (V. 21.) ESzCsM. rendelet) ship (t€
orvény a gyermekek e.g. regular child protec-
védelméről és a gyámügyi tion allowance
igazgatásról) (rendszeres
gyermekvédelmi
kedvezmény)
2. Special care services
(szakellátások)
e.g. providing home/
lodging
(otthont nyújtó ellátás)
3. Official measures
e.g. placement in a familyc
(hatósági intézkedések
pl. családbafogadás)
Source: authors
a
It must be mentioned that in our opinion crèches and nursery schools, which are normative type benefits, can also be classified in the system of long-term care.
However, the Hungarian legal thinking—reflecting the aforementioned initial state of the issue of long-term care—classifies them among the institutions of
primary education instead of approaching them from the aspect of care
b
The detailed rules are laid down in the Ministry of Welfare Decree No. 47/1997 (XII. 17.) on the Supply of Breast Milk in the Framework of Compulsory
Health Insurance
c
The benefits provided for in Act XXXI of 1997 on the Protection of Children and on the Administration of Guardianship (t€ orvény a gyermekek védelméről és
a gyámügyi igazgatásról) are not going to be discussed in this paper because these benefits are connected with the protection of endangered children and not
expressly with childcare. Although child protection and childcare are separate, they are closely related, and for this reason we considered it necessary to list
child protection benefits in short
J. Hajdú and D. Lajkó
Table 3 Childcare
Insurance type benefits Normative type benefits Assistance type benefits
The child can receive the benefit under his/her own right (as a main rule after coming of age) provided that certain statutory conditions are satisfied
Act LXXXI of 1997 on social 1. Orphan’s Act LXXXIV of 1998 on 1. Schooling Act III of 1993 on social adminis- 1. Temporary
insurance pension (t€orvény a allowance family support (t€
orvény a benefit tration and social assistance social assistance
társadalombiztosı́tási (árvaellátás) családok támogatásáról) (iskoláztatási (t€
orvény a szociális igazgatásról és (átmeneti segély)
nyugellátásokról) támogatás) szociális ellátásokról
Source: authors
183
Table 4 Disabled care (this system is highly differentiated according to the age of the person living with disability, to his/her condition and to the time when
184
disability occurred)
As a main rule, the benefit is granted to the
parent (blood parent, adoptive parent,
guardian, foster parent) or to the person who As a main rule, the benefit is granted to the parent (blood
As a main rule, the benefit is granted to the provides care to the person living with parent, adoptive parent, guardian, foster parent) or to the
parent (blood parent, adoptive parent, guardian, disability (e.g. head of the social institution person who provides care to the person living with
foster parent) if he/she has periods of insurance or grandparent, etc.) disability
Act LXXXIII of 1997 on 1. Sickness benefit Act LXXXIV of 1998 1. Higher amount of Act III of 1993 on social 1. Temporary social assis-
the benefits of compul- for nursing a child on family support family allowance administration and social tance (átmeneti segély)
sory health insurance (gyermekápolási (t€
orvény a családok (családi pótlék) assistance (t€ orvény a
(t€orvény a k€otelező táppénz) támogatásáról) szociális igazgatásról és
egészségbiztosı́tás szociális ellátásokról)
ellátásairól)
Act LXXXI of 1997 on 1. Temporary • Child-raising 2. Nursing grant (ápolási
social insurance pension widow(er)‘s pen- benefit (nevelési dı́j)
(t€orvény a sion (ideiglenes ellátás)
társadalombiztosı́tási ozvegyi nyugdı́j)
€ • Schooling bene- 3. Household maintenance
nyugellátásokról) fit (iskoláztatási subsidy (lakásfenntartási
támogatás) támogatás)
2. Child home care 4. Day care (nappali
allowance ellátás)
(gyermekgondozási 5. Providing meals
segély) (étkeztetés)
6. Village caretaker and
farm caretaker service
(falugondnoki,
tanyagondnoki
szolgáltatás)
7. Domestic care and
domestic care due to signal
(házi segı́tségnyújtás,
illetve jelzőrendszeres
házi segı́tségnyújtás)
8.Social support service
(támogató szolgáltatás)
9. Home for persons with
disabilities (fogyatékos
személyek otthona)
10. Rehabilition institutes
for persons with disabil-
ities (rehabiltációs
intézmény fogyatékkal élő
személyek számára)
11. Care homes for per-
sons with disabilities
(fogyatékos személyek
gondozóháza)
Source: authors
185
Table 5 Disabled care (this system is highly differentiated according to the age of the person living with disability, to his/her condition and to the time when
186
disability occurred)
The person living with disability can receive the benefit under his/her own right provided that certain statutory conditions are satisfied
Act LXXXIII of 1997 on 1. Sickness Act LXXXIV of 1998 on 1. Child-raising ben- Act III of 1993 on social 1. Regular social assis-
the benefits of compul- benefit family support (t€ orvény a efit (nevelési ellátás) administration and social tance (rendszeres
sory health insurance (táppénz) családok támogatásáról) assistance (t€ orvény a szociális segély)
(t€orvény a k€otelező 2. Work acci- szociális igazgatásról és 2. Temporary social
egészségbiztosı́tás dent annuity szociális ellátásokról assistance (átmeneti
ellátásairól) (baleseti segély)
járadék)
3. Work acci- 3. Household mainte-
dent sickness nance subsidy
benefit (lakásfenntartási
(baleseti támogatás)
táppénz)
Act CXCI of 2011 on 1. Rehabilita- Act XXVI of 1998 on 1. Financial support 4. Day care (nappali
benefits for persons with tion benefit provision of the rights of for severely disabled ellátás)
changed working capacity (rehabilitációs persons living with dis- persons
and amendments of cer- ellátás) ability and their equality (fogyatékossági
tain acts (t€orvény a 2. Disability of opportunity támogatás) 5. Providing meals
megváltozott benefit (a fogyatékos személyek (étkeztetés)
munkaképességűek (rokkantsági jogairól és 6. Village caretaker and
ellátásairól) ellátás) esélyegyenlőségük farm caretaker service
biztosı́tásáról szóló 1998. (falugondnoki,
évi XXVI. t€ orvény) tanyagondnoki
szolgáltatás)
7. Domestic care and
domestic care due to sig-
nal (házi segı́tségnyújtás,
illetve jelzőrendszeres
házi segı́tségnyújtás)
8. Social support service
(támogató szolgáltatás)
9. Home for persons with
disabilities (fogyatékos
személyek otthona)
10. Rehabilition institutes
for persons with disabil-
ities (rehabiltációs
intézmény fogyatékkal
élő személyek számára)
11. Care homes for per-
sons with disabilities
(fogyatékos személyek
gondozóháza)
12. Public health care aid
(k€ozgyógyellátás)
Source: authors
187
Table 6 Elderly care

Normative
type
Insurance type benefits benefits Assistance type benefits
It can be claimed by the elderly person’s relative
Nothing Nothing Act III of 1993 on 1. Nursing grant
social administration (ápolási dı́j)
and social assistance
(t€
orvény a szociális
igazgatásról és
szociális ellátásokról
Under his/her own right
Act LXXXIII of 1. Home Nothing Act III of 1993 on 1. Temporary social
1997 on the bene- medical social administration assistance (átmeneti
fits of compulsory care and social assistance segély)
health insurance (otthoni (t€
orvény a szociális
(t€orvény a k€otelező szakápolás)a igazgatásról és
egészségbiztosı́tás 2. Hospice szociális ellátásokról 2. Household main-
ellátásairól) service at tenance subsidy
home (lakásfenntartási
(otthoni támogatás)
hospice) 3. Public health care
aid
(k€ozgyógyellátás)
4. Domestic care
and domestic care
due to signal (házi
segı́tségnyújtás,
illetve
jelzőrendszeres házi
segı́tségnyújtás)
5. Day care (nappali
ellátás)
6. Providing meals
(étkeztetés)
7. Village caretaker
and farm caretaker
service
(falugondnoki,
tanyagondnoki
szolgáltatás)
8. Care home for the
elderly (időskorúak
gondozóháza)
9. Home for the
elderly (idősek
otthona)
Source: authors
a
Ministry of Welfare Decree No. 20/1996 (VII. 26.) on Home Medical Care contains the details of
home medical care and hospice service at home
care are to be satisfied from one’s own resources, this can lead to the growing
impoverishment of either the person in need of care or his/her relative. On the other
hand, the satisfaction of the need for care involves not only financial but also
non-financial factors, meaning that if these non-financial factors (attention, com-
munication, etc.) are insufficient or lacking, the social exclusion of the person in
need of care will be further intensified.
The social risk of having and taking caring of children was recognized early in
time. This is the reason why, as regards the social risk of long-term care, the care
system for children is the most developed benefit system operated by the State. The
legislation on childcare also specifies as a purpose the compensation for the extra
burden borne by persons who have and take care of children (- a task recognized by
society -) in the form of cash benefits, benefits in kind and also through particular
institutional structures.
However, the situation is different with respect to care provided to persons living
with disabilities and to old people.
Initially, the social risk of disability focussed on the reduced working capacity of
the given person, without considering this person’s need for care. Therefore, the
primary aim of the current regulations is to compensate for the reduced working
capacity and to restore or maintain the person’s working capacity. Thus, little
attention is paid to the need for care of these persons and if so, it is realized in
the framework of the assistance type system.
Finally, elderly care is an absolutely new problem, which arose from the
increasing number of old people and from the changing labour market and the
rearrangement of family functions. In Hungary, the problem of care provision for
the elderly was, in earlier times, resolved within the family.
This can be traced back to several causes:
• having children meant having labour force in the family on the one hand, and
persons to provide care to the parents later on the other hand,;
• parents would ensure the satisfaction of their future needs for care by exercising
control over the resources;
• as a result of the interdependence of the persons living together in a community,
the community had the power to force the child to provide care;
• the elderly people’s life experience awarded them deep respect as concerns
handing down knowledge from generation to generation:
• other alternatives of elderly care were non-existent.
The bases of the legal regulation of elderly care are constituted by social,
political and economic processes which brought about changes in respect of the
above-listed causes, such as—(a) loss of economic dominance,3 (b) increased

mobility of young people,4 and (c) changes in values.5
With respect to the roots of the legal regulation of elderly care, it can generally
be stated that
• the initial legal regulations responding to problems of elderly care were made in
line with individual problem management as required by private interests. As a
result, these regulations are embodied within the field of private law, particularly
in civil law norms, thereby quasi legitimizing the private satisfaction of needs in
the field of elderly care, and that
• initially, State provisions for providing care were meant to remedy poverty.
Therefore they did not respond to needs for care arising from dependency in
old age.
The instruments of current legal solutions were predetermined by the evolution
of Hungarian history. It is exactly this legal situation which has made the Hungarian
conditions somewhat special, for elderly care is left to be dealt with by civil law as
the primary source of individual problem management on the one side, and by
social law as an assistance-type State response to elderly care on the other side.
In sum, it can be stated that the system of care provision for persons living with
disabilities and for elderly people cannot be regarded as very complex and homo-
geneous. State benefits related to care for persons living with disabilities and for
elderly people can offer a solution to the problem of long-term care only as regards
the effect, but does not address the intent of the legislators. On the other hand, the
3
The fundamental changes were rooted in the Industrial Revolution and rapid capitalization
following the Compromise (1867). In Hungary, people mainly worked in agriculture. However,
the development of agrarian settlements slowed down with industrialization. The appearance of
factories and industry brought a radical and sudden change in the earlier way of life of the peasants,
the structure of the families and the division of labour within the family (Andorka 2006, p. 669).
Later the effect of this process was further intensified by the so-called capitalist economy and by
the so-called socialist economy (Andorka 2006, p. 665) through the collectivization of lands,
forced industrialization, withdrawal of State investments in agriculture and preference for urban-
ization (Andorka 2006, p. 260, p. 685). As a result, the elderly people’s control over the economic
resources with which they could ‘provide for’ their future care ceased gradually, albeit drastically.
Ensuing from the superior-subordinate relationship between parents and children financial depen-
dence continued to exist, but parents were losing their powerful economic dominance.
4
Young people starting their independent lives left their homes in the hope of finding a job and
having a better life, and thus the physical distance between parents and children increased. As a
result of this physical distance and the general spreading of the family model with two breadwin-
ners, there was smaller and smaller possibility for the children to provide care to their elderly
parents in the parents’ home. (Cseh-Szombathy 1971, p. 163).
5
Another reason why previous models of elderly care could no longer be maintained was that
young people’s new type of work and learning as well as the immense development in technology
further deepened the—essentially generational—gap between people staying in the village and
those living in a city. This contributed to elderly people losing their esteem which they had once
earned through their knowledge and worldly wisdom, because the greater part of their knowledge
had become almost worthless for the new working-age generation in the new life situations.
legislative aim of the benefits related to childcare is to help solve the problem of
care provision. This also becomes clear from the fact that childcare-related benefits
can be found in all the three types—insurance, normative and assistance type—of
the social system operated by the State.
2 Specific Systems
In this chapter two issues shall be presented for the case of Hungary—(1) the
concept of long-term care and (2) the benefit system.
2.1 Hungarian Definition of Long-Term Care
The concept of long-term care is used only in jurisprudence. Effective law does not
use this term and does not define either the concept of care or the meaning of long-
term in this way. The only conclusions can be drawn from the legal regulations in
force, and these conclusions are frequently contradictory.
In the following, the concept of care and of long-term shall be presented from a
dogmatic approach.
2.1.1 Concept of Care
We think that during the provision of care physical needs are satisfied (for example
hunger, thirst, hygienic needs, etc.), while nursing is based on changes in health/
sickness and its specific aim is to satisfy medical needs related to being sick (for
example, alleviation of pain, changing bandages, giving injections, etc.). Naturally,
the two concepts are closely associated with each other because the improvement or
preservation of a person’s state of health is necessarily in close connection with the
satisfaction of his or her physical needs as best as possible. So it can be said that
each nursing activity involves care, but a care activity does not involve nursing.
In line with the above we can state that there are life situations in which the given
person, as a result of an illness (or possibly an accident), needs nursing, and
naturally, as part of this some extent of care is necessitated by his/her state. Thus,
as a main rule, care and nursing are essentially not separated when an average,
vigorous person is involved who has appropriate financial resources, because this
person is incapable of caring for himself/herself only when an illness or an accident
prevents him/her from satisfying his/her physiological needs. Thus, the two con-
cepts are to be distinguished in cases where the given person cannot satisfy his/her
physiological needs in a so-called “normal” life situation. In these situations the
need for care arises without an illness having developed or an accident having
happened.
There is only one crystal clear example of this in our lives—our childhood. In the
first few years of their lives, children are in absolute need of physical care. Then, as
they get older, their physical dependency gradually decreases and then ceases.
However, this kind of physical dependency can also arise for elderly people or
for persons living with disabilities. What these protected persons need is not real
nursing but help to satisfy their basic physical needs (for example, meals, shopping,
bathing, help with arranging official matters or buying medicines, etc.).
In our opinion childhood, ageing or even disabilities of a stable nature that do not
require nursing cannot be regarded as an illness. The logical conclusion ensuing
from this theorem is that in the absence of an illness nursing is ruled out
conceptually.
Conceptual clarity is hindered in cases in which the person in need of care also
needs nursing because of an illness or accident, as his/her need for care continues
during this time. Thus, the question arises as to what is the dividing line between
illness and health—beyond which care becomes part of nursing. This dilemma may
be relevant when examining the care responsibility.
Summary Our study focuses on needs for care and their satisfaction, which can be
relatively clearly distinguished from nursing and health care through institutions.
Thus, jurisprudence approaches the issue from the side of dependency. As the
individual concept of care focuses on satisfying the physiological needs and not on
the illness, this state of dependency will necessarily not qualify as an illness.
2.1.2 Concept of “Long-Term”
In our opinion, when examining long-term care, the emphasis is not on “long-term”
but on the dependency arising from age and/or disability. Benefits should be
specified according to the type of dependency instead of its duration. All the
more so since the existence of the need for care may vary from individual to
individual. It is only in the case of infants and young children that some general
period of care can be determined when predicting the duration of need.
At the same time a situation may also arise when this state is intensified
temporarily, with an ad hoc nature. Therefore, if long-term is emphasized, situa-
tions in which physiological needs have to be satisfied temporarily will be
excluded. This would immediately lead to a life situation for which the system
based on this concept could not provide benefits.6
6
Ever since the Beveridge plan (Vid 1943, p. 46) and International Labour Organisation Conven-
tion No. 102 concerning Minimum Standards of Social Security (28 June 1952), social law
dogmatic thinking has strived to manage all kinds of social risks for everyone. This effort can
be noticed in all the international documents on social law adopted since then. For instance, the
Preamble of the International Covenant on Economic, Social and Cultural Rights of the United
Nations Organization (16 December 1966) lays down that “the ideal of free human beings
enjoying freedom from fear and want can only be achieved if conditions are created whereby
everyone may enjoy his economic, social and cultural rights [. . .].”
Pursuant to the above, the dogmatic concept of long-term care can be summa-
rized as follows:
Long-term care is the complex entirety of mechanisms associated with
• forming and/or maintaining the capacity of self care or
• compensating for partial or total lack of the capacity of self care, resulting from
child-hood, old age and/or disability,
• providing for or in the interest of a person in need,
• the purpose of helping him/her avoid the evolving need of care, or
• if need of care is evolved, helping him/her stay in his/her home7 or in home-like
circumstances for as long as possible.8
2.2 System of Benefits
In the following, the benefits which make care more or less possible are summa-
rized, and the ones which the person in need of care is eligible for are shown
separately.
As regards eligibility for benefits, we can generally say that as a main rule,
persons providing care to children can claim benefits related to childcare. When the
child comes of age, he/she may receive the benefit under his/her own right,
provided that certain statutory conditions are satisfied.
In the case of elderly persons, the great majority of benefits are granted to the
elderly person even if another person makes the care arrangements due to the
elderly person’s dementia.
While childcare or elderly care may constitute a relatively closed system, this is
not true of the benefit system for people living with disabilities, as it includes both
children and elderly people. Thus, in the case of persons living with disabilities,
eligibility can be regarded as a combination of the previous two. If the person living
with disability is a child, the benefits are granted to the person who provides care to
the latter, and when the child comes of age or becomes disabled when already of
age, he/she will be entitled to the benefits even if somebody else acts on his/her
behalf.
The special feature of the benefit system for persons living with disabilities is not
only the receiving of benefits but also the overlapping of benefits. If the person
living with disability is a child, the benefits payable in the system of childcare may
also be granted to him/her, while an elderly person living with disability is to be
7
This conceptual definition is in harmony with the requirement of the European Commission,
according to which solutions are needed which “make it possible for people to stay in their homes
for as long as possible.” Communication from the Commission to the Council, the European
Parliament and the Committee of the Regions—Proposal for the Joint Report on Social Protection
and Social Inclusion 2007, COM(2007)13.
8
Gáthy and Széman (1998), p. 6.
paid benefits listed in the system of elderly care. Therefore, in the description of the
present system of benefits only those benefits are mentioned.
• which are paid specifically because of disability, or
• which are granted to a higher amount or for a longer period of care as a result of
disability, even though eligibility is acquired in the other two systems.
3 Details of the Provision of Benefits
In the following, the benefits listed in the above tables shall be described briefly.
3.1 General Benefits for Various Groups
3.1.1 Domestic Care and Domestic Care Due to Signal (Házi

segı́tségnyújtás és Jelzőrendszeres házi segı́tségnyújtás)
Conceptual Definition Domestic care is a basic service in the framework of which

the person receiving the service is provided with the care necessary due to his/her
health and social conditions for leading an independent life in his/her own home
environment.9 Domestic care due to signal is a special form of domestic care. It is a
basic service which not only helps to maintain an independent life but also to avert
emergencies with the aid of an emergency signalling device.10
Advantages and Disadvantages in Respect of Long-Term Care We shall examine
the advantages and disadvantages of domestic care and domestic care due to signal
from two aspects—(a) scope of eligible persons, and (b) capacity of care.
(a) Scope of eligible persons. The same can be said about the scope of eligible
persons as for the other social supports based on need. However, a relatively
wider scope of persons can be eligible than in the case of the previous supports
because here it is mainly the person’s health condition which justifies
eligibility.
(b) Capacity of care. Both services can be considered of basic importance in the
risk management of elderly care. However, actual access to these services is
9
Paragraph (1) of Section 63 of Act III of 1993 on Social Administration and Social Assistance
(t€orvény a szociális igazgatásról és szociális ellátásokról).
10
(t€orvény a szociális igazgatásról és szociális ellátásokról).
restricted by the limited capacity of organized domestic care and domestic care
due to signal. The smaller a settlement is, the smaller is the proportion of
applicants who can receive it.11 This is the case in spite of the fact that pursuant
to Act III of 1993 on Social Administration and Social Assistance (t€orvény a
szociális igazgatásról és szociális ellátásokról)12 it is mandatory for local
governments to organize domestic care and, in settlements with more than
10,000 permanent residents, domestic care due to signal, too.
3.1.2 Day Care (Nappali ellátás)
Conceptual Definition Day care is a basic service in the framework of which

persons receiving this care can stay in a facility during the day, form social contacts,
satisfy their basic needs of hygiene and have meals. It has a complex scope of
eligibility, encompassing five groups of persons—namely (a) homeless persons,
(b) elderly persons, (c) psychiatric patients over 18 years of age, (d) addicts over
18 years of age, and (e) persons living with disabilities and autistic persons over
3 years of age.13
Advantages and Disadvantages in Respect of Long-Term Care The advantages and
disadvantages of day care with regard to long-term care shall be examined from two
aspects—(a) access possibilities, and (b) meeting differentiated needs.
(a) Access possibilities. Day care has limited access possibilities because the
number of day care facilities is relatively low compared to the number of
elderly people, and local governments are obliged to organize this service
only in settlements with more than 3000 permanent residents.
(b) Meeting differentiated needs. It can be stated that day care is not suitable for
meeting elderly people’s differentiated needs—which result from their lives,
qualifications or personalities–, it can only be expected to satisfy the most basic
physiological needs and the need for social contacts.
11
As Bácskay said, “one can observe the effect of the urbanization slope, that is the fewer residents
a settlement has, the more insufficient services are.” Bácskay (2005), p. 35.
12
Section 86 of Act III of 1993 on Social Administration and Social Assistance (t€ orvény a szociális
igazgatásról és szociális ellátásokról).
13
Paragraph (1) of Section 65/F of Act III of 1993 on Social Administration and Social Assistance
(t€
orvény a szociális igazgatásról és szociális ellátásokról).
3.1.3 Family Services (Családsegı́tés)
Conceptual Definition Family service is a service provided to persons or families

who need help because of social or mental hygiene problems or other crises in order
to prevent the causes leading to such problems, to eliminate the crisis and to
preserve their life management ability.14
Family service includes, for example, social life management and mental hygienic
counselling, organization of access to benefits in cash, benefits in kind and social
services for persons with financial difficulties, family care and, as part of it, help to
solve dysfunctions and conflicts within the family.15
3.1.4 Home Medical Care (Otthoni szakápolás)
Conceptual Definition Home medical care can be defined as an activity which is

ordered by the treating physician and is performed by a qualified nurse in the home
or place of residence of the person eligible for health services,16 the purpose of
which is, on the one hand, to provide humane and professional care tailored to the
patient’s needs in home circumstances, and on the other hand to reduce the number
or duration of hospital treatments. Home medical care can be ordered if the health
condition of the insured person would necessitate nursing in hospital but, where
possible, it can be replaced by treatment provided as part of home medical care.
Advantages and Disadvantages in Respect of Long-Term Care Two factors should
be highlighted concerning home medical care:—(a) the number of ordered care
cases and (b) the number of care providers.
(a) Number of ordered care cases. One disadvantage of ordered home medical care
lies in its limited capacities. No more than 14 visits can be ordered at a time.
This can be repeated on three further occasions within a calendar year after a
repeated medical examination, on a new ordering form. If the patient’s condi-
tion necessitates care in excess of this, the physician—with the agreement of the
supervising chief physician of the health insurance fund—can order more visits
according to the patient’s needs if the care provider has the necessary capacity
for this.
(b) Number of care providers. Home medical care is provided predominantly by
profit-oriented private service providers—deposit companies, limited liability
companies—and to a smaller extent by foundations and in some places by local
14
(t€
15
(t€
16
Paragraph (1) of Article 1 of the Ministry of Welfare Decree No. 20/1996 (VII. 26.) on Home
Medical Care.
government and church services, too, but one of the greatest problems is that
this service is not available in the whole country.17
3.1.5 Household Maintenance Subsidy (Lakásfenntartási támogatás)
Conceptual Definition Household maintenance subsidy is a cash benefit paid to

socially needy persons and families to help cover the regular costs of maintaining
their dwelling or some other premises used as a dwelling in which they live.18
Advantages and Disadvantages in Respect of Long-Term Care Two aspects shall
be highlighted in connection with household maintenance subsidy—(a) its ability to
retain the dwelling, and (b) the amount.
(a) Ability to retain the dwelling. A great advantage of the support is that it lessens
the burden of the frequently high housing costs, and thus it reduces the number
of people who lose their home and become homeless because of the costs of
household maintenance. At the same time, however, this is its only relation to
long-term care. The greatest disadvantage of the support in respect of long-term
care is that it only helps to retain and maintain the premises which serve as the
primary condition of home care, so it actually belongs to the system of care
because of its effect. It is true, however, that the dwelling can be used as a
solution for the management of the need for care, for instance to conclude a
support contract.
(b) The amount. The disadvantage of household maintenance subsidy is its rela-
tively low amount—which is dependent on the old-age pension minimum.19
3.1.6 Public Health Care Aid (K€ozgyógyellátás)
Conceptual Definition Public health care aid is a benefit in kind which ‘is awarded
to the person in need of contributing to the costs of preserving and restoring his/her
health.’20 Eligibility for public health care aid can be certified with the aid of an
17
Haimann (2006). In 2006, 315 financed service providers operated in the country and they cared
for 45,000 patients, Balogh et al. (2008), p. 16.
18
(t€
19
Paragraphs (6)–(7) and (9) of Section 38 of Act III of 1993 on Social Administration and Social
Assistance (t€orvény a szociális igazgatásról és szociális ellátásokról). The prevailing minimum
amount of old-age pension (commonly called old-age pension minimum) is determined in
Section 11 of Government Decree No. 168/1997 (X. 6.) on the implementation of Act LXXXI
of 1997 on Social Security Pension Benefits. Pursuant to this regulation, it amounted to HUF
28,500, approximately € 97 in 2013.
20
(t€
official certificate issued by the health insurance fund on the basis of the town
clerk’s decision on eligibility.21 The person who has a certificate of public health
care aid is entitled to have access to medical services supported by social security—
medicines, medical aids and medical services.22
Advantages and Disadvantages in Respect of Long-Term Care We shall focus on
two aspects—(a) scope of eligible persons and (b) limited amount.
(a) Scope of eligible persons. A disadvantage in respect of the scope of eligible
persons is that, according to the principle of need adopted in assistance type
social systems, a certificate of public health care aid can be issued, as a rule, to
needy persons. Thus, it cannot cover the total number of persons affected.
(b) Limited amount. Eligibility for public health care aid provides medical services
free of charge up to a certain limit. Pursuant to the Social Act, medical aids and
medical services are available free of charge up to the price accepted as the
basis of public financing, while medicines are free of charge within the personal
limit for medicines. The personal limit for medicines consists of two parts—
individual and occasional limit.23 In 2013, the monthly amount of the individ-
ual limit amounted to HUF 12,000, while that of the occasional limit was HUF
6000.24
3.1.7 Provision of Meals (Étkeztetés)
Conceptual Definition The provision of meals is a basic service in the framework

of which socially needy persons shall receive warm meals at least once a day if
these persons are unable to provide meals for themselves or for their dependents
temporarily or permanently, particularly because of their (a) age, (b) state of health,
(c) disabilities, psychiatric disease, (d) addiction or (e) being homeless.25
be discussed in this respect—(a) satisfaction of the need, (b) organization of the
service.
21
Paragraph (1) of Section 50/C of Act III of 1993 on Social Administration and Social Assistance
(t€
22
(t€
23
Paragraphs (3)–(4) of Section 49 of Act III of 1993 on Social Administration and Social
Assistance (t€orvény a szociális igazgatásról és szociális ellátásokról).
24
Section 59 of Act CCIV of 2012 on the 2013 National Budget of Hungary. Approximately €
42.33 and € 21.16.
25
(t€
(a) Satisfaction of the need. An advantage to be pointed out is that providing meals
satisfies not only the person’s physiological needs, but—especially if the person
does not request that the meal be delivered to his/her home—also the need for
company, especially in smaller settlements with close communities.
(b) Organization of the service. A disadvantage is—just as in the case of domestic
care and domestic care due to signal—that capacity is limited. In addition, some
of the local governments lack the public institutions (e.g. school or nursery
school) which have a great role in creating the conditions for providing meals,
and this may further hinder the organization of the service.
3.1.8 Regular Social Assistance (Rendszeres szociális segély)
The Conditions of Eligibility for this Benefit The person disadvantaged on the
labour market who on the first day of eligibility for the benefit
– qualifies as a person with a health impairment, or
– will reach the retirement age applicable to him/her within 5 years, or
– takes care of a child under 14 years of age (provided that another person does not
receive child home care allowance, child-raising support, childcare grant or
pregnancy-confinement benefit in respect of a child living in the family, and
the care of the child is not provided by a day care institution).26
The condition of eligibility is that the family’s monthly income per consumption
unit is not higher than 90% of the prevailing minimum amount of old-age pension27
and that the family has no assets.
The Amount of the Benefit The monthly amount of regular social assistance is the
difference between the amount of the family income ceiling and the total monthly
income of the eligible person’s family.28
26
(t€
27
The prevailing minimum amount of old-age pension (commonly called old-age pension mini-
mum) is determined in Section 11 of Government Decree No. 168/1997 (X. 6.) on the implemen-
tation of Act LXXXI of 1997 on Social Security Pension Benefits. Pursuant to this regulation, the
amount is HUF 28,500, approximately € 97 in 2013. Ninety percent of the minimum old-age
pension is HUF 25,650, approximately € 86 in 2013.
28
(t€
3.1.9 Sickness Benefit (Táppénz)
The Conditions of Eligibility for this Benefit Compulsory health insurance

scheme—within this sickness benefit—for the active population (employees and
self-employed) with earnings-related benefits. Incapacity for work certified by a
doctor.
The Amount of the Benefit29 The main rule for defining the amount of this benefit is
to set it at 60% of the daily average gross earnings. But during inpatient treatment or
in case the employment period is shorter than 2 years, the amount of this benefits
shall be 50% of the daily average gross earnings. The amount of the benefit depends
upon the length of the previous insurance period. There is a ceiling of this benefit –
the amount of the benefit per day cannot exceed 1/30 of 200% of the minimum
wage. This benefit is paid for 1 year maximum.
3.2 Social Support Service (Támogat

o szolgáltatás)
Conceptual Definition The aim of the social support service is to provide care to
persons living with disabilities in their home environment, particularly to help them
get access to public services outside their homes and to give them special help
within their homes so that they can lead an independent life. Depending on the
nature of the disability, the tasks of the social support service include, for example,
operating a special personal transport service, providing access to sign language
interpretation, etc.30
3.2.1 Temporary Social Assistance (Átmeneti segély)
Conceptual Definition Temporary social assistance is a cash benefit paid

depending on social need; it ‘provides help to persons who find themselves in an
extraordinary life situation endangering subsistence, or who struggle with tempo-
rary or permanent problems of subsistence’.31 The scope of persons eligible for
temporary assistance is determined by the body of representatives of the local
government and is laid down in a municipal decree.
29
Paragraph (8) of Section 48 of Act LXXXIII of 1997 on the Benefits of Compulsory Health
Insurance (t€orvény a k€otelező egészségbiztosı́tás ellátásairól).
30
Paragraph (1)–(3) of Section 65/C of Act III of 1993 on Social Administration and Social
31
(t€
Advantages and Disadvantages in Respect of Long-Term Care We shall point out

four aspects here—(a) the duration of the payment of the assistance, (b) the scope of
eligibility for the assistance, (c) the amount of the assistance, and (d) the awarding
of the costs of care.
(a) Duration of the payment of the assistance. As a rule, this assistance—as
indicated by its name and by its above conceptual definition—is only a tempo-
rary means of help. Thus, it can by no means solve the problem of costs incurred
during a prolonged period of care. However, our opinion is that the regulation
of the Social Act—namely that the assistance shall be awarded if the claimant
cannot provide for his/her own or for his/her family’s subsistence in any other
way32—also means that temporary social assistance is the ‘jolly joker’ in the
assistance system. In other words, if the assistance system is the ultima ratio of
social law, temporary social assistance is the ultima ratio of the assistance
system.
(b) Scope of eligibility for the assistance. A disadvantage in respect of the scope of
eligibility for temporary assistance is that it is awarded by the local govern-
ments to a relatively narrow circle. The reason for this is that ‘in the case of
temporary social assistance the per capita maximum family income to be
considered in awarding the assistance shall be regulated in the municipal decree
in such a way that it shall not be lower than the prevailing minimum amount of
old-age pension,33 or 150% thereof in the case of a person living alone.’ Local
governments—for reasons of limited financial resources—usually adopt this
statutory regulation and do not provide for a wider scope of eligibility.
(c) Amount of the assistance. As it is an assistance type of benefit, its amount is
low, so it does not offer a real solution as compared to the market prices of
self care.
(d) Costs of care. In respect of the costs of care the question arises to what extent
the costs of individual care are to be regarded as ‘costs of subsistence’, and even
if they are, it is doubtful whether the local governments can assume these
expenses for even one local resident.
3.2.2 Temporary Widow(er)’s Pension (Ideiglenes €ozvegyi nyugdı́j)
The Conditions of Eligibility for this Benefit This benefit is financed by contribu-
tions covering the active population (employees and self-employed) with benefits to
32
(t€
33
tation of Act LXXXI of 1997 on Social Security Pension Benefits. Pursuant to this regulation, it
amounted to HUF 28,500, approximately € 97 in 2013.
survivors depending on the pension to which the deceased person was or would
have been entitled at the time of death.
Temporary widow(er)’s pension is granted for at least 1 year or for a maximum of
3 years if the widow(er) takes care of a disabled orphan.
Temporary widow(er)’s pension is converted into permanent pension if the
spouse
• is above his/her relevant retirement age, or
• is considered to be a person with changed working capacity, or
• is left with at least two minor children or a disabled child (who are entitled to
orphan’s benefit) he/she had with the deceased.34
The Amount of the Benefit Sixty percent of the old-age pension (€oregségi nyugdı́j),
which the deceased person was or would have been entitled to at the time of his/her
death.35
3.2.3 Village Caretaker and Farm Caretaker Service (Falugondnoki és

tanyagondnoki szolgáltatás)
Conceptual Definition Pursuant to the Social Act ‘the village caretaker and farm
caretaker service is a basic service the purpose of which is to remedy the drawbacks
resulting from the lack of institutions in small villages, outer and other inner areas
and isolated farms, to provide access to the services, public services and certain
basic services which help to satisfy fundamental needs, and to help to fulfil
individual and community needs.’36
be focussed on when considering the advantages and disadvantages of the village
caretaker and farm caretaker service—(a) the nature of the activity and (b) the
organization of the service.
(a) Nature of the activity. Concerning the nature of the activity an advantage is that
this service may help people to have access to other social services, such as the
provision of meals, domestic care or domestic care due to signal. Any effect
caused by the inefficiency of these services can somewhat be alleviated by the
village caretaker (farm caretaker) service. However, the disadvantage of the
service is that, being a complex activity, it does not focus on elderly people or
persons with disabilities only. Village or farm caretakers are the “factotums” of
34
Section 47 of Act LXXXI of 1997 on Social Insurance Pension (t€ orvény a társadalombiztosı́tási
nyugellátásokról).
35
Paragraph (1) of Section 50 of Act LXXXI of 1997 on Social Insurance Pension (t€ orvény a
társadalombiztosı́tási nyugellátásokról).
36
(t€
the settlement, so caring for and helping the elderly or the disabled is only one
of their many tasks. The complex nature of this service makes it rather an
auxiliary than an efficient solution to the problem of long-term care.
(b) Organization of the service. The greatest disadvantage in this respect is that the
service operates in only about every second settlement with fewer than 500 res-
idents,37 although it is these that are the most severely affected. At the same
time it is true that the smaller a settlement is, the more probable it is that needy
persons will be cared for. Health visitors or nurses make regular visits, or in
winter communal service workers can help elderly people or persons with
disabilities, for example, by doing their shopping or talking with them, etc.
However, this does not belong to their actual scope of duties, and in a consti-
tutional state it is highly irresponsible to expect the statutory obligation of the
local government to be fulfilled out of humanity.
1. Work Accident Annuity (Baleseti járadék)

The Conditions of Eligibility for this Benefit The extent of the damage to a person’s
health is to exceed 13%.
The Amount of the Benefit The level of the benefit is expressed as a percentage of
monthly average earnings38 and determined by the degree of the extent of the
damage to a person’s health, hereinafter:
Degree of the extent of damage to Percentage of monthly average

Level health (%) earnings (%)
Level 1 14–20 8
Level 2 21–28 10
Level 3 29–39 15
Level 4 Over 39 30
Source: authors
2. Work Accident Sickness Benefit (Baleseti táppénz)

The Conditions of Eligibility for this Benefit Payable—irrespective of the preced-
ing period of insurance and any previous payments of sick pay—for 1 year with the
possibility of an extension for a further year.
The Amount of the Benefit Hundred percent of the average income forming the
basis of Sickness Benefit (Táppénz) and 90% of that basis in case of injury
sustained during travel between home and work.
37
Bácskay (2005), p. 33.
38
The gross monthly average earning upon which contributions were paid over the previous
calendar year before the work accident.
3.3 Specific Benefits for Child Care and Families
3.3.1 Birth Grant (Anyasági támogatás)
Conceptual Definition A one-off contribution to bearing the initial costs of having

children.
The Conditions of Eligibility for this Benefit Beneficiaries are women who give
birth, adoptive parents, guardians or the father in case of the death of the mother.
Women who give birth shall be beneficiaries—after delivery—on completion of at
least four prenatal medical examinations (except in cases of premature birth,
because in this case only one prenatal medical examination is sufficient).
Adoptive parents or guardians shall be beneficiaries with the res iudicata judge-
ment on adoption or on guardianship within 6 months of confinement.39
The Amount of the Benefit This benefit is a one-off payment. The amount of this
payment—per child—is
– Two hundred and twenty-five percent of the minimum old-age pension (€oregségi
nyugdı́j-minimum)40 or
– Three hundred percent of the minimum old-age pension41 in case of twins.42
Advantages and Disadvantages in Respect of Long-Term Care Having children
initially involves a great financial burden within a short period of time, so a definite
advantage of this benefit is its normative nature. At the same time, the beneficiary is
not accountable as to what this sum has been spent on.
3.3.2 Breast Milk Supply (Anyatejellátás)
The Conditions of Eligibility for this Benefit Breast milk supply is a special health
service which can be received in the framework of health insurance.
Breast milk supply is granted to the newborn or to the infant if it is justified due to
premature birth, low weight or eating disorders or if the mother is not able to feed
the baby with her own milk (e.g. she has an infectious disease or her mental state
makes breast-feeding impossible, etc.)43
39
Section 29 of Act LXXXIV of 1998 on Family Support (a családok támogatásáról).
40
tation of Act LXXXI of 1997 on Social Security Pension Benefits. The minimum old-age pension
is HUF 28,500, approximately € 97. 225% of the minimum old-age pension is HUF 64,125,
approximately € 218 in 2013.
41
Three hundred percent of the minimum old-age pension is HUF 85,500, approximately €
290 in 2013.
42
43
Sections 1–2 of the Ministry of Welfare Decree No. 47/1997 (XII. 17.) on the Supply of Breast
Milk in the Framework of Compulsory Health Insurance.
Advantages and Disadvantages in Respect of Long-Term Care The advantage of

this benefit is that it helps to satisfy the child’s physiological (nutritional) needs. At
the same time, being an insurance type benefit, it does not fully cover the group of
persons to be protected.
3.3.3 Childcare Grant (Gyermekgondozási dı́j)
The Conditions of Eligibility for this Benefit At least 365 days of insurance during
the last 2 years before delivery, the child must live with the claimant’s family, and
one of the parents is obliged to stay at home and take care of the child. The benefit is
paid after the expiry of the pregnancy-confinement benefit (Terhességi-
gyermekágyi segély) until the child reaches 2 years of age, but no longer than the
insurance period of the claimant.44
The Amount of this Benefit45 Seventy percent of the daily average gross earnings of
the previous year. Maximum 70% of double the minimum wage.46
Advantages and Disadvantages in Respect of Long-Term Care Being an insurance
type benefit, it provides help only to persons who have the necessary periods of
insurance. Its disadvantage is that it has a maximum amount in spite of the fact that
there is no limit to contribution payment.
3.3.4 Child Home Care Allowance (Gyermekgondozási segély)
The Conditions of Eligibility for this Benefit For parents who take care of their
children aged under 3 years—aged under ten for disabled children—or for grand-
parents who take care of their grandchildren older than 1 year in the household of
the parent. In case of twins, the allowance is paid until the children reach the
compulsory schooling age—usually 6 years.47
Parents who have a child under 1 year of age cannot pursue a gainful activity, while
above 1 year of age the parent can pursue a gainful activity up to 30 h a week, or
work from home without any time restriction. A grandparent of a child under
3 years of age cannot pursue a gainful activity, while with a view to children
above 3 years, the beneficiary can pursue a gainful activity up to 30 h a week, or
work from home without any time restriction.48
44
Paragraph (1) of Section 42/A of the Act LXXXIII of 1997 on the Benefits of Compulsory Health
Insurance (t€orvény a k€
otelező egészségbiztosı́tás ellátásairól).
45
Paragraph (1) of Section 42/D of the Act LXXXIII of 1997 on the Benefits of Compulsory Health
46
According to Government Decree No. 390/2012 (XII. 20.) on Mandatory Lowest Wage (Min-
imum Wage) and Guaranteed Wage Minimum, the minimum wage is HUF 98,000, approximately
€ 333.4 in 2013. 70% of double the minimum wage is HUF 137,200, approximately € 466.3.
47
48
The Amount of the Benefit The monthly amount is equal to the minimum old-age
oregségi nyugdı́j-minimum),49 irrespective of the number of children in
pension (€
the family. In case of multiple birth the amount is multiplied according to the
number of children (for example, doubled in case of twins, tripled in case of triplets,
etc.).50
Advantages and Disadvantages in Respect of Long-Term Care A great disadvan-
tage of the benefit is that it is payable to any person without checks on how the
amount is spent.
3.3.5 Child-Raising Support (Gyermeknevelési támogatás)
The Conditions of Eligibility for this Benefit For parents who raise three or more
children in their own home, if the youngest child is between 3 and 8 years old.51 The
beneficiary can pursue a gainful activity up to 30 h a week, or work from home
without any time restriction.52
The Amount of the Benefit The monthly amount is equal to the minimum old-age
pension, irrespective of the number of children.53
3.3.6 Family Allowance (Családi pótlék)
The Conditions of Eligibility for this Benefit Family allowance (családi pótlék) is
provided as
– child-raising benefit (nevelési ellátás) and
– schooling benefit (iskoláztatási támogatás).
The child-raising benefit (nevelési ellátás) is paid from birth up to compulsory
schooling age. The schooling benefit (iskoláztatási támogatás) is paid from school-
ing age until the termination of studies in the compulsory education system—
usually until 18 years. But there are some exceptions:
– in the case of studies in secondary school education or vocational training the
benefit is paid up to 20 years of age, or
– in case of special educational needs the benefit is paid up to 23 years of age.
49
The minimum old-age pension is HUF 28,500, approximately € 97 in 2013.
50
Paragraph (2) of Section 26 of Act LXXXIV of 1998 on Family Support (a családok
támogatásáról).
51
52
53
A disabled person above 18 years of age gets the child-raising benefit him-/
herself termination of the schooling benefit.54
A person who has terminated his/her studies in the compulsory education
system—usually at 18 years of age—and who has lost his/her parents or a single
parent during his/her studies gets his/her own schooling benefit.55
The Amount of the Benefit The family allowance is a monthly payment. The
amount of it depends on:
– the number of children
– the health status of the child
– whether a single parent or a family takes care of the child.
For example, the amount shall be in the case of56:
– 1 child in the family: HUF 12,200 (€ 42)
– 1 child, single parent: HUF 13,700 (€ 47)
– 2 children in the family: HUF 13,300 (€ 46) per child
– 2 children, single parent: HUF 14,800 (€ 51) per child
– 3 or more children in the family: HUF 16,000 (€ 55) per child
– 3 or more children, single parent: HUF 17,000 (€ 58) per child
– disabled child in the family: HUF 23,300 (€ 80)
– disabled child, single parent: HUF 25,900 (€ 89)
– child in foster home/with foster parent(s): HUF 14,800 (€ 51)
– child-raising benefit of his/her own: HUF 20,300 (€ 70)
– schooling benefit of his/her own: HUF 14,800 (€ 51).
3.3.7 Midwife and Health Visitor Service (Védőnői szolgálat)
Conceptual Definition The purpose of the midwife and health visitor service is to
protect children and women. The tasks of the mother-and-child health nurse include
the following:
• to advise on family planning,
• to provide care to pregnant mothers,
• to give assistance and counselling in the period of confinement,
• to promote a harmonious parent-child relationship, the bringing-up and social-
ization of the child from the neonatal period until his/her starting the student
legal relationship,
54
55
56
• to give the information necessary for a healthy lifestyle conforming to the child’s
development,
• to prepare the family for nursing a sick infant and child at home,
• to give assistance and counselling on living with and bringing up a child with
special needs for care, disability or behavioural disturbances,
• to carry out the tasks of a mother-and-child health nurse in nursery schools,
• to inform the families about the importance of age-related vaccinations, etc.57
3.3.8 Nursing Grant (Ápolási dı́j)
Conceptual Definition The nursing grant is a cash benefit depending on social

need; it is awarded exclusively to a person of age if he/she provides home care to a
relative in need of long-term care who is—(1) disabled or (2) under 18 years of age
and permanently ill or (3) elderly.58
Resolution No. 6/2002 (II. 28.) of the Constitutional Court states that “[. . .] the
relative of the elderly person in need of care who undertakes to provide care in
his/her home is eligible for a nursing grant. Thus, the nursing grant is not a social
assistance paid to the person who is cared for but a cash benefit which is paid to the
relative providing care to supplement his/her income loss suffered because of
providing long-term care.”
Advantages and Disadvantages in Respect of Long-Term Care Here we shall
examine three aspects—(a) the amount, (b) the type of eligibility in the case of
elderly care, and (c) the question of supervision.
(a) The Amount The disadvantage of the nursing grant is that the amount is very
low. The monthly amount depends on two factors.
One is related to the person providing care, namely to the question whether
he/she has regular income.
The other factor which influences the monthly amount of the nursing grant is
connected to the person who is cared for, namely what his/her age is and what
his/her state of health is—there are three state-of-health categories.
In 2013, the monthly amount of the nursing grant59—if the person providing care
does not receive regular income60—is:
57
Section 3 of Ministry of Health, Social and Family Affairs Decree No. 49/2004 (V. 21.) on the
Regional Midwife and Health Visitor Service.
58
According to the Labour Act (Act I of 2012 on the Labour Code [referred to as Labour Code]),
those who are taking care of their relatives can take unpaid leave for a maximum duration of
2 years.
59
Section 44 of Act III of 1993 on Social Administration and Social Assistance (t€orvény a szociális
60
Item b) of Paragraph (1) of Section 42 of Act III of 1993 on Social Administration and Social
– Hundred percent of the basic amount (alap€ osszeg)61 in the case of persons with
severe disabilities or persons under 18 years of age who are permanently ill,
– in the case of persons with severe disabilities in need of intensive care it is 130%
of the basic amount,62
– in the case of elderly care—the nursing grant is determined by the independent
local governments—it may not be less than 80% of the basic amount.63
This obviously shows that receipt of the nursing grant does not mean financial
security.
(b) Type of Eligibility The type of eligibility for elderly care is a disadvantage,
because the local governments have discretionary powers to award persons over
18 years of age eligibility for the nursing grant for providing elderly care. There-
fore, mainly because of the limited budget and the discretionary powers of local
governments, it can by no means satisfy mass needs.
(c) Question of Supervision A disadvantage is that the fulfilment of the obligation
to provide care cannot be fully supervised in practice. Although in its decree the
local government can specify the tasks of domestic care providers to supervise
whether the obligation to provide care is fulfilled, the capacity of domestic care
providers—as mentioned earlier—is limited as such, let alone with a view to
supervising those eligible for the nursing grant.
3.3.9 Orphan’s Allowance (Árvaellátás)
The Conditions of Eligibility for this Benefit There are two main conditions—one
of them refers to the child and the other one refers to the deceased parent.64
• Age limit of the child: 16 years or 25 years of age if he/she is a full-time student.
No upper limit if the orphan is or becomes disabled.
• Other conditions: the deceased parent must have fulfilled the service period
required for widow(er)’s pension (€ozvegyi nyugdı́j) before his/her death or must
have been in receipt of an old-age pension at the time of death.
The Amount of the Benefit In case of orphans having lost one parent, 30% of the
deceased parent’s old-age pension is paid for each child. Entitlement of the orphan
continues even after the remarriage of the parent or the child’s adoption. Sixty
percent of the deceased parent’s old-age pension is paid in case of orphans having
61
The basic amount is defined by Act CCIV of 2012 on the 2013 National Budget of Hungary
(Magyarország 2013. évi k€ ozponti k€ oltségvetéséről). This is HUF 29,500 (€ 100) per month.
62
It amounts to HUF 38,350 (€ 130).
63
This amounts to HUF 23,600 (€ 80).
64
Section 54–55 of Act LXXXI of 1997 on Social Insurance Pension (t€ orvény a
társadalombiztosı́tási nyugellátásokról).
lost both parents or whose living parent is considered to be a person with changed
working capacity.65
3.3.10 Pregnancy-Confinement Benefit (Terhességi-gyermekágyi

segély)
The Conditions of Eligibility for this Benefit At least 365 days of insurance during
the last 2 years before delivery and birth taking place
– during the insurance period or
– within 42 calendar days of its expiry or
– after its expiry, while in receipt of work accident sickness benefit (baleseti
táppénz) or
– after expiry of work accident sickness benefit within 28 calendar days.66
In cases of pregnancy without entitlement to pregnancy-confinement benefit
(terhességi-gyermekágyi segély), sickness benefit (táppénz) is paid.
The Amount of this Benefit Seventy percent of the daily average gross earnings of
the previous year—no ceiling—is paid, and it shall be paid during 24 weeks.67
Sickness Benefit for Nursing a Child (Gyermekápolási táppénz).
The Conditions of Eligibility for this Benefit The sickness benefit for nursing a
child is not a separate benefit but is part of the sickness benefit. So this benefit and
sickness benefit have common rules.
The duration of the benefit is:
– for breast-feeding a child under the age of 1 year or children below 1 year whilst
the child is undergoing inpatient treatment or nursing at home: until the child
reaches 1 year of age,
– for children between 1–3 years whilst the child receives nursing at home:
84 calendar days/year/child,
– for children aged 3–6 years whilst the child receives nursing at home: 42 calendar
days/year/child (84 days for single parents),
– for children aged 6–12 years whilst the child receives nursing at home: 14 cal-
endar days/year/child, (28 days for single parents).68
65
Section 56 of Act LXXXI of 1997 on Social Insurance Pension (t€ orvény a társadalombiztosı́tási
nyugellátásokról).
66
67
Paragraphs (1)–(2) of Section 42 of Act LXXXIII of 1997 on the Benefits of Compulsory Health
68
3.4 Disabled Persons
3.4.1 Financial Support for Severely Disabled Persons

(Fogyatékossági támogatás)
Conceptual Definition The “financial support for severely disabled persons” is a

monthly cash benefit paid to persons living with severe disabilities to promote
equality of opportunity. The purpose of the aid—irrespective of the income of the
person with severe disability—is to give financial help in order to contribute to
alleviating the social disadvantages resulting from severe disability.69
The Conditions of Eligibility for this Benefit A person with severe disability over
18 years of age is eligible for “financial support for severely disabled persons” who,
at the time of claiming the benefit, is a Hungarian national residing in Hungary or
has been granted permanent resident or immigrant status, or is recognized as a
refugee or stateless person by the Hungarian authorities provided that
(a) he/she has lost his/her vision completely and it cannot be improved with an aid
or operation, or he/she has low vision with minimal residual eyesight and for
this reason he/she can lead only a tactile-hearing lifestyle,
(b) the extent of his/her loss of hearing is such that he/she is not able to understand
speech even with a hearing aid,
(c) his/her intellectual impairment, which is due to a genetic or foetal defect or
birth trauma, or which developed as a result of a severe disease before 14 years
of age, is moderately severe or severe,
(d) his/her condition due to a developmental disorder affecting the whole person-
ality is moderately severe or severe on the basis of autonomy tests,
(e) due to the damage to or the dysfunction of the locomotor system he/she can
move only with the constant and necessary use of aids specified in a separate
rule of law, or that due to his/her locomotor disease pursuant to a separate rule
of law his/her condition cannot be improved even with an aid,
(f) his/her condition due to a chromosomal abnormality is qualified as moderately
severe or severe and his/her condition is long-lasting or permanent, furthermore
he/she is incapable of living an independent life or is in constant need of help by
others.70
The Amount of the Benefit As from 1 June 2013, the monthly amount of the
“financial support for severely disabled persons” is HUF 19,500, or HUF 24,000
for a person with multiple disabilities.71
69
Section 22 of Act XXVI of 1998 on the Provision of the Rights of Persons Living with Disability
and their Equality of Opportunities.
70
Paragraph (1) of Section 23 of Act XXVI of 1998 on the Provision of the Rights of Persons
Living with Disability and their Equality of Opportunities.
71
Paragraph (1) of Section 23/A of Act XXVI of 1998 on the Provision of the Rights of Persons
Living with Disability and their Equality of Opportunities.
3.4.2 Care Homes for Persons with Disabilities (Fogyatékos személyek

gondozóháza)
Conceptual Definition Care homes for persons with disabilities provide for persons
with some kind of disability to be accommodated temporarily if their families are
temporarily unable to take care of them.72
Advantages and Disadvantages in Respect of Long-Term Care A great disadvan-
tage of this benefit is that the possibility to be accommodated is not available to
everybody.
3.4.3 Disability Benefit (rokkantsági ellátás)
Conceptual Definition Benefits for persons with changed working capacity can
take the form of either rehabilitation benefit (rehabilitációs ellátás) or disability
benefit (rokkantsági ellátás). Both benefits are financed from the Health Insurance
Fund (Egészségbiztosı́tási Pénztár).
The Conditions of Eligibility for this Benefit Persons eligible for benefits for
persons with changed working capacity (megváltozott munkaképességű személyek
ellátásai) are those whose state of health has, in the course of a complex assessment,
been assessed at a rate of 60% or less and
– who have been insured for at least 1095 days within 5 years before submitting
the claim,
– who are not performing any gainful activity and
– who do not receive any regular cash benefits.73
A person with changed working capacity is entitled to disability benefit in cases
where rehabilitation is not recommended—if he/she could not be rehabilitated, or
the time left before reaching retirement age does not exceed 5 years.74 The
disability benefit (rokkantsági ellátás) may be provided from the date of meeting
the eligibility criteria, at the earliest on the first day of the 6-month period preceding
the date of submitting the claim. It is a permanent benefit and it is, upon the request
of the recipient, paid until the date of the latter’s reaching retirement, in which case
it is transformed into an old-age pension, the amount of which remains the same.75
72
Section 83 of Act III of 1993 on Social Administration and Social Assistance (t€ orvény a szociális
73
Section 2 of Act CXCI of 2011 on Benefits for Persons with Changed Working Capacity and
Amendments of Certain Acts (t€ orvény a megváltozott munkaképességűek ellátásairól).
74
Section 5 of Act CXCI of 2011 on Benefits for Persons with Changed Working Capacity
and Amendments of Certain Acts (t€ orvény a megváltozott munkaképességűek ellátásairól).
75
The Amount of this Benefit The amount is based on the recipient’s average monthly
income, and its minimum is set at certain percentages of the minimum wage.
If his/her rehabilitation is not possible76:
(a) based on his/her health condition his/her occupational rehabilitation is possible
but due to other circumstances occupational rehabilitation is not recommended,
Amount: 40% of the average monthly income
Minimum: 30% of the minimum wage, respectively
Ceiling: 45% of the minimum wage
(b) based on his/her health condition he/she needs permanent occupational reha-
bilitation but due to other circumstances occupational rehabilitation is not
recommended,
(c) he/she can be employed only with continuous support,
(d) he/she has considerable damage to his/her health and is not capable of self-
support or is capable only with help.
3.4.4 Homes for Persons with Disabilities (Fogyatékos személyek

Otthona)
Conceptual Definition This type of institution provides comprehensive care to

persons who are unable to care for themselves, or to those being able to do so
only with continuous help (meals provision, housing, care, healthcare).
A person with disability can get into this type of institute if his/her education,
employment and care cannot be provided without the help of such an institution.77
76
Paragraph 2 of Section 3 and Section 12 of Act CXCI of 2011 on Benefits for Persons with
Changed Working Capacity and Amendments of Certain Acts (t€ orvény a megváltozott
munkaképességűek ellátásairól).
77
(t€
3.4.5 Rehabilitation Benefit (rehabilitációs ellátás)
Conceptual Definition Benefits for persons with changed working capacity can
take the form of either rehabilitation benefit (rehabilitációs ellátás) or disability
benefit (rokkantsági ellátás). Both benefits are financed from the Health Insurance
Fund (Egészségbiztosı́tási Pénztár).
The Conditions of Eligibility for this Benefit Persons eligible for benefits for
persons with changed working capacity (megváltozott munkaképességű személyek
ellátásai) are those whose state of health has been assessed at a rate of 60% or less in
the course of a complex assessment and who
– had been insured for at least 1095 days within 5 years before submitting the
claim,
– are not performing any gainful activity and
– do not receive any regular cash benefits.78
A person with changed working capacity is entitled to rehabilitation benefit if
he/she can be rehabilitated.79 The rehabilitation benefit (rehabilitációs ellátás)
may be provided from the date of meeting the eligibility criteria, at the earliest on
the date of submitting the claim, for the period required for rehabilitation, within a
limit of 3 years from the start of benefit payments.80
The Amount of this Benefit The amount is based on the recipient’s average monthly
income, and its minimum is set to certain percentages of the minimum wage.
– persons for whom rehabilitation is still possible:
Minimum: 30% of the minimum wage
– persons who need permanent rehabilitation:
Minimum: 40% of the minimum wage
Ceiling: 50% of the minimum wage.81
78
79
80
Paragraph 1 of Section 7 of Act CXCI of 2011 on Benefits for Persons with Changed Working
Capacity and Amendments of Certain Acts (t€ orvény a megváltozott munkaképességűek
ellátásairól).
81
3.4.6 Rehabilitation Institutes for Persons with Disabilities

(Rehabilitációs intézmény fogyatékkal élő személyek számára)
Conceptual Definition The rehabilitation institute for persons with disabilities

serves to develop or restore the ability of residents to lead independent lives.
The Conditions of Eligibility for this Benefit The rehabilitation institute for persons
with disabilities is for persons living with disabilities whose education, training,
re-training and rehabilitation employment can be achieved only in an institutional
setting. The rehabilitation institute for persons with disabilities prepares the persons
living there for returning to their families and home environment and organizes
follow-up care after the institutional care is discontinued.82
3.5 Elderly Persons

3.5.1 Care Homes for the Elderly (Időskorúak gondozóháza)
Conceptual Definition A care home for the elderly provides for elderly people and
for people over 18 years of age to be accommodated temporarily if, for instance due
to sickness or for some other reason, they are temporarily unable to take care of
themselves.83
disadvantages of this form of care are approached from two aspects—(a) duration
of care, and (b) capacity of care.
(a) Duration of care. The disadvantage of the service is that it can be used for a
maximum period of 1 year only, although this period can be prolonged once by
one more year based on the expert opinion of the physician of the respective
institution.84 This relatively short period is not sufficient for the management of
the risk of elderly care—which frequently lasts until death.
(b) Capacity of care. A disadvantage in terms of capacity is that the institutional
capacities are insufficient to satisfy the mass demand which arises due to the
increasing number and proportion of elderly people. Current regulations also
prescribe that the local governments shall organize the services for the tempo-
rary care of elderly people—among them the care homes for the elderly—in
settlements with more than 30,000 permanent residents.
82
Paragraph (1)–(2) of Section 74 of Act III of 1993 on Social Administration and Social
83
Section 82 of Act III of 1993 on Social Administration and Social Assistance (t€orvény a szociális
84
3.5.2 Homes for the Elderly (Idősek Otthona)
Conceptual Definition Homes for the elderly provide care to persons who are
unable to take care of themselves, or able to do so only with continuous help, but
whose state of health does not necessitate regular treatment in in-patient institu-
tions. As a rule, elderly people85 can be admitted, but people who are over 18 years
of age and live with disabilities can also be eligible for this service.86
disadvantages related to elderly homes are examined from three aspects—(a) -
co-payment, (b) capacity of care, and (c) manner of satisfying the need.
(a) Co-payment. This service could be the institutional solution to the management
of the risk of elderly care, but the amount of co-payment to be paid by the
person or by his/her legal representative is very high. Pursuant to Paragraph
(2) of Section 117 of Act III of 1993 on Social Administration and Social
Assistance (t€orvény a szociális igazgatásról és szociális ellátásokról), the
co-payment for permanent care shall not exceed 80% of the monthly income
of the eligible person. Act III of 1993 on Social Administration and Social
Assistance (t€orvény a szociális igazgatásról és szociális ellátásokról) specifies
the maximum amount of co-payment to be paid, but in practice the fee for these
services is around the statutory maximum, particularly since State subsidy has
been decreasing.87 Act III of 1993 on Social Administration and Social Assis-
tance (t€
orvény a szociális igazgatásról és szociális ellátásokról) provides for
exemption from co-payment for only a very small group of persons. Pursuant to
Paragraph (3) of Section 114 of the Act, services shall be provided free of
charge for eligible persons who have no income and no relative who is obliged
and able to provide support and care.
In addition to the co-payment, a single lump-sum contribution may be
required for providing circumstances “much better than average”,88 and a
personal co-payment supplement may also have to be paid.
85
Pursuant to Paragraph (1) of Section 68 of Act III of 1993 on Social Administration and Social
Assistance (t€orvény a szociális igazgatásról és szociális ellátásokról), a person qualifies as an
elderly person if he/she has reached the retirement age applicable to him/her.
86
87
Appendices No. 3 of the acts on the budget of the Republic of Hungary regulate the extent of the
relevant State subsidy. While a subsidy of HUF 769,200 per person was provided for in Act
CXXXV of 2004 on the Budget of the Republic of Hungary for the Year 2005, only HUF 689,000
was granted per person in Act CII of 2008 on the Budget of the Republic of Hungary for the Year
2009, and HUF 635,650 per person in Act CLXXXVIII of 2011.
88
For instance, receiving a single room is to be regarded as a service much better than average.
(b) Capacity of care. The capacity of elderly homes is limited, thus they cannot in
their present form meet mass demand.
(c) Manner of satisfying the need. The great advantage of elderly home is that
although a person is not taken care of in his/her home, home-like circumstances
can be provided for him/her. Besides, this home-like atmosphere can further be
enhanced—especially in homes with fewer residents—by the loyal, close
community of residents.
3.5.3 Hospice Service at Home (Otthoni Hospice)
Conceptual Definition Hospice care is a special area of elderly care, the purpose of
which is to provide care to the (dying) person eligible for health services. As part of
this, it aims to provide physical and emotional nursing and care to a patient with a
lengthy terminal illness, to improve his/her quality of life, to alleviate his/her
suffering and to preserve his/her human dignity all the way to the end of life.89
Hospice service also includes assisting the family members of the terminal patient
in nursing the patient, and providing emotional support to them for the duration of
the illness and during the period of bereavement and mourning.90
Advantages and Disadvantages in Respect of Long-Term Care As concerns the
advantages and disadvantages of hospice services, two aspects shall be pointed
out—(a) the number of ordered services, and (b) the satisfaction of special needs.
(a) Number of ordered services. A disadvantage to be pointed out in connection
with ordering the service is its limited number, as it can be ordered only for
50 days. However, it is possible to order it again on two further occasions within
1 year from the beginning of care, on the basis of another medical examination.
(b) Satisfaction of special needs. In connection with this, a definite advantage is
that this service can handle a very difficult, intimate situation appropriately in a
humane way. The terminally ill person can spend the last period of his/her life
in his/her own home with his/her loved ones, and the relatives also receive
emotional support from the service. Another definitely positive aspect is that
besides home visits, the service also provides continuous stand-by duty.
89
Paragraph (1) of Section 99 of Act CLIV of 1997 on Health (hereinafter referred to as Health Act).
90
Paragraph (4) of Section 99 of the Health Act.
4 Other Aspects
4.1 Modern Ideas of Management (e.g. Budget)
Long-term care attracts hardly any attention in national politics in Hungary. The
political debates on social protection are dominated by pensions and health care.
Even though LTC is not in the focus, We have found some events that may be of
interest.
The first related issue was the National Strategy for the Elderly (Idősügyi
Nemzeti Stratégia), which was passed by Parliament in September 2009. The
strategy covers many age-related subjects such as active ageing, intergenerational
relations, employability of the elderly, health conditions and others; the LTC
system is an integral part of it. Passing the strategy as a Parliament resolution is
an important step in the political institutionalisation of care for the elderly, which
began with the establishment of the National Council on Ageing and Older People
(Idősügyi Tanács), an umbrella organisation of various pensioners’ associations.
There are clear signs of increasing standards in decision-making in the admin-
istration of LTC. Efforts have been made in order to build more effective capacities,
such as administrative datasets and improved tools for analysis, which will result in
a more accurate mapping of needs, cost planning and cost projections for the
coming years. Nevertheless, these small-step improvements still leave some key
questions unanswered. For example: the integration within the LTC system.
4.2 Integration Within the LTC System
In particular, the Hungarian LTC system has a dual structure: the LTC services are
separately administrated in the health care system and the social care system. Both
systems have their own distinct legislation, financing mechanism and services. The
two systems maintain parallel institutional networks. This applies to institutional
care as well as home care. There is no cooperation between the two systems and
neither of them applies, let alone coordinates, a system of case management. The
division of tasks between the two branches is unplanned and frequently inefficient.
The problem is that the recent measures do not target this issue.
According to a report by the State Audit Office (SAO 2009), the optimal division
of labour would be to provide care to those who need special health services in the
health care system, whereas those who do not need such services but whose
physical and mental stability depends on special care, would stay in institutional
care facilities. In reality, this is frequently not the case.91
A project was launched by the former government on “Homogenous Care
Categories”, with the explicit aim of surveying nursing activity in residential
91
Czibere and Gál (2010).
homes and social care in hospitals, in order to map the boundaries of social care and
health care. Another project, ISHCS (“Integrated Social and Health Care System”
or ISZER in its Hungarian acronym) had the objective of maintaining and promot-
ing the independence of older individuals and the optimal utilisation of community,
hospital and institutional resources by coordinating services. Regulatory efforts
have also been undertaken with regard to clearing the profiles of services, such as
the withdrawal of permissions for residential homes in the social care system to
provide special nursing care activities from 2008.
4.3 Demand and Supply
The most critical issue in the Hungarian long-term care system is the low level of
access to services. The limited public resources that can be devoted to this purpose
leave much of the need for LTC unmet. In addition, utilization of these resources is
not efficient. Instead of focusing on cooperation and coordination with alternative
providers such as households, the system focuses on funding institutions rather than
tasks.
In general, more than 80% of the dependent elderly do not have access to home
care, and about 60% of severely dependent persons do not have access to residential
care. The rest of the elderly in need of care are forced to turn to relatives or
neighbours. Most of the care provided for elderly persons is informal.
With the lack of relevant data, which are a requirement for evidence-based
policies, decision-making is frequently exposed to lobbying pressure. This could
explain why recent regulations favour health care at the cost of social care, although
the latter is more cost-effective. The institutional net is sparse, making the chances
of access asymmetric. Rural areas are particularly poorly covered. In contrast, some
aspects of social care are over-decentralised, delegating responsibilities to more
than 3200 local governments in a population of ten million.92
4.4 Policy Goals
The policy goals of the Hungarian government with regard to the LTC system were
summarised in the National Strategy Report on Social Protection and Social
Inclusion 2008–2010. The report pronounced as the overarching aims the creation
of a system that can adequately respond to the challenges of demographic changes,
the consolidation of the institutional framework of long-term care and the estab-
lishment of standardised rules across the two systems of services, health care and
social care. These overarching aims are spelled out in more specific objectives, such
92
Czibere and Gál (2010).
as to maintain and further develop the two separate systems (health care and social
care) but with an efficient coordination between them; to improve interoperability
and cooperation between the two named branches; to eliminate inequalities in the
access to care services; to introduce flexibility so that the system will meet
individual needs in a flexible way; to take measures required for ensuring financial
sustainability; to create the necessary mechanisms for the provision of services and
for funding; and to create uniform standards and protocols.
There is a new approach which is called task financing (feladatfinanszı́rozás).
Task financing is regulated by Sections 117-118 of the new act on local govern-
ments (Act CLXXXIX of 2011 on the Local Governments of Hungary). Pursuant to
this, parallel with the rearrangement of the tasks of the local governments, the
system of funding will also change from 2013. As part of this, task financing will be
introduced with the aim to provide the sources necessary for the local governments
to perform their tasks, to prevent any operating deficits from arising in the future. In
the course of task financing, the budgetary support for each local government will
be determined by taking into account the operating expenditure needs specified by
the State as well as the revenue possibilities of the local governments for opera-
tional purposes. This also applies to mandatory social tasks to be performed by local
governments.
Another initiative is the elderly-friendly housing program. It enables safe living
at home for elderly people by altering the apartments of elderly persons with loss of
functions to ensure greater accessibility. It is vitally important to prevent falls. An
investigation conducted prior to the alteration in a country town and a district of
Budapest found that around half of the elderly persons living at home and in need of
care have (had) falls and around one fifth of the falls are caused by unsuitable
conditions in the apartment. Numerous apartments have already been altered.
Interestingly, it was much more difficult to introduce this service of elderly-
friendly housing among persons cared for by someone being paid a “nursing grant
for a family member” because of the resistance of family members, who did not
want to accept any kind of help. There may be a number of reasons for this; family
members may be afraid that the elderly person will gain greater autonomy and so
become less dependent on them and they may also lose their small income; they
fear that the appearance of the State and the civil organisation will in some way
endanger their inheritance; they are afraid of exposing the elderly person to the
increasingly widespread abuse and robbery.
4.5 Case Management
The Hungarian LTC system still bears some marks of central planning that was in
effect in the country between 1950 and 1990. The organisational logic of the central
planner dictates centralisation (for it is easier to control fewer institutions); a
preference for institutionalised care compared to managing personal networks
such as home-based care; and a kind of organisational blindness that does not
notice needs beyond its sphere of operations. The consequence, as in other fields of
activities, is a dual structure: a centralised system of institutions and a wide range of
household activities by which people adjust to the situation.
A further feature of central planning which, in principle, assumes the planner to
be better informed than regulators of a market is that the planning process is biased
towards sectors that are easier to measure.
This centralised structure is still recognisable although it has changed signifi-
cantly since 1990. New providers, in particular charities, entered the scene; public
administration became more decentralised; many of formerly informal activities
became formal; and much of the demand that used to remain unmet now is met by
supply.
Eligibility Approach Up to 2008, age was the only prerequisite for social care
entitlement. Anybody who reached the age of 62 years, the retirement age, was
entitled. No means test was required and the extent of lost physical or mental
capabilities was not checked. Personal insurance history was not controlled until
2006. As a major change, in 2008 an eligibility test was introduced, which evaluates
the physical and social conditions of applicants.
Training of Informal Carers There are no specific training programmes for infor-
mal LTC workers (who are usually family members) in Hungary. However, carers
who are deterred from the usual workforce because of caring responsibilities are
provided pension rights and credits as well as a nursing grant.
In Sum A Hungarian social work research proved that case work models are not
effective in working with excluded social groups, and that the approach of devel-
oping community focused models—which are considered to be more effective—has
just begun.
However, there is a good example which is called “person-centred caring”. It is
an official policy of elderly care, which consists of four elements: (1) personal
caring plan, (2) knowledge of the life-story of the client, (3) personal preferences of
the client and (4) personal property.
1. Personal caring plan: It takes the life story, personality factors, lifestyle and
interest of the elderly patient into consideration.
2. Knowing the life story of the client: Activity of the client, participation in
programs
3. Personal preferences: Hobbies, preferred programs, courses, favourite style
(clothes)
4. Personal property: Presence and stability of the person’s own things from
his/her life: family photos, souvenirs, old pieces of furniture, etc.
Finally, it is important to mention that there is a—not widely spread—practice of
sending out dangerous caregivers to the elderly. It means that agencies place
unqualified, possibly criminal caregivers in the homes of vulnerable seniors, take
payment from the clients and claim the State support for elderly care.
4.6 Personal Budget Concept
In Hungary we do not have what the UK government introduced in 2010: the

personal care budget. According to the UK government sources, the personal
budget concept gives everyone who uses social care services control of their own
budgets, enabling them to tailor the service. Behind it was a clear Liberal principle,
allowing patients total autonomy. According to the system, the personal budget
users either receive direct cash payments or hand them over to a social care
professional who will administer the budget on the individual’s behalf.
4.7 Targeting
4.7.1 Recent Situation
There is no special targeting system in Hungarian social care. Furthermore, there

exists no national definition for the need of care. In 2008, an assessment process
was introduced but this applies only to home care and institutional care but not in
other segments of social care (such as meal provision) nor in health care. Since
1 January 2008, eligibility to institutional care has been restricted to those who need
care for more than 4 h a day. People who need care for 2–4 h a day are entitled to
home care services. For needs below 2 h a day no care is financed from public
sources.
Need is established by a complex assessment process. Applicants are evaluated
in 16 various activities and resources grouped into larger dimensions of assessment,
such as independence in daily activities (eating, bathing, dressing, toilet use); self-
reliance (dealing with household utilities and money, following therapy); walking;
mental functions (orientation in space and time, communication); eyesight and
hearing; need for health care; need for supervision; social circumstances (social
network, housing, financial background; the last two only in assessments related to
institutional care).
Abilities and resources are measured on a 0-to-5 scale and an algorithm trans-
lates the resulting values into a time frame. These restrictions reduced utilisation by
about 10% among new applicants. The assessment process is initiated by the GP
and carried out by an expert committee appointed by the local notary (in the case of
home care) or the expert committee of the National Rehabilitation and Social
Office. These criteria are national standards and they are binding but, as mentioned
above, apply only to a small segment of social care.
4.7.2 A New Experts’ Draft: “The National Social-Political Concept

for the Years 2011–2020
This is a long-term expert strategic development program. Currently, this is not an

official government program. The concept is fully in line with the international
conventions which are decisive in social policy, and with the European Union’s
Common Strategy until 2020.
In the chapter entitled The Fundamentals of the Concept, the most important
challenges for social policy are described in short and the principles and objectives
of the concept are worded on the basis of a situation analysis. The concept puts
forward ideas of transformation both for social support and services, and a new
structure with regard to the framework of the administrative system is also
suggested. Points of connection with the EU’s development policy and associated
sectors are also addressed.
The new system is based on two central and centralized organs, the Social
Administration Centre (Szociális Adminisztrációs K€ozpont, hereinafter referred
to as SAC) and the Support and Consultation Centre (Támogató és Tanácsadó
K€ozpont, hereinafter referred to as SCC), which will control and organize access to
services and cash benefits. SACs are county-based centres with township branch
offices, while SCCs operate on township, micro-region levels with access points in
micro-regions and settlements. The two centres will complement each other and
will work with simplified procedures, and can be approached at short notice.
5 Summary
It is clear from the above that in Hungary the LTC system does not exist in an
independent form, and that it is searching for its place within the structure of the
social system. The social services available are provided without adopting the new
methods and techniques used abroad (e.g. case management, personal budget,
targeting, market concepts, etc.).
As a summary of the current ways of the risk management of care—especially
elderly or disabled care—it can clearly be stated that neither non-governmental nor
governmental problem solving offers solutions which support each other, are
available to everyone and satisfy all needs, with the help of which we could look
to possible periods of elderly care or disabled care in our lives or in our relatives’
lives without worry.
Hungary has an appropriate system of childcare. As the Hungarian society is
ageing, one of the main aims is to promote the willingness to have children by
operating a proper and stable care system. At the same time, another aim is to keep
people from having children merely for “subsistence” reasons.
We can summarize the main insufficiencies in the present system of care—
especially elderly or disabled care—as follows.
• The conceptual structure of the legal rules of care is not uniform, and the
individual rules of law are not in harmony.
• As concerns the main direction of the regulations, the present structure of care
gives preference to the assistance type of social protection system operated by
the State.
• The performance capacity of services providing care is insufficient—in the
absence of financial resources and also as to the number of persons
providing care.
• There is no appropriate connection and harmony between current services
of care.
• The present system of care neglects the relatives who provide care. Today, home
care is not a real alternative as the period of care does not, as a rule, qualify as an
insurance period, and there is no central and/or local authority to provide help-
advice-supervision; further, social respect for these authorities is low.
• The existence of long-term care in terms of social law is ignored by the current
regulations of governmental solutions, because a great part of benefits can have a
role in the management of elderly or disabled care only in their effect.
• Current regulations pay no attention whatsoever to the aimed prevention of the
need for elderly care.
• The benefits provided by the present system are not available to every person
affected by old age or disability dependency.93 It is exactly those with an
average income who do not have sufficient possibilities to receive benefits. As
the case is, a person needs either considerable or—on the contrary—meagre
financial resources to receive the benefits.
• The financial and conscious conditions for the individuals’ willingness to save
are lacking today.
• Those who need elderly or disabled care are uninformed about their current
possibilities.
• As concerns the main direction of the regulations, the present structure of care
gives preference to the assistance type of social care system operated by the
State.
• There are few service providers involved in the care of the elderly or of persons
with disabilities and national coverage is uneven.
Needless to say, these shortcomings can be remedied efficiently if in the future
management of care the problems are regarded as a homogenous entirety, summa-
rizing and incorporating the legal and non-legal possibilities of both prevention and
treatment.
93
Soós writes that in addition:“approximately 40% of local governments do not or hardly operate
mandatory basic services. Another problem is that in many cases the services are unavailable in
those small settlements where there is the greatest need for them [. . .] because of the ageing of the
population.” Soós (2009), p. 73.
The correction of the current legal regulations means proposals which are built
on the current system of regulations. Instead of going into the details of Hungarian
specifics, let us present only one of our proposals—home care.
The necessity to change home care into an employment legal relationship is
based fundamentally on two circumstances and on their causes, according to the
following: On the one hand, this type of home care could be the real alternative to
market care, which is missing from the present structure of long-term care. On the
other hand, the current nursing grant—for reasons expounded above—cannot offer
a real solution in elderly or disabled care.
The changing of home care into an employment legal relationship is analysed
along two dilemmas—(a) who the employer would be, and (b) what type this
employment relationship could be.
(a) The person of the employer. The first question to be answered is who the
employment contract could be concluded with. This question arises not from
administrative aspects in the first place but rather because employment entails
certain obligations for the employer (administrative obligations, entitlement
and obligation to control, obligation to pay remuneration and contribution), for
the assuming of which a well-justified—mostly economic—interest is neces-
sary. Thus, the question arises as to who would actually have an interest in
taking on the financial burden of this employment relationship. There is always
a financial interest underlying employment both on the employer’s and the
employee’s side. The interest of the caregiver as an employee can be seen
clearly because he/she would like to make up for his/her loss of income
resulting from providing care because he/she has no time to engage in a gainful
activity while providing care. The State may have a financial interest in its
function as an employer, because institutional care of persons in need of care is
expensive. Thus, it may seem logical to place that financial burden on the State
that is actually on the citizens. At the same time, this logic can be accepted only
as long as the total costs of remuneration remain below the costs which would
be incurred in case of accommodation of these persons in need in care institu-
tions. Considering the fact that according to current regulations the awarding of
the nursing grant and the organization of the service of domestic care belong to
the tasks of local governments, local governments could be assigned to be the
employers in the home care employment relationship, as the subject of all the
associated employment obligations.94
94
We hold the view that it is necessary to refer this employment relationship into the competence
of the State—more specifically into that of the local governments—in order to ensure controlla-
bility, quality standards and to curtail malpractices. At the same time, when we examine the
interests associated with the employment legal relationship, it should be pointed out that the
interest of the person cared for can also be identified clearly, namely that he/she is helped in his/her
dependency in his/her home. Therefore we can state in advance that the interest of the individuals
also needs to be considered, which could take the form of calculating a certain amount of
co-payment. This could be raised with the involvement of voluntary welfare funds.
(b) Type of the employment relationship. Employment relationship has several

forms or types, with different legal regulations pertaining to them.
In our view, the main aspects of the special employment legal relationship of
Hungarian official foster parents could be taken as a model for the care activity.
This analogy could be used because all the current problems mentioned when
discussing the reasons for the change into an employment legal relationship could
be remedied.
This legal relationship could be applied in the case of local governments.
Similarly to the current official foster parent legal relationship, it would be an
insurance legal relationship. Thus, the current problem that entitlement to the
nursing grant does not give eligibility for benefits depending on period of insurance
would be solved. Modelled on the example of the foster parent service, the service
to provide home care could be developed, as part of which preliminary trainings or
possibly further trainings could be organized. In the framework of the service
substitution could also be organized if the caregivers are unable to provide service
for a shorter time. Moreover, a counselling network could make their activity more
co-ordinated and, last but not least, more controllable, and remuneration in the
framework of a legal relationship could also increase the social recognition and
financial rewards of the caregivers.
In its Resolution No. 6/2002 (II. 28.) the Constitutional Court held the opinion
regarding the nursing grant that “it aims to facilitate the socially desirable situation
in which the home care of chronically ill persons is provided above all by their
immediate relative(s).” In our view, this statement should be considered authorita-
tive for this employment legal relationship, too. Accordingly, care provision
through a relative should be given priority in future legislation. At the same time,
however, in view of demographic ageing, it would be a mistake to exclude care
provision through non-relatives95 from this employment legal relationship. There-
fore we consider it important to point out that the employment legal relationship of
home care also gives the possibility for non-relatives to provide care.
Summary It would certainly be a mistake to modify the regulations on home care
alone, because the reconsideration and re-regulation of the associated institutional
and service-providing structures are essential for raising future funds and for
effectively incorporating this employment legal relationship into the current system
of regulations. Without doing so, the current problems of home care cannot actually
be managed, and what is more, a greater damage would be caused both to the local
governments, who are in a tight corner anyway, and to the system of legal
regulations.
95
As presented in the foregoing, Section 131 of the currently effective Labour Code and Sections
40-44 of Act III of 1993 on Social Administration and Social Assistance (t€ orvény a szociális
igazgatásról és szociális ellátásokról) on the nursing grant specifically regulate the possibility of
care provided by a relative.
Funds could be raised from the present resources of the nursing grant on the one
hand, and on the other hand, the current basic social services and the institutional
structure of specialized care which belong to this field (e.g. domestic care, day care
and also e.g. old people’s homes, etc.) could be reconsidered in connection with
their underlying funding system. However, the interest in care arising on the side of
the person in need of care must not be disregarded either when funding is calcu-
lated. In view of the principle of social law self care, the person who is no longer or
not yet dependent can rightly be expected to provide, in advance, for the periods of
his/her life when he/she will be unable to care for himself/herself. The State has
great responsibility, however, in determining how the citizens can fulfil this obli-
gation. Basically, it has two options to ensure this. It will either promote various
ways of self care indirectly—by defining the legislative background and helping
citizens putting enough money aside for self care—or it will directly organize the
system of governmental long-term care—possibly with the help of a complex
model of long-term care to be introduced in the future.
References
Andorka R (2006) Bevezetés a szociológiába. Osiris Kiadó, Budapest

Bácskay A (2005) Gondozási formák az idősellátásban – a szociális alapellátás. Kapocs.
IV. évfolyam, 6. szám
Balogh Z, Borbás I, Lakó E (szerk.) (2008) Az ápolás helyzete Magyarországon 2008.
Egészségügyi Szakképző és Továbbképző Intézet, Budapest
Cseh-Szombathy L (1971) A család szerepe az € oregek ellátásában és életében. In: Lőcsei Pál:
Család és házasság a mai magyar társadalomban. K€ ozgazdasági és Jogi K€ onyvkiadó, Budapest
Czibere K, Gál R (2010) The long-term care system for the elderly in Hungary. http://www.ancien-
longtermcare.eu/sites/default/files/ENEPRI%20RR%20No%2079%20Hungary.pdf (date of
downloading: 30 June 2017)
Gáthy V, Széman Z (1998) Az idősgondozás néhány kérdése egy japán-magyar € osszehasonlı́tó
kutatás tükrében. Társadalomkutatás. 1–2. szám
Haimann É (2006) Kül€ onbség az otthoni szakápolás és a házi segı́tségnyújtás k€
oz€
ott (Difference
between home medical care and domestic care). 2006. 10. 24. http://www.lelekbenotthon.hu/
modules.php?name¼News&file¼article&sid¼169, www.ksh.hu
Soós Z (2009) Reform után. A kistérségi k€ ozszolgáltatási reform hatásai a Téti kistérség szociális
szolgáltatási rendszerére. Esély. 1. szám
State Audit Office of Hungary (2009) REPORT on the Activities of the State Audit Office of
Hungary in 2008
Vid M (1943) Beveridge-terv. Keresztes Kiadás, Budapest
Fundamental Law of Hungary
Act CCIV of 2012 on the 2013 National Budget of Hungary

Act I of 2012 on the Labour Code (referred to as Labour Code)
Act CXCI of 2011 on Benefits for Persons with Changed Working Capacity and Amendments of
Certain Acts (t€orvény a megváltozott munkaképességűek ellátásairól)
Act CLXXXVIII of 2011 on the 2012 National Budget of Hungary

Act CII of 2008 on the Budget of the Republic of Hungary for the Year 2009
Act CXXXV of 2004 on the Budget of the Republic of Hungary for the Year 2005
Act LXXXIV of 1998 on Family Support (t€ orvény a családok támogatásáról)
Act XXVI of 1998 on the Provision of the Rights of Persons Living with Disability and their
Equality of Opportunities
Act CLIV of 1997 on Health (referred to as Health Act)
Act LXXXIII of 1997 on the Benefits of Compulsory Health Insurance (referred to as Health
Insurance Act)
Act LXXXI of 1997 on Social Insurance Pension (t€ orvény a társadalombiztosı́tási
nyugellátásokról)
Act XXXI of 1997 on the Protection of Children and on the Administration of Guardianship
(t€orvény a gyermekek védelméről és a gyámügyi igazgatásról)
Act III of 1993 on Social Administration and Social Benefits (referred to as Social Act)
Government Decree No. 390/2012 (XII. 20.) on Mandatory Lowest Wage (Minimum Wage) and
Guaranteed Wage Minimum
Government Decree No. 168/1997 (X. 6.) on the Implementation of Act LXXXI of 1997 on Social
Security Pension Benefits
Ministry of Health, Social and Family Affairs Decree No. 49/2004. (V. 21.) on the Regional
Midwife and Health Visitor Service
Ministry of Welfare Decree No. 47/1997 (XII. 17.) on the Supply of Breast Milk in the Framework
of Compulsory Health Insurance
Ministry of Welfare Decree No. 20/1996 (VII. 26.) on Home Medical Care
Resolution No. 6/2002 (II. 28.) of the Constitutional Court
International Covenant on Economic, Social and Cultural Rights of the United Nations Organiza-
tion (16 December 1966)
International Labour Organisation Convention No. 102 concerning Minimum Standards of Social
Security (28 June 1952)
Proposal for the Joint Report on Social Protection and Social Inclusion 2007 COM(2007)1
Long-Term Care Benefits and Services
in Italy
Eva Maria Hohnerlein
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231
1.1 Systems Involved . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 234
1.1.1 Monetary Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 234
1.1.2 Inpatient and Outpatient Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 235
1.1.3 Public Support for Family Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 236
1.1.4 Regional Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 236
1.2 Concepts and Definitions of Long-Term Care Dependency . . . . . . . . . . . . . . . . . . . . . . . . . 237
1.2.1 Definitions at National Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 238
1.2.2 Definitions in Regional Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 240
1.3 Statistics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242
2 Monetary Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244
2.1 National Attendance Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244
2.1.1 Entitlement Criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244
2.1.2 Benefit Amount . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246
2.1.3 Assessment of Long-Term Care Dependency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 247
2.1.4 Organization and Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 248
2.2 Pensions and Allowances for the Civilian Disabled and Invalids . . . . . . . . . . . . . . . . . . . 248
2.2.1 Special Benefits for Adults with Reduced Earning Capacities . . . . . . . . . . . . . . 248
2.2.2 Special Benefits for Children and Adolescents with Disabilities . . . . . . . . . . . 249
2.2.3 Benefits for Particular Forms of Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 249
2.3 Allowances Under Privileged Social Protection Schemes . . . . . . . . . . . . . . . . . . . . . . . . . . . 250
2.3.1 Statutory Work Accident Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 250
2.3.2 Statutory Pension Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251
2.3.3 Indemnization Schemes for Victims of War and Other Victims . . . . . . . . . . . . 251
2.4 Fiscal Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 252
2.5 Monetary Benefits Under Regional Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253
2.5.1 Entitlement Criteria and Benefit Amounts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253
2.5.2 Organization and Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 256
3 General Legal Framework of Long-Term Care and Social Services . . . . . . . . . . . . . . . . . . . . . . 257
3.1 Legislative Powers of the State and the Regions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257
3.2 Definition of Core Levels of Benefits (livelli essenziali) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257
E.M. Hohnerlein (*)

Max Planck Institute for Social Law and Social Policy, Munich, Germany
e-mail: hohnerlein@mpisoc.mpg.de

https://doi.org/10.1007/978-3-319-70081-6_7
230 E.M. Hohnerlein
3.2.1 Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 258

3.2.2 Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 260
3.3 Administration of Healthcare and Social Services at National, Regional and Local
Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 262
3.3.1 Healthcare Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 263
3.3.2 Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 264
3.3.3 Integrated Social Healthcare Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265
3.4 Planning of Long-Term Care Services at the National and Regional Level . . . . . . . . 266
3.5 Participation of Private Subjects in the Provision of Healthcare Services . . . . . . . . . . 267
3.5.1 Authorization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 268
3.5.2 Accreditation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 268
3.5.3 Contractual Agreements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269
3.6 Participation of Private Subjects in the Provision of Social Services . . . . . . . . . . . . . . . 269
3.6.1 Authorization and Accreditation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 270
3.6.2 Contractual Arrangements for the Purchasing of Social Services . . . . . . . . . . 271
3.7 Financing of Long-Term Healthcare and Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . 272
4 Formal Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 274
4.1 Typology of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 274
4.2 Access to Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276
4.2.1 Integrated Home Healthcare Services (ADI) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276
4.2.2 Domestic Aid and Personal Care Services (SAD) . . . . . . . . . . . . . . . . . . . . . . . . . . . 279
4.3 Availability and Intensity of Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
4.3.1 Providers of Home Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280
4.3.2 Integration of ADI and SAD Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 281
4.4 Planning and Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
4.4.1 General Criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
4.4.2 Case Manager . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283
4.4.3 Voucher Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283
4.5 Principles of Service Provision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 284
4.6 Financing and Cost Participation of Beneficiaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 285
5 Semi-Residential Care Facilities: Day Care Centres and Services . . . . . . . . . . . . . . . . . . . . . . . . 286
5.1 Types and Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 286
5.2 Access and Availability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287
5.3 Financing and Cost Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 288
6 Nursing Homes and Residential Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 288
6.1 Typology and Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 289
6.2 Access to Residential Care and Availability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 291
6.3 Residential Care in RSA Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292
6.3.1 Features of RSA Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292
6.3.2 Quality Standards and Quality Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293
6.4 Planning and Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 294
6.5 Financing and Cost Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295
6.5.1 Cost Sharing at the Institutional Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295
6.5.2 Private Co-payment Obligations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296
7 Family Care and Support for Informal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 297
7.1 Care Leave to Assist Severely Handicapped People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 298
7.1.1 Care Leave to Provide Care for Adult Family Members . . . . . . . . . . . . . . . . . . . . 298
7.1.2 Extension of Parental Leave . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 299
7.1.3 Special Protection Under Labour Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300
7.2 Social Services to Support Informal and Migrant Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300
8 Conclusions and Future Prospects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 301
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303
Long-Term Care Benefits and Services in Italy 231
1 Overview
Among EU countries Italy is second—after Germany—in terms of population

ageing. About 13.2 million (or 21.7%) of the population were over 65 years old
in 2015, and their number is expected to increase to more than 20 million people in
2060.1 Despite the significant ageing of the population and the growing number of
persons likely to become dependent on long-term care, Italy is a latecomer in
activating care policies and in responding comprehensively to long-term care
needs linked to demographic transformations. In particular, uniform social services
securing long-term care are still missing. Major target groups of public interven-
tions are either adult persons with severe disabilities below the retirement age, or
senior persons beyond retirement age with specific functional impairments.
Existing public responses to long-term care needs in Italy are extremely
fragmented and stratified: Social services and (cash) benefits are provided by
various institutions on different legal bases. Planning, financing and organizational
responsibilities are distributed among regional and municipal authorities with each
region developing its own institutional models. The most important public actors
organizing the different benefits and services are the local healthcare authorities,
the municipalities, and the National Social Security Institute INPS (Istituto
Nazionale della Previdenza Sociale). The central government level, the regions
and the local authorities participate in the planning and the financing of the social
services. Yet, coordination between the healthcare services and the municipal social
services differs greatly, regionally and locally. The responsibility for providing care
to persons in need of long-term care is still mainly assumed by the family: If long-
term care is not provided by the family members themselves, they bear almost 48%
of the long-term care expenses either by paying for personal care assistants
(assistenti familiari)2 or by bearing the costs for nursing home places. Besides
unemployment, the private costs for long-term care are the second most important
reason for impoverishment in Italy.3
Under the heading of “non autosufficienza” (dependency), persistent demands
for comprehensive reforms regarding social protection in the event of long-term
care have been made for two decades: In 1997, the Onofri reform commission on
the reorganization of the Italian welfare state4 had already suggested to introduce a
national long-term care fund as a financing instrument, along with the development
1
INPS (2016), p. 73. The number of the elderly aged 85+ will even triplicate, from about 1.7
million in 2010 to more than 6 million in 2060.
2
The term “badanti” is considered inappropriate as it was originally applied to persons looking
after animals in the farming sector.
3
Veshi (2013), p. 377; Centre for Economic and International Studies (CEIS) (2013), p. 47; for the
specific poverty risks cf. Luppi (2015), p. 87 ff.
4
The “Commission for the analysis of macro-economic sustainability of social expenditure”
(Commissione per l’analisi delle compatibilit a macroeconomiche della spesa sociale) was
appointed in 1997 under the chairmanship of economist Paolo Onofri to elaborate reform pro-
posals for the Italian welfare state.
232 E.M. Hohnerlein
of local social service networks. While the first National Social Policy Fund was
established in 1997, it took another decade to introduce the National Fund for
Dependency (Fondo nazionale per la non autosufficienza, FNA) by the Budget Law
for 20075; it was the first step in supporting persons with severe disabilities and
elderly persons in need of long-term care, promoting life in dignity in the person’s
familiar surroundings and preventing the risk of inpatient long-term care. The
annual allocations were rather modest (500 million € for a 3-year-period) and
suffered severe cuts in 2011–2012 due to austerity measures imposed by the
economic and financial crisis. A reform proposal of 2007 focusing on the determi-
nation of the social and healthcare services for persons in need of long-term care
was never enacted.6
The few selective reform measures of a national impact adopted in the past decade
implicitly supported the widespread phenomenon of informal family care: the
national collective agreement for home care workers (including personal assistants)
of 2007 which was renewed in 2013, and the regularizations (“sanatorias”) of
migrant care workers employed as personal care assistants in 2009 and again in
2012.7 In particular, the regularization laws repeatedly underpinned the existence of a
private long-term care market with low-paid foreign care assistants that even not very
affluent families from the lower middle class could afford.8 According to various
reports (Network Non Autosufficienza 2009; 2010; 2011; 2013; 2015), the
Italian long-term care model is partly characterized by a lack of comprehensive
institutional reforms against the backdrop of public debt, and partly by the develop-
ment of a home care model where long-term care is provided by foreign care
assistants under the supervision of family members rather than by relatives
themselves.
Another example of the emphasis put on family responsibility rather than on
public responsibility for long-term care needs under the Italian model is a civil law
5
Legge 27 dicembre 2006, n. 296 “Disposizioni per la formazione del bilancio annuale e
pluriennale dello Stato (legge finanziaria 2007)”, Art. 1 (1264).
6
The proposal for a delegated law on long-term care of 2007 (“legge delega al governo in materia
di protezione e cura sociale delle persone non autosufficienti” of 16 November 2007) provided,
among other things, for the introduction of core social services and core social healthcare services
in order to support the development of a network of in-home, inpatient and semi-outpatient social
services as well as so-called single access points (Punti Unici di Accesso, PUA).
Non-governmental reform initiatives presented by members of the Italian Senate (A.S. n. 2827
of 13 July 2011) or by Parliament (A.C. 5319 of 27 June 2012) also failed; for various unsuccessful
reform initiatives cf. Caruso et al. (2013), p. 147, table 2. For reform proposals concerning cash
benefits (“dote di cura”) cf. Istituto per la Ricerca Sociale (IRS) (2013, 2016).
7
Costa (2013), p. 221. The 2007 collective agreement for domestic workers expired in February
2011, and was renewed in 2013. The renewed contract foresees a salary increase, remuneration for
holidays and annual leave; extension of the right to paid leave to undergo training for migrant
domestic workers; and the right to leave the house during the mandatory daily 2-hour break for
live-in workers. The renewed agreement is set to expire in December 2016.
8
See the various acts legalizing the status of foreign nationals employed as family assistants, most
recently D.Lgs. No. 109/2012, cf. Pasquinelli and Rusmini (2013), pp. 97–99.
reform of 2005 which created the legal framework for converting a private home
into a life annuity (reverse mortgages, a loan specifically designed for the elderly)
to finance nursing home costs.9
The healthcare system accounts for a comprehensive part of public expenditure
on long-term care needs in Italy, but the system is subject of consistent saving
measures in public spending which also affected long-term care components.10
Hence, the supply of long-term care services and of integrated social and healthcare
services for an ageing society remains far below the rapidly growing demand, with
respect to both quantity and quality. The distribution of care services still differs
widely from region to region, despite of a national framework law for social
services of 2000 (Law No. 328/2000) which had put special emphasis on social
services for the elderly. A constitutional reform of 2001 had enforced regionaliza-
tion, transferring legislative powers regarding the social (and healthcare) services to
the regions and autonomous provinces.11 The central government retains compe-
tences only for defining the so-called “essential levels of benefits” or core benefits
(livelli essenziali delle prestazioni socio-assistenziali, LEP)12 which, for reasons of
equality, are to be made available in the same way to all citizens throughout the
national territory. Social measures and services to support the elderly population are
explicitly included among these essential levels of benefits (Art. 22 (2) lett. g of
Law No. 328/2000). However, in contrast to the essential levels of benefits granted
within the healthcare system,13 the essential levels of social services have not yet
been determined in a comprehensive way.
Finally in 2015, allocations to the National Fund for Dependency increased
again to an annual volume of 400 million €. More importantly, the perspective to
attain more reliability and continuity in funding has improved in 2016: Permanent
funding has become a structural feature of the fund to support the gradual devel-
opment of more comprehensive protection in the medium term. This novelty is a
chance for more radical changes, namely for defining specific long-term care
services to be guaranteed nation-wide as essential levels, based on the National
9
Decree Law of 30 September 2005 No. 203 on tax evasion, Art. 11-quaterdodies (12), as amended
by the Law of 2 December 2005, No. 248, cf. Long (2011), pp. 207–226 (215).
10
Approximately 43% of the public expenditure on long-term care is spent on the national
attendance allowance and only 11% on other public benefits and services, cf. Veshi (2013),
pp. 373 f.
11
Art. 117 Italian Constitution, as modified by Constitutional Law No. 3/2001; cf. Pioggia (2014),
p. 45 ff. Frego Luppi (2011), pp. 29 ff.
12
Art. 117 (2) lett. m) of the Constitution.
13
D.Lgs. No. 502/1992 defined the “essential levels of healthcare” as all the benefits guaranteed by
the National Health Service, subsequently specified in more detail by the Decree of the President
of the Council of Ministers (D.P.C.M.) of 29 November 2001, confirmed by Art. 54 of Law
No. 289/2002 (legge finanziaria 2003); for details see Pioggia (2014), pp. 59 ff. 67 ff. After several
unsuccessful attempts to revise the LEAs in 2008 and 2010 an updated version has been finally
approved in July 2016, and the new D.P.C.M. of 12 January 2017 will replace the
D.P.C.M. of 2001.
234 E.M. Hohnerlein
Plan for Dependency 2017–2019, and on the decree for the distribution of the FNA
funds in 2016.14
At the same time, the legislator established another separate national fund in
2016, targeted exclusively at persons with a severe handicap not related to old age
or to pathologies linked to senility. The new fund will support people with severe
disabilities up to the age of 64 who cannot rely on family support.15
1.1 Systems Involved
In the absence of a comprehensive protection scheme covering the risk of long-term

care the support available is mainly built upon three pillars: (1) a cash benefit for
persons with specific disabilities (“State attendance allowance”, indennit a di
accompagnamento) which was introduced in 1980 for entirely incapacitated, dis-
abled adults and extended to the elderly in 1988, (2) a modest network of local
healthcare and social services, with the healthcare services providing inpatient care in
nursing homes (Residenze sanitarie assistenziali, RSA) as well as integrated services
with a high proportion of healthcare, and especially (3) the work of the so-called
family assistants (badanti) who provide the major part of the long-term care within
the families. About 1.2 million people depend on this type of private solution which
has facilitated the diffusion of a specific labour market for low-paid and often
low-skilled female migrant care workers. Private expenses for these assistants and
for other long-term care expenditures are tax-deductible to a limited extent.
1.1.1 Monetary Benefits
The most important monetary subsystem is the tax-financed national attendance

allowance (indennit a di accompagnamento) both with respect to the number of
users and with regard to State expenditures. The benefit is granted, independent of
age and income, to persons with certified total disability (100%) physical or mental,
who cannot move around without the permanent aid of an assistant or who are
unable to carry out activities of daily living and therefore require continuous
support. Disabled persons not reaching this threshold of dependency may be
entitled to other cash benefits subject to means-testing. The number of beneficiaries
14
Cf. Decree of the Minister for Labour and Social Policies and other Ministers (decreto
interministeriale) on dependency of 4 August 2016 (Art. 7).
15
Law n. 112 of 22 June 2016 (“Disposizioni in materia di assistenza in favore delle persone con
disabilit
a grave prive del sostegno familiare”) pursues the objective to support social inclusion and
autonomy of persons with a severe disability, namely to avoid institutionalisation and to further
independent living arrangements. To a limited extent, support programmes to assist severely
handicapped people had been addressed by law No. 162 of 1998, but they were not confined to
persons deprived of family assistance.
of this allowance increased from about 1.2 million in 2000 to about 2.2 million in
2015.16 It is neither means-tested nor purpose-related, and is not linked to any
scheme providing services.
Besides, statutory accident insurance, statutory pension insurance, the compen-
sation system for victims of war and other victim compensation schemes also grant
specific benefits and services in the case of long-term care dependency. Within the
social protection schemes for public employees special benefits have been intro-
duced on an experimental basis and with a limited coverage.17
Under regional legislation, further monetary benefits were introduced for long-
term care (assegni di cura and assegni badanti). Contrary to the national attendance
allowance, these benefits are generally tied to a specific purpose.
1.1.2 Inpatient and Outpatient Services
Both the local healthcare services and the municipalities have a share in the
provision of healthcare and social services to persons in need of long-term care.
One of the tasks of the public healthcare system is to accommodate severely
disabled persons either in institutions owned by the health services or in institutions
that are contractually committed to them (RSA).
Public home care services for the elderly include two types of non-residential
services: The Public Healthcare Service provides home healthcare services, called
“integrated domiciliary care” (assistenza domiciliare integrata, ADI), which com-
prise healthcare interventions and social care interventions to be delivered in a
coordinated way according to a personal care plan (piano assistenziale
individualizzato, PAI). The second type of home care services are social home
help services in the field of domestic and personal care tasks managed by the
municipalities (servizi di assistenza domiciliare, SAD). Beneficiaries of this munic-
ipal service are citizens who are completely unable to look after themselves or with
limited physical ability to perform activities of daily living without the help of a
third person. The general legal framework for personal home care is Law
No. 328/2000.18 It is estimated that only about 700,000 individuals receive some
kind of public home care service per year.19
Home care services are subject to regional legislation and therefore differ with
regard to the eligibility criteria, facilities, integration of persons with partial long-
term care dependency and the formalities for claiming long-term care. The much
16
INPS (2016), p. 81. Most recipients (64%) are women, and six out of 10 beneficiaries are older
than 75 years. A similar, but more generous benefit is available for the totally blind.
17
So-called “Home Care Premium” programme, available only in a limited number of municipal-
ities and in case of special contracts stipulated by INPS. For details see INPS (2016), p. 99 f.
18
Framework Law No. 328 of 8 November 2000 on the implementation of the integrated system of
social interventions and services (legge quadro per la realizzazione del sistema integrato di
interventi e servizi sociali).
19
INPS (2016), p. 76.
236 E.M. Hohnerlein
requested integration of social and healthcare services, emphasized in particular in

the field of long-term care, has mostly remained an incomplete patchwork.
Volunteers play an important role in providing care and helping with the
housework. This kind of home help is often organized by non-profit organizations
(Caritas, Red Cross) and financed via the healthcare service. The activities of
volunteers were explicitly acknowledged by the framework Law on social services
No. 328/2000.
1.1.3 Public Support for Family Caregivers
According to statistical data, around 40% of the beneficiaries are assisted exclu-
sively by family caregivers for a total amount of 91 h per week (on average 13 h per
day); another 30% of the beneficiaries rely on a mix of family care giving and
private provision of care (in general migrant care workers), a combination that
assures the highest number of care hours per week. Almost half of the households
use private paid care (47.9%), but only a small portion of those receiving the
attendance allowance will get any additional services.20
As long-term care is provided mainly in the family or in the domestic setting,
labour law entitlements regarding a family caregiver’s leave from work are an
important item of the care legislation. The range of relatives and family members
entitled to a paid care period of up to 2 years was repeatedly extended by the Italian
Constitutional Court. Overall expenditure to cover the provision of paid leave in the
public and the private sector amounted to 3.1 billion € in 2015.21 Moreover, certain
leave periods granted to a family caregiver are recognized as contribution periods
under pension legislation.22
1.1.4 Regional Legislation
The provision of long-term care services and some of the supplementary monetary
benefits are based on regional legislation.23 Meanwhile some regions have
established policies for elder care and long-term care for the elderly as an indepen-
dent socio-political sector which is supported by specific regional care funds with
varying objectives. Some of the regions have introduced “cash for care” benefits to
cover long-term care needs; these benefits can be restricted to elder care, but they
20
Costa (2013), p. 223.
21
INPS (2016), p. 79.
22
Art. 33 (3) Law No. 104/1992, Art. 42 (5-ter) D.Lgs. No. 151/2001 as modified by D.Lgs.
No. 119/2011.
23
Regions as political entities enjoy increased autonomy in social policy legislation following the
constitutional reform of 2001. Strong regional disparities persist due to diverse socio-economic
structures and administrative traditions dating back to the Italian unification in 1861 and the
inability to implement a sturdy, unitary public administration.
may also cover long-term care on grounds of disability. The scope of these
interventions is multifaceted, with region-specific priorities as to the relation
between cash benefits and care services, the relation between residential and
home care series, and the management of services. Based on these different
priorities, the following regional models have been identified: (1) the residential
care model with significant expansion of residential care together with a simulta-
neous development of municipal home help services (Autonomous Province of
Trento and Aosta Valley); (2) the model of intensive development of the home help
services (Emilia-Romagna, Friuli); (3) the southern Italian model with a focus on
“cash for care”, showing a high proportion of recipients of the State attendance
allowance (above the national average) whereas coverage of residential care is very
limited (Calabria, Campania, Apulia, Sicily, Sardinia); (4) the rather unique model
of Umbria with a very high incidence of the national attendance allowance among
the elderly, in combination with many home healthcare services but very few
municipal home help services and very few residential services; (5) the mixed
model of close-to-average provision of home care services (both healthcare and
personal care and home help), combined either with an orientation towards cash-
for-care (Abruzzo, Basilicata, Lazio, Marche, Molise) or with an orientation
towards residential care (Liguria, Lombardy, Piedmont, Tuscany, Veneto).24
1.2 Concepts and Definitions of Long-Term Care

Dependency
There is no comprehensive, uniform legal concept of long-term care dependency in

Italy.
Long-term care dependency is differently defined and assessed, according to the
context of regulation. Concepts of long-term care dependency originally developed
within the welfare system for persons with disabilities which recognized restricted
personal autonomy as a cause of vulnerability justifying support beyond the mere
compensation for loss of income. This welfare scheme originated in the 1960s and
was meant to promote labour market integration of adults whose earning capacities
were reduced due to diseases and impairments. The special welfare system for
persons with “civilian invalidity” (Law No. 118/1971) granted social assistance to
people who were not covered by the social insurance scheme for invalidity and who
were partially or entirely incapacitated for work. Hence, the assessment of this
“civilian” disability was closely linked to the remaining capacity for work. Later,
coverage was extended to people aged over 65 and to minors. The disability
24
For the elaboration of these different cluster models cf. Barbabella et al. (2013b), pp. 30 ff.
238 E.M. Hohnerlein
framework legislation (Law No. 104/1992)25 introduced a different concept of

long-term care dependency which was based on the severity of disability regardless
of a person’s working capacity. The definition of different degrees of disability
(most severe, severe and normal disability) is increasingly important as public
interventions in cases of dependency tend to rely on gradual implementation,
concentrating on most severe forms of disability and related care needs in view
of limited financial resources.26 To overcome regional disparities in assessing the
most severe disabilities different government levels and trade unions have agreed in
2016 to modify in a first step the definition of the most severely disabled by
adopting uniform assessment criteria and by introducing a safeguard clause for
those severely disabled that are not encompassed explicitly but suffer from severe
functional limitations. This gradual approach is meant as a pathway to finally reach
a definition on essential levels for rights in the provision of long-term care benefits
and services.27
1.2.1 Definitions at National Level
In general, the various benefits systems define their respective personal and material
scope of application independently, although the concept of a limited or
non-existent self-sufficiency (non autosufficienza) has proven to be a general
point of reference. According to the case law of the Italian Court of Cassation
(No. 1268/2005), the essential criteria for a lack of self-sufficiency are the need of
permanent support by an assistant or the inability to perform the activities of daily
living autonomously and independently, i.e. without any help from another person.
The need for support with the activities of daily living must be permanent.
25
Framework Law No. 104/1992 on the social support and integration and on the rights of persons
with handicap (legge-quadro per l’assistenza, l’integrazione sociale e i diritti delle persone
handicappate).
26
This approach has been adopted in the Decree of the Ministry of Labour and Social Affairs of
14 May 2015 on the territorial allocation of the funds available under the National Dependency
Fund (FNA) which gave priority to persons with most severe disabilities (“disabilita gravissima”).
It refers to persons in condition of vital dependency that require continuous assistance at home and
social and healthcare monitoring for 24 h a day, in view of complex needs due to severe
pathological conditions, susceptible to compromise respiratory functions, nutrition, the state of
conscience, and who lack autonomy in moving around and/or at any rate require watchful
assistance by a third party in order to safeguard their physical and psychical integrity. 40% of
FNA resources should be allocated to interventions for persons in such most severe conditions.
27
See the decree of the Minister for Labour and Social Affairs and other Ministries of 4 August
2016 on long-term care interventions, including the allocation of the resources of the FNA in 2016
and later on.
1.2.1.1 National Attendance Allowance
The attendance allowance (indennit a di accompagnamento) is linked to the

so-called “civilian invalidity”. The benefit is granted in case of complete incapacity
for work (100%), which goes beyond the degree of reduced earning capacity
required to draw on an invalidity pension. A distinction is made between recipients
of working age (18–65 years of age) and recipients aged over 65 or under the age of
18. Persons aged over 65 are entitled to the allowance if they cannot move without
the help from other persons or if they cannot perform the activities of daily living
autonomously and are therefore in constant need of personal help or care. In other
words, these persons either have a problem with their mobility or with the activities
of daily living (such as eating or cooking, personal hygiene, dressing, etc.) for
which they require the assistance of other people. Children with disabilities under
the age of 18, are covered by the benefit if they have permanent difficulties in
performing the tasks and functions corresponding to their age (difficolt a persistenti
a svolgere i compiti e le funzioni della loro eta).
1.2.1.2 Social Insurance Schemes
Within the social insurance schemes, too, the concept of long-term care dependency
is based on the lack of mobility and the dependence on other persons’ help to cope
with the activities of daily living. The work accident insurance scheme which has a
narrowly defined scope of application as to the risks and persons covered provides
for a supplementary allowance for constant personal assistance to those insured
receiving pensions for incapacity for work.28 The entitlement criteria are set out in
an appendix to the law on statutory accident at work insurance. The scheme covers
not only physical impairments such as the loss of limbs or the loss of vision, but
extends to reductions in the intellectual abilities of a person which may result in
serious disruptions of the latter’s social life.29
The Italian statutory pension insurance also provides for a specific attendance
allowance: Recipients of an invalidity pension under the statutory pension insur-
ance are entitled to a monthly allowance for constant personal assistance if they
cannot move around without another person’s help or if they cannot accomplish the
activities of daily living autonomously.30
28
Art. 66 Consolidated Law on the Social Insurance on Work Accidents and Occupational
Diseases No. 1124/1965 (Testo unico delle disposizioni per l’assicurazione obbligatoria contro
gli infortuni sul lavoro e le malattie professionali).
29
Cf. Annex to T.U. No. 1124/1965.
30
Assegno mensile per l’assistenza personale e continuativa (Art. 5 Law No. 222/1984).
240 E.M. Hohnerlein
1.2.1.3 Disability Law
Framework Law No. 104/1992 on care, social integration and the rights of persons
with disabilities deals with long-term care dependency in the context of the
definition of severe disability. It established particular rights for persons with severe
disabilities, and also specific work-related leave rights of their relatives towards the
employer. Hence, a disability is recognised as a severe disability if the personal
autonomy has been reduced due to a single or a multiple disability in relation to the
person’s age, so that permanent, continuous, comprehensive care is required in the
personal sphere or in the field of the person’s relations (Art. 3 (1) of Law
No. 104/1992). This definition was also used for the introduction of the National
Dependency Fund (FNA).31
1.2.1.4 Private Insurance Law
Private insurance instruments developed their own definition of long-term care,

classifying long-term care according to certain degrees of severity, based on the
need of support for the activities of daily living.32 A person is considered to be in
need of long-term care if he/she requires help in order to be able to cope with certain
recurrent activities of daily living (such as personal hygiene, nutrition, mobility or
housekeeping chores). The benefits and services of private insurance generally also
cover the need of support due to mental or emotional illnesses. However, nearly all
private insurance contracts provide for benefits only if a substantial degree of
dependency has been established, e.g. the loss of either three out of four activities
of daily living or four out of six activities, with dementia diseases also being taken
into account.33
1.2.2 Definitions in Regional Legislation
Most regions have adopted regulations on measures to be taken in the event of long-
term care dependency, and have in many cases also introduced a regional care fund
or particular benefits for persons in need of long-term care and their families. That
is why the regional laws and other legal acts contain further heterogeneous defini-
tions of long-term dependency, with the regions often leaving some room to the
municipalities, the local healthcare institutions, but also to the assessment
31
Law No. 296 of 27 December 2006, Art. 1 (1264) (Legge finanziaria 2007).
32
ISVAP (2003).
33
Rebba (2006), p. 411. The same criteria are used in occupational healthcare funds based on
collective agreements that cover the risk of loss of personal autonomy: Cf. e.g. the National
Healthcare Fund FASCHIM established by collective agreement for the chemical industry sector,
(CCNL) of 12 February 2002.
authorities (geriatric, multidisciplinary, or authorities assessing disabilities)

allowing for individual approaches regarding the assessment of long-term care.34
Some regions have restricted access to benefits in case of dependency to specific
age limits (65 years in Emilia-Romagna; 75 years in Lombardy; 80 years in
Umbria) while other regions provide long-term care benefits irrespective of age.
In contrast to the national attendance allowance granted within the system of
civilian invalidity, the regional legal regulations generally differentiate according
to varied degrees of care needs or to different degrees of severe disability. The
assessment of the degree of severity differs between the regions and follows
varying classification systems, with the degree of autonomy and the person’s health
condition being given priority, and the so-called instrumental abilities playing a
minor role.35 As to the assessment procedures, since the creation of the National
Fund for Dependency (FNA) the assessment is based in general on a
multidimensional approach involving different disciplines.
The Provincial Law of Bolzano of 2007 on measures to secure long-term care
shall serve as an example of an explicit definition of long-term care dependency at a
sub-State level. The law reads as follows: “According to this law, persons are in
need of long-term care who, permanently or to a considerable extent, are unable,
due to an illness or a physical, intellectual or mental disability, to perform the
activities of daily living in the fields of nutrition, personal hygiene, elimination,
mobility, psychosocial life and housekeeping chores, and therefore regularly
require assistance from others for more than two hours a day, on a weekly average,
with taking into account the possibility of improving those persons’ autonomy by
technical aids.”36 The basic requirements for a relevant need of assistance and long-
term care are (a) at least one care-relevant diagnosis owing to an illness or a
disability (b) a functional restriction based thereon, in at least one area of the
relevant activities of daily living, and (c) a major and permanent dysfunction.37
Depending on the needs of long-term care, four care levels38 are to be distinguished.
The levels are linked to monthly benefits ranging from a minimum of 555 € to a
maximum of 1800 €.39
The regions Friuli, Lazio, Liguria, Piedmont, Sardinia and the Autonomous
Province of Trento connect the definition of long-term care dependency to the
ability to autonomously perform the daily living activities, to a person’s relations,
34
Cf. Banchero (2009), pp. 108 f., table 1.
35
Cf. the examples cited by Tediosi and Gabriele (2010), 1.2.
36
Art. 2 (1) Provincial Law (Legge Provinciale, LP) No. 9 of 12 October 2007 of the Autonomous
Province of Bolzano in connection with Resolution No. 73 of 28 January 2014 of the Provincial
Government on criteria concerning the acknowledgement of long-term care dependency, the
payment of care allowance and the administration of the long-term care fund.
37
Art. 2 Resolution No. 73 of 28 January 2014 of the Provincial Government.
38
Daily long-term care needs in level 1 ¼ 2–4 h, in level 2 ¼ 4–6 h, in level 3 ¼ 6–8 h, in level
4 ¼ more than 8 h.
39
Art. 8 (2) of LP (Bolzano) 9/2007; the minimum benefit has been increased to 555 € as of
January 2016.
242 E.M. Hohnerlein
and to mobility.40 Some regions dispense with an explicit definition of long-term

care dependency and concentrate on the multidimensional methods of assessment
(Emilia-Romagna, Lombardy and Veneto, for instance). In some cases eligibility
for certain social benefits and services provided to persons in need of long-term care
is merely determined on the basis of the presence of a severe illness or disability, a
considerable need of help from family members or the need of daily support
(Abruzzo, Basilicata, Campania and Apulia).41
1.3 Statistics
The statistical recording of long-term care dependency in Italy is a difficult task due
to the various concepts used by different institutions and benefits systems. The
Italian National Institute of Statistics (ISTAT) resorts to its own definition, which is
derived mainly from disability related to persons with functional impairments or
limitations.42 For the purposes of national statistics, a person with functional
limitations is somebody who declares to have difficulties in at least one out of
several dimensions: confinement to bed, to the seat or to the home; difficulties in
mobility, daily activities, or communication.43 Social policy experts usually differ-
entiate between persons in a situation of non-self-sufficiency in old-age (65+) and
persons with severe disabilities of younger ages up to 64.
According to ISTAT survey data for 2015, 11.2% of the elderly (1.4 million
persons) had serious difficulties in at least one activity of daily living (ADL), and
1.2 million of them were aged 75 or older. The vast majority of the elderly with
restricted autonomy, are living at home, and about 210,000 in institutional care. At
the same time, care at home is provided to 674,000 young and adult persons up to
64 affected by a severe disability, and 51,000 of severely disabled persons are
receiving inpatient care in an institutional setting.44 With respect to disabilities
restricting autonomy in daily domestic activities (Instrumental Activities of Daily
Living, IADL), 2013 ISTAT survey data for persons aged 15 years or older indicate
that the overall number of persons in need of long-term care due to such limitations
40
The Friuli region care benefit requires the condition of severe dependency defined as the
impossibility to perform at least 2 Activities of Daily Living (ADL), based on the ADL score of
Katz; the case of severe dementia is defined as “the condition of dementia of at least second
degree, assessed according to the Clinical Dementia Rating Scale (CDR)”, Presidential Decree of
the Region No. 7/2015, Art. 5.
41
For the legal foundations of different regional approaches cf. Banchero (2009), p. 108 f., table
1, p. 110.
42
ISTAT thus follows the modernized concept of disability and the approach adopted by the WHO
with its International Classification of Functioning, Disability and Health.
43
ISTAT (2014b), p. 2f.
44
Figures from ISTAT (2017), and Pasquinelli et al. (2016), p. 49.
Table 1 Coverage rate of the elderly population (65+) receiving long-term care benefits (percentage)a
2010 2011 2012 2013
Attendance allowance (IA) 12.7% 12.6% 11.4% 12%
Home care services 5.5% 5.5% 5.6% 5%
(servizi domiciliari) – ADI ¼ 4.1% – ADI ¼ 4.1% – ADI ¼ 4.3%
– SAD ¼ 1.4% – SAD ¼ 1.3%
Residential care 2.5% 2.3% 2.1%
(servizi residenziali)
a
Source: Own compilation, based on N.N.A. (ed) (2015) p. 24, 59; IRS (2016)
amounts to about 4.5 million persons, with about 4 million of them aged 65 and
over.45 The number of persons suffering from dementia diseases is estimated at
900,000 to one million.46
Between 2007 and 2014, public expenditure for long-term care rose from 1.13%
of GDP to 1.27% of GDP.47 In 2015, a total amount of 13.6 billion € was spent on
the national attendance allowance, compared to 12.7 billion € in 2011. Since about
2009, the number of beneficiaries of this attendance allowance has remained almost
stable, but even if expenditure shows very modest increases, mainly due to adjust-
ment rules—the coverage rate of beneficiaries is decreasing. The decline is partly
due to the changes in the approval procedure introduced in 2009, and partly to
extraordinary reassessment measures (Law No. 133/2008, Art. 80).48 The average
coverage rate of the attendance allowance among the elderly population was 12.0%
in 2013 (table 1). It varies significantly between the different regions (between very
low rates of 7.2% in Trentino-Alto Adige and peaks of 17.9% in Calabria, 16.8% in
Umbria and 15.8% in Campania).49
In general, all interventions and services for long-term care needs determined by
regional policies display significant differences, reflecting the common divide
between the northern and the southern parts of Italy.50 With the exception of
home care services related to the health care system, average coverage rates
among the elderly declined for all types of services after 2010 (Table 1).
45
ISTAT (2015a; 2017); for more differentiated estimations cf. Chiatti et al. (2011), p. 17.
46
Bosco (2017), p. 202.
47
Gori and Lamura (2009), p. 25; N.N.A. (2015), p. 31. However, different sources provide
different figures based on the types of benefits and services included. INPS (2016), p. 75, reports
a 1.8% share of long-term care expenditure in GDP (2013), based on European survey data,
whereas INPS institutional data underpin a 2.19% share in GDP in 2014/2015, the latter including
expenditure for paid care leave under social security (in general disregarded by European sources),
cf. INPS (2016), p. 77.
48
Barbabella et al. (2013a), p. 23.
49
Barbabella et al. (2015), p. 28; Barbabella et al. (2013a), p. 24.
50
For a detailed analysis of long-term care policies in 5 regions—Liguria, Lombardy, Veneto,
Emilia-Romagna and Tuscany—that managed to develop and extend coverage in different areas of
this policy sector cf. Gori and Rusmini (2015a); for the regional disparities in usage and expen-
diture cf. Banchero (2015), p. 193 ff.
244 E.M. Hohnerlein
Formal home care services are used by about 5% of the elderly with long-term care
needs. The integrated home care services provided by the local healthcare units ASL
(ADI) increased their coverage rate from 2.9 to 4.3% of the population aged 65 or over
2005–2012, with 13 regions below the average rate, and a peak of 11.8% attained in
Emilia-Romagna. The intensity of the ADI services is on average only 21 h per year
for users aged 65+, with large regional disparities (ranging from 6 h per year in Friuli,
to 81 h in Molise). In contrast to the ADI services, coverage by municipal home care
services (SAD) has decreased from 1.6% to 1.3% in the period of 2005–2012, with
strong regional and intraregional disparities. Substantial coverage rates of 5.3% to
2.3% are reported for four regions (Aosta Valley, Autonomous Province of Trento,
Sardinia and Friuli). Likewise, the average expenditure per user reflects regional
disparities, ranging from a peak of 4626 € per year in Aosta Valley to very modest
support levels (below 1300 €) in Calabria, Molise, Piedmont, and Veneto.51
The coverage of residential care services for the population aged 65+ has
decreased since 2010, with an average user rate of 1.7% among the elderly in
2012. In addition to the places in nursing care institutions persons needing long-
term care may be placed also in post-acute hospital care following dismissal from
hospital. The hospital sector may also provide in-patient care in rehabilitation or in
long-term care treatment (lungodegenza). The overall coverage rate in terms of
number of beds available to inmates aged 65 or older has also decreased from
2.57% to 2.2% in the period 2009–2012.52 In 2013, on average 20 out of 1000
persons aged 75+ were admitted to in-patient rehabilitation services, 12 out of 1000
to long-term care in hospital.53
2 Monetary Benefits
2.1 National Attendance Allowance
2.1.1 Entitlement Criteria
a di accompagnamento) constitutes
The national attendance allowance (indennit
the major cash benefit in the event of severe long-term care dependency.
It was introduced in 1980 for persons who had been granted the status of
“civilian invalidity” for being 100% incapacitated for work due to physical
51
Barbabella et al. (2015), p. 21 f.; Carrino (2015), p. 137 ff.
52
All northern regions attain coverage rates above the national average (with peaks between 4.38%
and 3.5% in Trentino-South Tyrol, Piedmont, Aosta Valley and Friuli), while 12 out of the
20 Italian regions, including all southern regions, range below the national average. For details
on the disparities cf. Carrino (2015), p. 139 ff.
53
Barbabella et al. (2015), p. 23 ff.
or mental impairment.54 In 1988, the benefit was extended to persons aged 65 or

older.55 The benefit is granted for two different reasons: (1) when a person lacks the
ability to move around and particularly to leave the home autonomously, and
(2) when a person is not able to perform the general activities of daily living (like
eating, personal hygiene, dressing, etc) autonomously.56 The criteria for defining the
relevant activities of daily living are not specified by law. The eligibility criteria are
deemed to privilege physical impairment rather than cognitive or mental disorders.57
Children under the age of 18 are entitled to the attendance allowance if they have
persistent difficulties in accomplishing the tasks and functions corresponding to
their age. The cash benefit is not restricted by age and is not subject to any means-
testing. Although the use of the benefit is not restricted to any specific purpose, it is
meant to encourage the closer family to directly or indirectly provide care for a
relative in need of long-term care. This also includes the provision of long-term care
to persons with terminal illnesses, with the exception of end-of-life care. An
extensive collection of case law has developed with respect to the group of persons
covered and the extent of long-term care dependency. For example, children of
crèche and nursery school age are entitled to the care benefit, if due to a certain
disease pattern, the extent and form of the care they need go far beyond what is
necessary for healthy children.58 The “permanence” requirement of long-term care
needs is often a source of legal dispute. According to the judiciary, the criteria of
permanence for granting the benefit is met also in cases when active and passive
needs of support alternate. It is sufficient if the need for support arises during the day
each time a certain activity has to be performed, without this need having to occur
permanently. Persons suffering from epilepsy are also entitled to the benefit even if
the epileptic attacks are only sporadic.59 The essential criterion is the need for
comprehensive and permanent long-term care; a slight or only temporary need of
care, as would be the case for cancer patients during chemotherapy, for instance, is
not sufficient.60 Elderly people who are still independent in their primary functions,
but have lost their full mental abilities, may be entitled to the allowance.61
54
An invalidity is considered to be “civilian” if it does not result from service, war, or work, and
therefore does not enjoying protection under any other social security scheme.
55
Art. 1–3 of Law No. 18 of 11 February 1980 (“Indennit a di accompagnamento agli invalidi civili
totalmente inabili”), modified by Art. 1–2 of Law No. 508/1988 (“Norme integrative in materia di
assistenza economica agli invalidi civili, ai ciechi civili ed ai sordomuti”), and Legislative Decree
(D.Lgs.) No. 509/1998. For details s. Mesiti (2014), p. 400.
56
The prerequisites do not have to be cumulative. Also persons who are able to perform the
activities of daily living in their own surroundings but who cannot leave the house independently
are entitled to the attendance allowance, cf. Cass. sentence (sent.) No. 8060/2004. With respect to
the incapacity to perform the activities of daily living, entitlement to the allowance has also been
recognized in the case of persons with Down Syndrome.
57
Costa (2013), p. 230.
58
Cass. Sez. Un., sent. No. 11329/1991; No. 1377/2003; No. 11525/2006.
59
Cass. sent. No. 21761/2004.
60
Cass. sent. No. 25569/2008; Cass. sent. No. 20003 and 21281/2010.
61
Cass. sent. No. 667/2002; No. 1268/2005.
246 E.M. Hohnerlein
A separate attendance allowance scheme does exist for blind persons, if they
suffer from total blindness or if their residual vision is not exceeding one-twentieth
in both eyes with any possible correction, due to a congenital or contracted cause
which must not originate from war or industrial accident or occupational diseases.
Other situations of partially limited vision together with other impairments may be
a factor to open up access to the general attendance allowance where appropriate.62
The special attendance allowances for the blind are not means-tested and not related
to any income ceiling. Benefit entitlement is excluded if the person dependent on
long-term care is accommodated in a public institution free of charge.63 Free of
charge means that the entire costs are covered by public funds or that co-payment
for services is only required for services of a better quality than the basic quality.
Admission of the dependent person to a public hospital does not preclude the
attendance allowance during the period of hospitalization if not all the assistance
needed for accomplishing daily tasks is guaranteed by the hospital.64
The attendance allowance cannot be awarded together with similar benefits
granted pursuant to war victims’ compensation law or by other benefits systems
(such as statutory pension insurance or industrial accident insurance). The benefi-
ciaries may opt for the most advantageous benefit.65
2.1.2 Benefit Amount
The national attendance allowance is a flat-rate benefit which amounted to 515.43 €

per month with 12 payments being made per year (2017). The benefit which is
adjusted annually does not make any distinction with regard to the degree of long-
term care dependency and is not means-tested. Reform proposals attempt to replace
the uniform flat rate by a scheme of three different amounts that vary according to
different health conditions.66
Some differentiations are made on behalf of blind persons. The allowance for the
totally blind is much higher and amounts to 911.53 € per month (2017), subject to
annual adjustments, whereas the special attendance allowance for the partially blind
with an impaired visual function of not more than 1/20 on both eyes67 amounts to
62
Corte costituzionale, sent. No. 346/1989; Cass. sent. No. 14339/2001.
63
This restriction generally only applies in the case of inpatient accommodation for a period of at
least 30 days. Under certain conditions, entitlement to the allowance may exist also in the case of
accommodation in public care institutions, Cass. sent. No. 25764/2008. Accommodation in a
day-care centre does not conflict with the receipt of the national attendance allowance.
64
See Cass., sent. No. 2270 of 2.2.2007.
65
For option rights cf. Ministerial Decree (D.M.) of 31 October 1992, No. 533; Art. 12 Law
No. 412/1992.
66
A differentiated cash benefit (“dote di cura”) at three levels (300, 600 or 800 € per month) has
been reproposed in 2016 as part of an ambitious welfare reform project, cf. Pasquinelli et al.
(2016), p. 49 ff. for past reform debates s. Arlotti (2012), p. 555; Costa (2011), p. 69.
67
Law No. 508/1988; Law No. 289/1990.
only 209 € per month (2017). Much like the general attendance allowance the
benefit is paid for 12 months, is not subject to any income threshold, and is not tied
to a specific purpose or use.68
2.1.3 Assessment of Long-Term Care Dependency
A medical commission is in charge of determining the medical prerequisites

according to which an entitlement to the attendance allowance is established within
the protection scheme of civilian invalidity. This commission is set up with the
local healthcare institution ASL. Generally, the commission consists of three
physicians of the healthcare service, one medical examiner appointed by the
disability associations or other special interest groups and, since 2010, an additional
physician from the social insurance institution INPS.69 Since the 2009 reform, the
final assessment is always to be made by the social insurance institution INPS.70
The assessment criteria for determining long-term care dependency are, how-
ever, not standardized, so that the probability of being granted the benefit varies
greatly from region to region.71 The proportion of the elderly population receiving
the attendance allowance is exceptionally high in the southern regions, a fact which
cannot be explained by epidemiological factors, i.e. by an actually increased long-
term care dependency of the population of the southern regions.72 In 2010, the INPS
issued internal interpretation guidelines making the medical criteria more stringent
according to which people were classified as being dependent on long-term care in
order to be granted attendance allowance.73 In terms of content, the new guidelines
are based on a draft law of 2010 that had been rejected in the parliamentary process
3 months earlier.74 According to these new guidelines, only those activities are
68
Art. 1 of Law No. 508/1988 (Norme integrative in materia di assistenza economica agli invalidi
civili, ai ciechi civili ed ai sordomuti). For totally blind minors affected by multiple disabilities the
allowance is increased by 45% (Art. 5-bis of Law No. 508/1988). The amounts of all benefits
related to civilian invalidity as well as any income limits that may apply are published annually in
a circular by INPS; for 2017 s. circular no. 8 of 17 January 2017, annex No. 3, p. 26 ff.
69
Law No. 295/1990, Art. 1, as modified by Art. 20 Law No. 102/2009. However, on 1 January
2012, the obligation for a physician from the social insurance authority to be present was not
observed in more than 50% of the cases. Cf. Corte dei Conti, Determinazione 91/2012. The
average waiting period regarding the first appointment with the classification committee is
8 months.
70
Art. 20 of Law No. 102/2009.
71
As to the problems regarding the assessment criteria within the context of civilian invalidity
from a medico-legal viewpoint see Cembrani et al. (2007).
72
Gori and Pelliccia (2013), p. 53 (esp. fn 9). In 2013 coverage rates ranged from 7.2% of
beneficiaries aged 65+ in the Trentino-South Tyrol provinces to 17.9% in Calabria (and exces-
sively 16.8% in the central region of Umbria), cf. Barbabella et al. (2015), p. 16 ff.
73
Linee Guida operative in invalidita civile, Internal Communication of INPS, 20 September 2010.
74
Amendment presented during the debates on the “anti-crisis” interventions of Decree Law (D.L.)
No. 78/2010, converted into Law No. 122/2010.
248 E.M. Hohnerlein
considered to be “activities of daily living” that ensure personal autonomy in the

person’s home at a fundamental level. Lack of autonomy in activities outside the
home are seen as too far-reaching to be taken into account for the assessment.
Moreover, the INPS recommends the use of the Katz ADL assessment scale or the
Barthel Index, which are confined to autonomy in the most fundamental activities.
Since then, the number of persons being granted attendance allowance has not
increased any further and expenditure growth has been slowed.75
If long-term care dependency is due to a physical impairment, a self-declaration
has to be provided on a yearly basis stating that the conditions establishing benefit
entitlement still exist.76
2.1.4 Organization and Financing
The organizational responsibility is assigned to INPS which also administers and

pays out all the other benefits granted to persons with disabilities. The State
attendance allowance is financed from general tax revenues. Overall expenditure
amounted to 13.6 billion € per year in 2015, 80% of which related to senior citizens
aged over 65 years.77
2.2 Pensions and Allowances for the Civilian Disabled

and Invalids
2.2.1 Special Benefits for Adults with Reduced Earning Capacities
Disabled adults of working age—between 18 years and 65 years plus 3 months—

with reduced earning capacities are entitled to means-tested minimum benefits,
subject to certain degrees of invalidity and income limits. The monthly allowance
under the “civilian” disability scheme is granted for individuals with a degree of
invalidity of at least 74%, and the disability pension is granted for individuals with
100% invalidity.78 The cash benefits amounted to 279 € in 2015/2016 with
13 installments for the allowance and the pension. The yearly income limit in
case of total invalidity was 16,532 € in 2015/2016, 4800 € in case of partial
invalidity.
75
Cf. Barbabella et al. (2013a), p. 23, table 5.
76
Persons who are dependent on long-term care due to a mental or psychological impairment are
exempt from that requirement for lifetime on presentation of an appropriate medical certificate,
cf. Art. 1 (254) of Law No. 662/1996.
77
INPS (2016), p. 216.
78
For pensions and allowances for the civilian disabled or invalids cf. Laws No. 118/1971,
No. 18/1980 and No. 508/1988.
2.2.2 Special Benefits for Children and Adolescents with Disabilities
The cash allowance (indennit a di frequenza)79 for children below the age of
18 years is not granted with the purpose of guaranteeing a minimum assistance
level as for the adults, but in order to facilitate participation in curative or rehabil-
itative services provided outside the home (in day centres etc.) and participation in
educational activities at public or private schools of any grade (including nursery
schools and creches80). It is aimed at children having persistent difficulties to
perform tasks and functions proper to their age, or children facing a substantial
loss of hearing ability of more than 60 decibel in the better hearing ear. The benefit
amount is the same as in case of partial invalidity (279 € per month in 2015/2016,
adjusted annually) and the same rather strict personal income limits apply (4800 €
of annual income in 2015). The benefit is not paid throughout the year, but only
during the periods of attending rehabilitation or classes, up to 1 month after the
courses or treatments outside the home have finished, and it cannot be cumulated
with the national attendance allowance.
2.2.3 Benefits for Particular Forms of Disability
Specific benefits are granted in case of complete or partial blindness, severe hearing
impairments, and in case of multiple disabilities. Completely blind persons aged
18 or older and not living in residential care are entitled to a special social
pension,81 subject to an income limit (of 16,532 € in 2015/2016) and amounting
to 302 € per month (2015/2016). If persons affected by complete blindness are
living in a residential institution their monthly pension is reduced from 302 to 279 €
(2015/2016) which corresponds to other social pensions granted under the scheme
for “civilian invalids”. The reduced pension amount also applies in case of partial
blindness and of severe hearing impairment. However, there are additional cash
benefits in case of specific types of sensorial impairment that are not means-tested.
Persons who suffer from a congenital or acquired deafness during developmental
age (until the age of 12) are entitled to a so-called communication allowance
(indennita di communicazione)82 which amounted to 256 € per month in 2017.
The benefit is not means-tested and is only conditional on a specifically defined
hearing impairment.
The blind and the deaf-mute affected by additional impairments are entitled to
cumulate the amounts of the single benefits applicable.83 The case of the double
79
Law No. 289/1990.
80
Creches (asili nido) have been recognized as relevant educational services for the purpose of the
benefit by the Constitutional Court, sent. No. 467/2002.
81
Law No. 382/1970.
82
Law No. 508/1988.
83
The right to this aggregation has been introduced by Law No. 429/1991.
250 E.M. Hohnerlein
impairment of blindness and deafness has been recognized as a unique specific

disability.84
2.3 Allowances Under Privileged Social Protection Schemes
2.3.1 Statutory Work Accident Insurance
The occupational accident insurance has a limited personal and material scope of
application. The categories of workers covered are basically those that perform
certain hazardous tasks.85 Within the framework of the statutory occupational
accident insurance system, a benefit is provided for continuous (permanent) per-
sonal assistance that can be classified as a support for long-term care dependency.86
The benefit is available to victims of an occupational accident or occupational
disease. Before 2007, the benefit required a permanent absolute incapacity for
work, assessed according to the tables in the annex to the accident insurance law,
and the necessity of a continuous personal assistance, due to one of the pathological
conditions resulting from the occupational accident or desease.87 Since 2007, the
benefit does not require a permanent absolute incapacity for work any longer but
only the necessity for continuous personal help. The entitlement is based on certain
types of disability specified in an annex to the accident insurance law. These
include significantly reduced vision, loss of 9 fingers including both thumbs,
injuries of the central nervous system (CNS) with complete paralysis of both
legs, amputation of both legs, loss of one hand and both feet, severe change in
mental abilities as well as illnesses or impairments that require continuous bed-rest.
Access to the benefit has been extended by case law. The Corte di Cassazione
qualified it as an autonomous benefit which may be requested independently from
the pension for complete incapacity for work.88 Furthermore, the Constitutional
Court decided that the table of impairments should be given an extensive interpre-
tation and benefit entitlement must be granted not only in the cases explicitly
mentioned in the table but should comprise the impossibility to walk without the
permanent help of another person.89 The monthly benefit amounted to 533 € as of
84
Law No. 107/2010, in force since 14 July 2010.
85
Cf. Cinelli (2015), pp. 490 ff.; the injury must have occurred at work by a violent cause in
connection with a risk related to the performed activity. Accidents at work that do not meet
eligibility criteria of the work accident scheme may be covered by the statutory pension insurance,
cf. Hohnerlein (1998), pp. 234 ff., pp. 247 ff.
86
Assegno per l’assistenza personale continuativa, Art. 66, 76 and 218 of Consolidated Law on
Work Accidents (T.U.) No. 1124 of 13 June 1965, as amended by D.Lgs. No. 38/2000.
87
Art. 1 (782) Law No. 296/2006.
88
Cass. sent. No. 4069/1990; Cass. No. 12215/1998.
89
Corte costituzionale, sent. No. 216/1991.
July 2015, with annual adjustments.90 It is thus slightly higher than the national
attendance allowance in case of civilian invalidity.
2.3.2 Statutory Pension Insurance
Statutory invalidity pension insurance also contains regulations on care benefits.

Persons receiving an invalidity pension for permanent and absolute incapacity for
work under the pension insurance are entitled to personal care support if they
cannot move around without another person’s help or if they cannot perform the
vital functions of daily living autonomously (Art. 5 of Law No. 222/1984).91 This
personal care support is paid at the same rate as the benefit for continuous personal
assistance under the statutory accident at work insurance (533 € per month as of
July 2015). Entitlement to this benefit is suspended for every day of hospitalization
at the total expenses of public administration.
2.3.3 Indemnization Schemes for Victims of War and Other Victims
The indemnization scheme for war victims affected by particularly severe impair-
ments (and therefore classified as “grand invalids”) provides for two benefits to
cope with the severe health condition: a so-called “super invalidity” benefit
(assegno di super invalidit a) and a special assistance and attendance benefit
a di assistenza e accompagnamento). The concept and qualification of
(indennit
superinvalidity has been extended to civil and military State officials who have
suffered severe impairments during their service.92 The condition of such severe
impairments amounting to “superinvalidity” comprises 32 normative hypotheses as
defined in a table contained in the annex to Law No. 656/1986. Like victims of war,
service staff of the military or the police forces who suffered such highly
invalidating impairments are entitled to both types of benefits which vary according
to the severeness of the personal condition. Entitlement to these benefits has been
extended also to victims of terrorism and organized crime with a disability of at
least 80%.93
The benefits are granted to the disabled person but they may be used as an
economic support for third parties providing personal assistance. The monthly
benefit varies between a minimum of 158.24 € up to a maximum of 880.62 €
(2015). The impairments considered include total blindness, the loss of limbs or of
90
INAIL, decision of 10 April 2014.
91
Assegno mensile per l’assistenza personale e continuativa.
92
DPR 1092/1973; Law No. 9/1980.
93
On the development of the victim compensation systems cf. Hohnerlein (2011), pp. 57 ff.
252 E.M. Hohnerlein
their functions, and a significant change in mental abilities.94 An additional atten-

dance benefit (indennit a di accompagnamento aggiuntiva) is awarded to the dis-
abled victims affected by total blindness and who either lost both legs or both arms,
or all four extremities (both arms and both legs).95
Furthermore, certain categories among the most severely disabled war victims
and assimilated invalids were entitled to a military aide (now civil service aide)
when they were dependent on help from others for health reasons. Law
No. 288/200296 provides that if an aide is not available within 60 days the personal
attendance has to be replaced by a monetary benefit within the limits of available
resources. The maximum amount for this monthly benefit is 900 € (2015), in less
severe cases 450 €.97
2.4 Fiscal Benefits
Under income tax law, private expenses related to long-term care needs can be
deducted on different grounds. The resulting fiscal benefits are rather modest.
19% of the expenses incurred for personal care assistants can be deducted from
the income tax if a disabled person lacks self-sufficiency in accomplishing daily
living activities. The fiscal benefit applies only for tax-payers with an annual
income not exceeding 40,000 € and for expenses of up to 2100 € (corresponding
to a benefit of up to 399 €).98 The lack of self-sufficiency must be related to a
pathological condition and has to be proved by medical certification. The fiscal
benefit can be claimed either by the individual needing long-term care or by a
family member who sustains the costs.
In addition a fiscal benefit can be granted for mandatory social security contri-
butions paid for household help workers employed with a regular employment
contract. Employers may deduct their social security contributions for all kinds of
domestic helpers from the taxable income up to an amount of 1549 €. The exact
benefit depends on the income tax tariff applicable and thus can vary between a
minimum of 356 € (in case of the minimum tax tariff of 23%) and a maximum of
666 € (in case of the maximum tariff of 43%).
More consistent fiscal benefits are granted only for health-related expenses.
Medical expenses or expenses for “specific assistance” in cases of severe and
permanent disability or impairment, borne by persons assessed as disabled
94
Assegno di superinvalidit a pursuant to Presidential Decree (Decreto del Presidente della
Repubblica, DPR) No. 915/1978. The benefit replaces the formerly existing supplementary
benefits provided for care and attendance services to “major invalids.”
95
Art. 3 (2) of Law No 13/1987, Art. 8 of Law No. 656/1986.
96
As modified by Law No. 44/2006, and subsequent modifications.
97
Ministerial Decree (D.M.) of 14 September 2010 in connection with Law No. 44/2006.
98
Art. 15 (1) lett. i-septies of DPR 917/1986.
according to Law 104/1992 (Art. 3), may be deducted from the overall imposable
income.99 The deduction can be claimed by relatives that paid for the expenses.
This fiscal benefit can apply also for expenses of inmates living in residential
nursing homes (RSA). Some regions undertook steps to facilitate such deductions
for RSA fees.100
2.5 Monetary Benefits Under Regional Legislation

2.5.1 Entitlement Criteria and Benefit Amounts
One of the principal local social policy novelties during the period 2005–2012 was
the introduction of cash for care benefits by the regions and occasionally also by the
municipalities, which were mainly financed by resources from the National Depen-
dency Fund (FNA) introduced as of 2007. First regional care benefits for the support
of home care were introduced in Veneto in 1991 and in Emilia-Romagna in
1994.101 Cash benefits granted for informal home care not only aim at preventing
inpatient care, but simultaneously also reward the commitment of family caregivers
as a major element in the system of social services, to which the framework
legislation for an integrated system of social measures and services has also given
priority.102
As to the use and purpose of care benefits, two main categories have to be
distinguished: (1) cash benefits that can be freely used by the persons in need of care
(assegno di cura),103 originally primarily intended for family caregivers (spouses,
99
Art. 10 (1) lett. b) of DPR 917/1986.
100
The Regional Government of Lazio decided in 2016 that 50% of the RSA fees are linked to
specific health assistance and therefore susceptible of this fiscal benefit, thus following the
example given by Lombardy some years ago, cf. Decree of the Regional Government (Decreto
della Giunta Regionale, DGR) No. 3540 of 30 May 2012.
101
Lamura and Principi (2009), p. 75.
102
Art. 16 (3) lett. d) of Law No. 328/2000.
103
Cf. the regional care benefits in Veneto (impegnativa di cura domiciliare – ICD – since 2013,
replacing the former assegno di cura of 2007), Emilia-Romagna (assegno di cura anziani, 2006/
2007), Liguria (misura economica del Fondo regionale per la non autosufficienza, 2008), Friuli
(assegno per l’autonomia, but a 2015 reform introduced an obligation of accountability for 50% of
the benefit); Lombardy (buono sociale, 2008); Autonomous Province of Trento (sussidio per la
cura domiciliare di un anziano non autosufficiente, 2006; assegno di cura 2012); Umbria (assegno
di cura, 2005); Tuscany (ADI indiretta, 2006), Piedmont (Assegno di cura, 2006). Even southern
regions adopted this benefit: Sicily and Calabria in 2003, Abruzzo in 2006, Apulia in 2007, and
Sardinia in 2008. Coverage rates among the elderly vary widely (0.2% in Piedmont; 3–4% in the
Autonomous Province of Bolzano. Cf. Lamura and Principi (2009), p. 77, table 3.
254 E.M. Hohnerlein
daughters), and (2) care benefits awarded for the employment of care assistants or
family assistants (the so-called “assegno badante”).104
The second category in general requires the adoption of an individual care
programme (programma di assistenza individualizzato) defining the detailed rules
for the use of the benefits.105 Besides supporting the family, care benefits granted
for care assistants aim primarily at creating incentives to legalize the private care
market, and sometimes they also try to ensure minimum qualification requirements.
From an individual perspective, these cash benefits are meant to support the
autonomy of adult persons with disabilities (18–64 years of age).106 Whether the
relevant regional benefits represent a subjective right in terms of essential services
(livelli essenziali di assistenza sociale, LIVEAS) provided for under regional
legislation depends on the legal construction.107
The conditions regarding the use of these benefits differ from region to region. In
the Autonomous Province of Bolzano care benefits serve to finance long-term care
provided by family caregivers themselves and/or to pay for care services provided
by third parties. The approved use of benefits comprises payments for care and
support services, the coverage of the social security costs for family caregivers, the
implementation of measures directed towards an autonomous life, co-payments for
accredited in-home care services as well as stays in semi-inpatient and inpatient
long-term care and support facilities.108 Persons in need of care from the second
104
The Veneto region was one of the pioneers in introducing an allowance for family assistants
(asssegno badante) in 2002, DGR 4135/2006; DGRV 1338/2013 on the new cash benefit
“Impegnativa di cura domiciliare”, limited to cases with low care needs. See also Abruzzo, Decree
of the Regional Government (DGR) 121/2007; Emilia-Romagna, DGR 1206/2007; Aosta Valley,
DGR 690/2007; Friuli: “Contributo per l’aiuto familiare”, Presidential Decree of the Region (D.P.
Reg.) No. 7/2015, Art. 6; Sardinia: DGR 44/13 of 2007; Umbria: LR No. 28/2007; Lazio: DGR
890/2008; Autonomous Province of Trento, Legge Provinciale (LP) No. 15/2012. Lombardy
introduced a so-called “Buono badanti” (2006) and a new system of vouchers to support home
care on an experimental basis under the new “Family Fund” (DGR 116/2013; DGR 856/2013,
DGR 2942/2014) and adopted new legislation for various aspects of private care and family
assistants in LR No. 15 of 25 May 2015. For the typology of cash-for-care benefits cf. Pasquinelli
and Rusmini (2009), p. 84 ff.
105
Cf. for instance Autonomous Province of Trento, Art. 10 LP No. 15/2012 and Deliberazione of
the Giunta Provinciale (G.P.) No. 1233 of 14 June 2013.
106
Cf. in the Autonomous Region of Friuli the financial support for independent living, with a
yearly minimum of 5000 €, Legge Regionale (LR) of Friuli-Venezia Giulia, No. 6/2006 (Art. 41),
Regolamento 35/2007.
107
In the regions of Emilia-Romagna and Tuscany the benefits are granted as individual, subjective
legal rights, cf. Fargion (2012), p. 52. By contrast, the interventions financed from the care fund of
the Friuli region to support independent living of adult persons with severe disabilities (progetti di
vita indipendente) are limited by the resources assigned to the local social administration for that
purpose, a fact which goes against the concept of a subjective right to those benefits.
108
Cf. Autonomous Province of Bolzano, LP No. 9/2007; Resolution of the Provincial Govern-
ment No. 73 of 28 January 2014 on criteria regarding the acknowledgement of long-term care
dependency, the payment of care allowance and the administration of the long-term care fund. The
Autonomous Province of Trento extended the use of care benefits to paying professional,
accredited private care services and to contributing to co-payments to public long-term care
services (Art. 10 LP No. 15/2012, DGP No. 1233/2013).
care level onwards, who continue to live at home may be granted service vouchers
for in-home care hours.109 In addition, cash for care benefits will be paid in such
cases, however, only at the rate of level 1 care needs.
More and more often the care benefits provided for home help not only require a
regular employment contract with the care assistant but also the assistant needs to
be registered in an official list of accredited family assistants.110 In some cases, as in
the region of the Aosta Valley, an employment contract with relatives up to the
second degree is explicitly excluded from public support.111 In general, the
professionalisation of private family assistants through adequate qualification
programmes and the introduction of qualifying certificates has become an issue of
major concern also in those regions where the provision of care benefits is not
restricted to officially registered family assistants.112
In most cases, the payment of care benefits is linked to income limits regarding
the person in need of care or his/her supporting family unit. The care benefits
granted in the Autonomous Province of Bolzano113 and in Tuscany are not subject
to any income limits while in Lombardy it is within the discretion of the associated
municipalities to decide whether access to services is subject to income limits.114
The benefits may be set as a flat rate amount or may be defined according to the
severity of the case or the monthly or weekly need of support. Some regions offer
service vouchers for in-home care hours instead of monetary benefits.
Between 2005 and 2007, regional cash benefits that were not linked to the
employment of a care assistant varied between an average monthly amount of
200 € (Veneto) and 515 € (Autonomous Province of Bolzano).115 In some regions,
the maximum amount may reach 1000 € and more in cases of complex care needs.
In the Autonomous Province of Bolzano care benefits depend on the assessed care
level and amount to 1800 € per month for the highest level of care.116
109
These services generally involve co-payments.
110
Cf. Apulia, Autonomous Province of Trento, Aosta Valley as of 2014, Lombardy LR
No. 15/2015; see Rusmini (2013), pp. 156 ff. 159.
111
Art. 18 (2) lett. (a) LR No. 23 of 23 July 2010 (Aosta Valley) – T.U. in materia di interventi
economici di sostegno e promozione sociale.
112
For instance in Friuli, Basilicata, Lazio. In practice however, families prefer to rely more on
personal recommendation than on official registers, cf. Rusmini (2013), pp. 159f.
113
Provincial Law (LP) No. 9 of 12 October 2007; Resolution No. 73 of the Autonomous Province
of Bolzano of 28 January 2014 on criteria concerning the acknowledgement of long-term care
dependency, the payment of care allowance and the administration of the long-term care fund.
114
Rusmini (2013), pp. 155 ff., table 1, pp. 157–158. In the course of the financial crisis the income
criteria were tightened so that the number of beneficiaries decreased.
115
Lamura and Principi (2009), p. 77: Emilia-Romagna: 246 €; Liguria: 330 €; Friuli: 375 €;
Autonomous Province of Trento: 354 €; Umbria: 418 €.
116
The following benefits were granted in 2014: in care level 1 with a monthly need of support of
more that 60–120 h, the care benefit amounts to 547 €, in level 2 (more that 120–180 h of need of
support per month) it amounts to 900 €, in level 3 (more than 180–240 h of need of support per
month) to 1350 € and in level 4 (more than 240 h of need of support per month) to 1800 €. In the
region of Piedmont the monthly care benefit amounts up to a maximum of 1650 €, in the
Autonomous Province of Trento up to 1100 €, in Friuli up to 1092 €.
256 E.M. Hohnerlein
With regard to the care benefits awarded for family care assistants (assegno
badante) the amount is so small that it merely covers the costs of social security of
the employed caregiver (e.g. Apulia, Basilicata, Emilia-Romagna, Liguria, Marche,
Abruzzo, Lombardy) while it does not cover the employment costs as such.117 If a
family care assistant is accommodated in the household of the care-dependent
person, the monthly average costs for the regular employment of the former amount
to 1350 € (co-residence with 54 h a week), and to 850 € in case of 25 weekly hours.
If there is no regular employment contract, the amount decreases to an average of
850–1000 € per month in case of co-residence, and to 700 € per month in case of
25 weekly hours.118
2.5.2 Organization and Financing
Regional care benefits are granted by the municipalities or the local health units
(ASL).119 Most of the monetary benefits awarded to support informal long-term
care are not related to the formal system of home help services, or if so, only to a
limited extent. In some cases, the provision of benefits is part of an individual care
programme and is then subject to control by the municipal social service
(e.g. Friuli).
Between 2007 and 2009 the expansion of regional long-term care benefits was
mainly financed through the National Fund for Dependency (FNA). When the
refinancing of this fund was temporarily discontinued due to the economic crisis,
funding partly shifted to other social policy funds. In some regions monetary
benefits were even cancelled or reduced or tied to a more stringent means test so
that the number of beneficiaries decreased.120 Only very few regions have made an
117
Benefit amounts vary between 160 € (Emilia-Romagna) and up to 260 € (Veneto), depending on
the duration of long-term care. Cf. Pasquinelli and Rusmini (2009), p. 87. In the Autonomous
Region of Friuli the contribution to family assistance (contributo per l’aiuto familiare, CAF)
varies between an annual minimum of 3144 € and a maximum of 10,920 €. The financial support
assumes an employment contract for at least 20 h a week; several employment contracts can be
cumulated. If more than two family care assistants are employed and total working hours exceed
54 h a week, the care allowance is increased by 20%.
118
Pasquinelli and Rusmini (2009), p. 89. In the case of regular employment contracts, families
may deduct the social security contributions for care workers from their income tax to a limited
extent.
119
Grazioli (2012), p. 286.
120
In the Region of the Aosta Valley, for instance, the monthly care benefit for care assistants was
reduced by 250–300 € to an amount of 700–300 € while care benefits for family caregivers were
reduced to a monthly fixed amount of 300 €, cf. Legge Regionale (LR) No. 23/2010 (T.U. in
materia d’interventi economici di sostegno e promozione sociale) as amended by DGR No. 1553/
2011.
attempt to compensate for the withdrawal of state subsidies by financing their

regional care funds increasingly from their own resources.121
3 General Legal Framework of Long-Term Care

and Social Services
3.1 Legislative Powers of the State and the Regions
The protection of health falls within the so-called concurrent legislative powers of
the State and the Regions (Art. 117 (3) Constitution). This means that it is up to the
State to define the fundamental principles, while the region has the power to
regulate the details. Moreover, the State has been assigned the new normative
competence to define the so-called “essential levels” for the benefits concerning
social rights (Art. 117 (2) lett. m of the Constitution) which should guarantee the
principle of equality of citizens in the protection of their right to healthcare. As to
social services, legislative competence is attributed exclusively to the regions.
However, the State retains the power to define the “essential levels for the benefits
concerning social rights”, e.g. in case of disability, and with regard to children or
the elderly, or to other persons in vulnerable conditions. As to the organization of
social services, the State has no general normative competence. However, the State
has the power to determine the fundamental functions of the local entities and
municipalities (Art. 117 (2) lett. p of the Constitution). Accordingly, the State
established that fundamental functions of the municipalities encompass the “con-
ception and administration of the local system of social services and the granting of
the respective benefits to the citizens.”122
3.2 Definition of Core Levels of Benefits (livelli essenziali)
The “essential levels of benefits satisfying social rights” are a specific instrument to
remove severe territorial inequalities in the access to benefits deemed to be core
benefits for the protection of fundamental social rights. “Essential” does not refer to
a minimum benefit but is understood as the “essential content” of social rights
which the State undertakes to guarantee, and which could go as far as to the direct
121
Cf., for example, the Autonomous Province of Bolzano, Emilia-Romagna and the Region of
Veneto that tried to solve the problem by creating a uniform basket of benefits to promote in-home
care as of 2014, cf. on this Gori and Pelliccia (2013), p. 52, at fn 7.
122
Art. 19 (1) lett. g) of Decree Law (D.L.) No. 95/2012, converted into Law No. 135/2012. The
main sources used in the section on general aspects of the provision of long-term care services,
both healthcare and personal social services, are Pioggia (2014); Molaschi (2008); Morzenti
Pellegrini and Molaschi (2012).
258 E.M. Hohnerlein
provision of a given benefit if necessary.123 The regions may add further benefits to
those established as essential levels by the State.
3.2.1 Healthcare
In the case of healthcare benefits the idea of essential levels of benefits to be guaranteed
to all citizens has a long tradition dating back to Law No. 833/1978. Fundamental
reforms adopted in the early 1990s linked the definition of essential healthcare services
to the funding available and guaranteed by the National Health System (Servizio
Sanitario Nazionale, SSN). This crucial link between essential benefits and their
funding was reinforced by the 1999 healthcare reform. According to the initial concept,
the essential benefits should have been defined in the National Health Plan. However,
the first legally binding document defining essential levels of healthcare benefits was
adopted as a Decree of the President of the Council of Ministers on 29 November 2001.
In 2017, after 16 years, the essential levels of healthcare (LEA) were finally up-dated.124
Aspects of long-term care are contained in various parts of the 2017 D.P.C.M.,
yet the most topical one is chapter IV, devoted to activities and services that
concern the joint provision of healthcare and social services (assistenza socio-
sanitaria, Artt. 21–35).125 Services in the field of integrated healthcare are aimed
at satisfying individual healthcare needs that simultaneously require measures of
social protection to guarantee positive results in healthcare also in the long run.126
Long-term care issues are linked to the three macro areas of the healthcare system,
as defined by the 1992 healthcare reform. The first macro area on collective forms
of healthcare includes the topic of forensic medicine (medicina legale) which is
involved in the assessment of the national attendance allowance. The second macro
area relates to all kinds of community healthcare activities and services at the
district level as the organizational unit comprising home healthcare services and
community care services for the elderly, semi-residential facilities (day care cen-
tres) as well as residential care facilities for the elderly and disabled. The third
macro area refers to hospital healthcare, including facilities for rehabilitation and
for long-term hospital stays (lungodegenza).127
123
Corte cost. sent. No. 10/2010; see also sent. Nos. 282/2002, 248/2006, 387/2007 and 50/2008.
For details see Pioggia (2014), pp. 56 f.
124
The Decree (D.P.C.M.) of 12 January 2017, (Definizione e aggiornamento dei livelli essenziali
di assistenza, di cui all’articolo 1, comma 7, del decreto legislativo 30 dicembre 1992, n. 502), G.
U. (Official Journal) Serie Generale n.65 del 18-03-2017—Suppl. Ordinario n. 15 was based on an
agreement convened by the Conference of the State and the Regions. The novelties of 2017
comprise a more stringent integration of social services and healthcare services (Art. 21), and
home care services defined by 4 different degrees of support needs (Art. 22).
125
Chapter IV of the new Decree replaces annex 1, part C of the D.P.C.M. of 2001.
126
Cf. the definition contained in Art. 3-septies D.Lgs. No. 502/1992, introduced by D.Lgs.
No. 229/1999.
127
Art. 44 D.P.C.M of 12 January 2017. For details see Pioggia (2014), pp. 66 f.
As to long-term care, essential levels of care are defined mainly in the field of
integrated social healthcare (assistenza socio-sanitaria). A more precise determi-
nation of essential levels for benefits, in relation to the type of integration between
healthcare and social services, is contained in the Decree of the President of the
Council of Ministers of 14 February 2001, which provides for three categories of
“integrated” services with specific cost arrangements128: they range from total cost
coverage by the National Health Fund in case of benefits with a high level of
healthcare and social service integration that are characterized by a special rele-
vance of medical treatments and a high intensity of the healthcare component, to a
division of costs at a share of 50% each for healthcare and social services in the case
of healthcare benefits with a social component.129 Benefits defined as “social
services with a healthcare component” fall under the responsibility of the local
authorities, the latter of which have to cover the expenses according to regional
legislation.130
Although “essential levels of healthcare” (livelli essenziali di assistenza ¼ LEA)
are guaranteed as individual entitlements (including the issue of cost participation)
which can be judicially enforced, the guarantee of healthcare benefits in the area of
long-term care needs can be impaired in practice by waiting lists or by the
distribution of costs between healthcare and the social services. Both situations
have been brought before the courts and, in general, the courts (administrative as
well as ordinary jurisdiction courts) have confirmed the individual rights as defined
by the LEAs.131 In particular, the case law of administrative courts confirmed that
essential benefits to healthcare represent a subjective right of the beneficiaries that
cannot be subjected to rationing through the operation of waiting lists (established
to cope with budgetary constraints). The attempts of some regions to deviate from
128
“Atto di indirizzo e coordinamento in materia di prestazioni socio-sanitarie”. This decree
distinguishes between three levels for the combination of healthcare and social services: high
level of integration in which the healthcare aspect is predominant, health services with social
components, and social services with healthcare components.
129
According to Art. 3-septies (5) of D.Lgs. No. 502/1992, social healthcare benefits with a
predominant level of healthcare (prestazioni socio-sanitarie ad elevata integrazione sanitaria)
are guaranteed by the local health authorities (ASL) and are part of the essential levels of
healthcare. For the essential levels of benefits in the area of integrated social and healthcare see
Molaschi (2010), p. 479 ff.; Albanese (2012), pp. 129 ff.
130
Art. 3-septies (6) of D.Lgs. No. 502/1992. The 2017 D.P.C.M. defines the essential levels of
healthcare in case of long-term care needs according to intensity, complexity and duration of
healthcare interventions needed. Whether the implementation of the 2017 Decree will entail
changes in cost sharing arrangements is yet unclear.
131
Cf. Tribunale di Firenze, No. 1154; Regional Administrative Tribunal (Tribunale
Amministrativo Regionale ¼ TAR) of Piedmont, sent. No. 609/2012; No. 141/2013; TAR of
Lombardy, sent. No. 459/2012 and 461/2012.
260 E.M. Hohnerlein
the cost sharing established as part of the essential levels of healthcare benefits have
also been corrected by the courts.132
All essential levels of benefits in healthcare are bound to a number of principles,
such as human dignity, health needs, equitable access to benefits, quality, appro-
priateness of the treatment related to the specific needs, and economic efficiency.
A monitoring committee is in charge of assessing the regions’ compliance with
LEA standards.
3.2.2 Social Services
In the area of social services, the concept of essential levels of benefits (LIVEAS)
was introduced by Framework Law No. 328/2000 on the Integrated System of
Social Interventions and Services, a concept that slightly departed from the concept
developed in the healthcare sector (LEA). Since the constitutional reform of 2001
the State has not only been responsible for indicating general principles for such
essential levels but also has the duty to elaborate a precise definition of the services
that should be granted as subjective rights all over Italy. The definition of essential
levels of social service benefits has to be furnished simultaneously with the
necessary funding. According to Law No. 328/2000, subjective rights to receive
such services are to be created with priority for the vulnerable (soggetti fragili).
Two out of five types of services which have to be part of the local network of
services and of local planning are crucial for long-term care: home care services
(assistenza domiciliare) and care services in residential facilities. The framework
law moreover determines several macro levels for social interventions and services
highly relevant for long-term care: general interventions (cash benefits to promote
autonomous living, preferably at home) and specific interventions for the disabled
(interventions for the social integration of persons with disability), the provision of
centres for social rehabilitation, senior living communities (comunit a alloggio) for
the elderly and disabled (as a small-scale protected form of living), residential or
day care institutions.133 To implement these macro level interventions the regions
are bound to enact legislation for specific types of services dealing with long-term
care needs134:
– social secretariat for the information, orientation and counseling on the network
of services available
132
See TAR of Lombardy, sent. No. 1584/2010: services provided in residential care for an elderly
patient in a persistent vegetative state are to be qualified as social healthcare services with elevated
intensity of healthcare integration and are therefore entirely at the expense of the healthcare
system; Cassazione, sent. No. 4558/2012: health services in residential care provided to a patient
affected by Alzheimer’s disease is also to be borne exclusively by the healthcare system, as any
non-healthcare services involved are of a purely marginal character.
133
Art. 22 (2) Law No. 328/2000.
134
Art. 22 (4) Law No. 328/2000.
– professional social service

– home care services (assistenza domiciliare)
– emergency intervention service for personal and family situations which require
immediate action
– residential care homes and day care facilities (semi-residential facilities) for the
vulnerable
– other community-based centres.
Up to 2016, the essential levels of benefits in the sphere of long-term care social
services have not been defined comprehensively, but only for some specific aspects,
such as the definition of economic indicators for the access to subsidized social
services and for levels of cost participation. New rules on these specific “essential
levels” of benefits were introduced as part of the revised system of indicators
regarding the assessment of the economic situation of an individual claiming a
social service or benefit, the so-called ISEE system.135 The purpose of the ISEE is
to control access to various tax-financed social benefits and services and to mod-
ulate co-payments for users of specific services according to their financial capac-
ity. The revised ISEE system substantially changed the rules previously set forth,
e.g. the definition of the relevant income, the relevant household unit and the rules
for cost participation among relatives for specific long-term care services and
services for the severely disabled. The issue of cost participation had provoked
much judicial litigation, as numerous regions had adopted their own rules on cost
participation of relatives in case of residential care. Although the Constitutional
Court intervened in 2012136 and established that there was no national rule that
prevented regions from turning to relatives for cost participation, the inequalities
resulting from diverse regional legislation remained.137
The new ISEE rules of 2013 established a unified system for the assessment of
income capacity and for cost participation: the revision reduced public responsi-
bility and increased family responsibility, in particular the financial responsibility
of adult children for dependent parents in residential care.138 Some of the new rules
of the revised Decree No. 159/2013 affecting families with disabled members or
members in situation of long-term care dependency have been successfully
135
See Art. 2 (1) of Decree of the President of the Council of Ministers, D.P.C.M. No. 159 of
5 December 2013 (Regolamento concernente la revisione delle modalit a di determinazione e i
campi di applicazione dell’Indicatore della situazione economica equivalente).
136
Corte Costituzionale No. 296/2012, sentence of 11.12.2012 concerning the regional law of
Tuscany No. 66/2008.
137
Yet a minority of five regions claimed cost participation only from the beneficiary and limited
income testing to the beneficiary.
138
Cf. Giacobini (2015), p. 103 f. The new system became operative only as of January 2015,
according to the Decree of the Ministry of Labour and Social Affairs of 7 November 2014.
262 E.M. Hohnerlein
challenged before Administrative Courts139 and had to be corrected by subsequent

legislation.140
However, the State did not yet define the essential levels of social care services
in terms of quality and quantity. The extent to which the State will contribute to the
financing of the essential level of benefits has not been determined either, nor the
extent to which the regions and local authorities share financial responsibilities.
Law No. 328/2000, which preceded the constitutional reform of 2001, as well as
the National Plan for Social Interventions and Services adopted subsequently
(2001–2003) contain only very general principles for the future determination of
the essential levels of benefits, and instead of defining specific benefits as “essential
levels” rather deal with organizational issues regarding service provision, which
today fall within the exclusive legislative competence of the regions. The long-
lasting problems in defining the essential levels in social services are closely linked
to the provision of the necessary funds and the distribution of resources from the
National Fund for Social Policies and other funds, which have to respect the
financial conditions as defined by the Document for the Economic and Financial
Planning for the whole system of public finance. The lack of uniform essential
levels for social services defined at State level has been attributed to various
reasons, but the most important one is the problem of funding. This approach
towards social services as “conditional” benefits contradicts the recognition of
such services as social rights. Unlike essential healthcare services they cannot be
enforced judicially.
The absence of State action in indicating the essential levels of services has
induced some regions to define their own essential levels as quantitative and
qualitative standards in the context of regional planning.141
3.3 Administration of Healthcare and Social Services at

National, Regional and Local Level
Organization and management structures are split between healthcare authorities

and municipalities.
139
Cf. TAR of Lazio, Sect. I. sent. No. 2454/2015, No. 2458/2015 and 2459/2015 of 11 February,
2015. The sentences claimed that considering allowances granted to meet care-related needs as
“income” in the ambit of means-testing was unlawful as they were not aimed at providing income
support but at compensating for specific disabilities and care needs. By deliberation Nos. 838, 841
and 842 of 29 February 2016 the Highest Administrative Court (Consiglio di Stato) confirmed the
TAR decisions.
140
Cf. Art. 2-sexies of D.L. No. 42/2016, as modified by Law No. 89/2016, which exempted
disability-linked allowances from any ISEE calculation under D.P.C.M. No. 159/2013.
141
For example, Regional Law (LR) of Emilia-Romagna No. 3/2003; LR of Apulia No. 17/2003;
LR of Tuscany No. 41/2005, LR of Basilicata No. 4/2007.
3.3.1 Healthcare Services
At the central level the Ministry of Health is involved mainly in the protection of the
right to health and in the coordination of the public health system at its various
levels. A permanent committee for the evaluation of LEA standards has been
established at the Ministry.142
A special administrative organization for areas where both the State and the
regions have legislative powers is the National Agency for the Regional Health
Services (AGENAS), a public entity in charge of coordinating and supporting the
decision-making of all healthcare policies shared by the State and the regions in
view of developing and improving the National Health System. The activities of the
Agency—based on the guidelines of the Unified Conference of the State and the
Regions—deal with the assessment of the LEA, assessment and analysis of costs,
proposals for the organization of the healthcare services, analysis of innovation and
quality in healthcare, and monitoring of the waiting times.
The decentralization of the healthcare system in Italy has determined a shift of
powers and responsibilities towards the regions. While the granting of services falls
under the competence of the local healthcare entities transformed into healthcare
enterprises, the governance and administration of the regional healthcare system is
the responsibility of the regions, including regulation, orientation, planning, mon-
itoring, control, and assessment of the healthcare activities within the region. The
regional healthcare system is based on regional laws and other normative acts
dealing with the organization and administration of the healthcare services.
Regional legislation defines the geographical coverage and size of the territorial
healthcare institutions and hospitals organized as enterprises, but also the principles
for the organization of these entities and the administration of the production of
services. The region has to adopt the regional health plan. The Regional Govern-
ment is, in general, also responsible for adopting guidelines for the healthcare
authorities and distributes the funds designated for the healthcare system.
Administrative activities of the region include the authorization and accredita-
tion of services providers. In some regions the same general directorate is respon-
sible for healthcare services and for social services.143
Many regions have created entities for technical support, especially in terms of
normative regulation and guidelines for the regional organs that often also assist the
local healthcare institutions ASL and the hospitals (so-called agenzie regionali). In
Emilia-Romagna, this Agency has also taken up support functions for the social
services, in view of achieving integration of both healthcare and social services. In
some cases (like Liguria), the Regional Agency is also involved in the supply of
goods and services for the local health institutions.
142
So-called LEA Committee, established by agreement between the State and the Regions of
23 March 2005.
143
For details see Pioggia (2014), p. 99 f.
264 E.M. Hohnerlein
The local authorities participate in the permanent Conference for the planning of
healthcare and social healthcare issues, a consultative organ at the regional level for
the planning and assessment of the results achieved. New forms of cooperation
between the local and the regional level have emerged, in particular in view of
improving the integration of the healthcare system and the social services.144
3.3.2 Social Services
Governance of social services is split up between the different public levels of State,
regions, and municipalities. Essential features are subsidiarity and participation in
planning which extends to the third sector. At the State level the Ministry of Labour
and Social Affairs is responsible for the determination of the essential levels of
social service benefits (which have not been adopted yet), but also for defining the
minimum structural and organizational conditions for granting the authorization
and accreditation, and for the monitoring of services and facilities (premises). The
responsibility of the State also extends to defining professional profiles in the area
of social service professions, the access to and duration of professional education
and, in particular, to distributing and monitoring the resources of the National Fund
for Social Policies and the National Fund for Long-term Care.
The major part of governance and administration in the area of social services is
task of the regions. The region is responsible for planning, guidelines, regulation,
support, monitoring, control and assessment of social service activities. In partic-
ular, it is up to the region to decide on the modalities for the service provision,
e.g. by defining the territorial areas which the municipalities have to cover.
Regional competences include integration with neighbouring services in the field
of healthcare, relations with local authorities, definition of criteria for the authori-
zation of activities, for the accreditation and the monitoring of services and
facilities (premises), and of the criteria for the determination of tariffs the munic-
ipalities will pay to service providers bound by contractual arrangements. Last but
not least, the region also determines the cost participation of clients/users and
introduces instruments for monitoring the quality of service provision.145
As to the municipalities, their task is to construct a network of services including
the third sector, to provide the services (directly or indirectly), to manage the
authorization, accreditation and supervision of service providers, and to furnish a
definition of income-related criteria for access to subsidized services (accesso
agevolato ai servizi). As to the typologies of service provision, social services in
the field of long-term care can be provided directly by the municipality (in case of
smaller municipalities also by associated municipalities), by other public
144
E.g. the “Societa per la salute” (“societies for health”) created in Tuscany, cf. Fargion
(2012), p. 58.
145
For details see Pioggia (2014), pp. 162 ff.
institutions (by way of delegation, e.g. to the ASL), by private subjects after
accreditation, or by private subjects selected in other ways.
Besides the territorial public entities, some special public welfare institutions,
mainly supported by religious and other private associations, have been assigned a
special role in the network of social services in view of their long experience in this
field.146 Most of these institutions involved in the direct provision of services were
transformed into so-called public enterprises of personal services (Aziende
Pubbliche di Servizi alla Persona, ASP).147 Today, they are regional entities
participating in the integrated system of social interventions and services and in
planning at the local level.148
3.3.3 Integrated Social Healthcare Services
Long-term care services are among the most important features of integrated social
healthcare. Such services are divided into healthcare services with a social compo-
nent (prestazioni sanitarie a rilievo sociale) and social services with a healthcare
component (prestazioni sociali a rilievo sanitario), based on the “prevalence” of
needs.
The first type of services with a predominant healthcare component is assigned
to the local healthcare units ASL and is part of the essential care standards for
healthcare benefits (LEA).149 A specific form of the first type of social healthcare
services contains a very high level of healthcare elements (prestazioni
sociosanitarie ad elevata integrazione sanitaria). Due to the focus on medical
treatment these services are assigned exclusively to the healthcare sector. By
contrast, the second type of social healthcare services is assigned to the municipal-
ities, which have to provide for the financing of resources according to regional
legislation.
Integrated social healthcare should be implemented at the institutional, the
management, and the professional level. Moreover, it should be based on several
fundamental principles: the multidimensional assessment of needs, unity of inter-
ventions and of the course of their provision; the cooperation of professional staff of
the healthcare sector and the social services sector; definition of the course of
interventions based on the complexity of each individual case.
Despite this national legal framework, the role of the regions is decisive for the
implementation of integrated social and health services.150 While some regions
have adopted a single regional plan for the healthcare and the social services sector
146
The former “Istituzioni pubbliche di assistenza e beneficenza” (IPAB). For the regional
legislation of the ASP see e.g. LR of Emilia-Romagna No. 12/2013.
147
Art. 5 of D.Lgs. No. 207/2001.
148
Pioggia (2014), pp. 169 ff.
149
Art. 3-septies (4) and (5) of D.Lgs. No. 502/1992 as modified by D.Lgs. No. 229/1999.
150
On the different orientations of regional legislation cf. Albanese (2012), pp. 146 ff.
266 E.M. Hohnerlein
(Tuscany, Lombardy, Piedmont, Veneto, Emilia-Romagna), others continue to

adopt two separate planning instruments (Abruzzo, Molise, Marche, Campania).
While a majority of regions promote joint planning for both sectors, joint action in
terms of organization and cooperation in the individual cases (assessment of needs,
provision of services) is rather divergent, even at the intra-regional level (e.g. in
Piedmont).151
3.4 Planning of Long-Term Care Services at the National

and Regional Level
The planning of services to meet long-term care needs is partially split up between
the healthcare sector on the one hand, and the social services sector on the other,
although there are attempts for joint planning.
At national level, the general framework for the planning of long-term care-
related healthcare services is provided by the tri-annual national health plans which
contain a synthesis of macro guidelines and fundamental priorities convened by a
multilevel coordination. Other forms of planning by which different levels of
government coordinate their action are equally important, like the health pacts
(patti per la salute) consisting in tri-annual financial agreements between the State
and the Regions aimed at linking healthcare resources and planning, or the National
Plan for the reduction of waiting times. The regional health plans have two
functions: they pass on the macro objectives established by the National Health
Plan to the regional level, and they are the instrument to develop regional strategies
and policies in the field of healthcare. In addition, the regional health plans have the
special function of promoting the integration of healthcare and social services, and
of coordinating planning activities between healthcare, economy and environment.
Quite a few regions now adopt joint social and healthcare plans.152
In case of social services, Framework Law on the Integrated System of Social
Interventions and Services No. 328/2000 had originally conceived three levels of
planning: State level, regional level, and district level, the latter of which is related
to the activities of municipalities associated in a territorial unit as defined by the
region for the administration of the local system of social services (so-called zona).
After the constitutional reform of 2001 the planning function for the social services
at State level was passed on to the regional level. In general, institutional partici-
pation of local authorities and social participation of the third sector in regional
planning are regulated in regional legislation.
151
Cf. the examples presented by Fargion (2012), pp. 37 ff., 57 ff. (Lombardy, Tuscany, Emilia-
Romagna, Piedmont, Apulia).
152
Like Piedmont, Lombardy, Veneto, Friuli-Venezia Giulia, Liguria, Emilia-Romagna, Marche,
Basilicata, Sardinia, Aosta Valley, Tuscany. Cf. Pioggia (2014), p. 137.
3.5 Participation of Private Subjects in the Provision

of Healthcare Services
The participation of private subjects as service providers is based on a system of

accreditation introduced and developed as a method to assess, periodically and
systematically, the quality of healthcare.
The role assigned to private providers and the relations between public and
private providers have changed over time due to fundamental reforms introduced
since the 1990s.153 The relationship between the public and private sectors is
basically regulated by accreditation of facilities (and private practitioners) who,
once accredited, are entitled to provide services on behalf of the National Health
Service (SSN) with fees fixed by the regions within the maximum amounts
established at the national level. The number of accredited providers is not unlim-
ited, but linked to the performance requirements that every region determines for its
own territory, which also include services offered by public facilities. Providers are
required to sign annual contracts which establish the volume of activities and
expenditure ceilings for facilities, and providers are subject to regression tariff
mechanisms, which attempt to control the overall level of expenditure.154
According to the current model all public and private service providers are
submitted to the requirement of accreditation based on the same criteria of organi-
zation and functional quality standards, and financially compensated according to a
system based on tariffs or for single benefits. The idea to activate competition
between providers was supported by the principle of free choice of the beneficiary
as regards the service provider and the place of service provision, in conformity
with the prescription issued by the general practitioner (medico di base).
The admission of private providers is strongly conditional upon the regional
planning which is based on the expected demand of services. The planning allows
not only governance of the services offered, but also the utilization of public
services in place.
The admission of private service providers requires the stipulation of special
contracts which regulate the services and the quantity of services that may be
provided at the expenses of the regional health service. The principle of free choice
for the beneficiary is also determined by these conditions, namely accreditation and
contractual relations established between the service provider and regional health
service.
The current model is based on a series of public acts aimed at assessment, control
and planning, and consists of four steps: authorization to establish the facilities of
service provision; authorization to perform the healthcare activities; institutional
accreditation, and finally, the stipulation of agreements. Only those public and
153
D.Lgs. No. 502/1992, as amended by D.Lgs. No. 299/1999.
154
Ministry of Health (2011), p. 246.
268 E.M. Hohnerlein
private subjects that successfully pass all these steps can provide health services on
account of and at the expenses of the regional health service.
A different form of participation of private providers is based on new adminis-
trative modalities of joint (public and private) service provision.155
3.5.1 Authorization
There are two types of authorization. The first type is required for the establishment
of new residential or semi-residential facilities (or for the modification of an
existing one). It is granted by the municipalities after agreement with the regional
health planning unit.156
The second authorization refers to the exercise of healthcare activities by public or
private service providers and is granted—in conformity with regional legislation—
either by the municipality (e.g. Autonomous Province of Trento, Campania, Emilia-
Romagna, Marche, Veneto) or by the region (e.g. Lazio, Molise, Umbria, Sardinia) if
minimum technical, structural and organizational requirements are met in order to
guarantee a secure and qualified service provision. The necessary minimum require-
ments are defined at national level by decree, based on principles like the guarantee
of essential services, the coherence with objectives of the National Health Plan,
conformity with national and European Union law, etc. The regions may add further
requirements.157
3.5.2 Accreditation
Authorized private providers of health services can freely offer their services on the
market. However, if they want to take part in the network of services operating on
behalf of and at the expenses of the regional health service, they have to pass the
two subsequent steps (accreditation and contractual agreement) which are strongly
interrelated. The purpose of the accreditation is to guarantee additional quality
requirements in the provision of services.158
The accreditation procedure is mandatory for both public and private providers
and is closely linked to the regional planning of health services. It requires regular
assessment of the quality of the organizational, managerial and technological
infrastructure of healthcare providers and of the skills and practices of health
155
This particular model of participation and cooperation has been introduced on an experimental
basis at the national level, but as its implementation concerns the organization of services, current
regulation falls completely under the legislative powers of the Regions. See Pioggia (2014),
pp. 129 ff.
156
Art. 8-ter D.Lgs. No. 502/1992.
157
Pioggia (2014), p. 126.
158
For accreditation in the field of integrated social healthcare as compared to the field of social
services cf. Bellentani (2010).
professionals. In addition, accreditation requires the evaluation of the value added

by each newly accredited provider, taking into account existing regional health
services. If the accreditation requirements are met by a public provider, the region is
bound to grant the accreditation, whereas private providers must not only meet the
objective requirements but their services have to be coherent with regional plan-
ning. In general, the accreditation is issued directly by the regional department of
health, except for Lombardy where the local health units ASL are in charge of the
accreditation.159
3.5.3 Contractual Agreements
The last phase consists in the stipulation of contracts (agreements) with public and
private providers.160 The purpose of these instruments is to indicate the volume of
service activities that each provider assumes to provide on behalf of the regional
health service and the corresponding remuneration. The contractual instruments
allow the regions to regulate the amount of services offered in a way that is
completely coherent with their planning. In the absence of a contractual agreement,
the institutional accreditation is suspended.161
3.6 Participation of Private Subjects in the Provision

of Social Services
According to the framework legislation on social services all types of social care
facilities for residential care and semi-residential care managed by the public
sector, by not-for-profit organizations or by other private providers, are subject to
a system of authorization and accreditation. It is similar to the one in force for the
healthcare sector, but not identical, as it presents some peculiarities, e.g. in view of
the different relation between public and private providers.162
Municipalities, regions and the State should promote a pluralistic supply of
services so as to guarantee the right to choose among those services.163 The
guarantee of private interventions can be derived from the Constitution (Art. 38).
Still, private providers of social services are subject to public regulation. Common
prerequisites for all providers should guarantee equal protection of the rights
159
Lombardy: Art. 9 LR No. 33/2009; for details see Pioggia (2014), p. 126.
160
Cf. Art. 8-quinquies of D.Lgs. No. 502/1992 and subsequent modifications and regional
legislation. The contractual arrangements are called “accordi” in case of public providers, and
“contratti” in case of private providers.
161
Art. 8-quinquies (2) of D.Lgs. No. 502/1992, as amended by Law No. 133/2008.
162
Bellentani (2010).
163
Art. 3 (4) of Law No. 328/2000.
270 E.M. Hohnerlein
involved. Public authorities regulate authorizations (which are required for the
establishment of new facilities, and for the supply of services as such), accredita-
tion, different types of contractual arrangements (convenzionamento), as well as
control and supervision of private service providers.
There are various private subjects that may provide social services, including
professional service providers as well as the family and private individuals. Frame-
work Law No. 328/2000 promotes the role of the non-profit sector which, by its
very characteristics of not seeking financial profit and the solidarity objectives
pursued, has a long tradition in the social service sector. The privileged partnership
between the public sector and the non-profit sector is explicitly recognized in terms
of planning, organization and administration of the integrated system of social
services, including organizations of public utility, of cooperatives, associations
and other entities of “social promotion”, of foundations and the patronati,164 of
organizations of volunteers, etc.165 In addition to the non-profit sector private
commercial providers may offer their services.166
3.6.1 Authorization and Accreditation
According to Law No. 328/2000 and to regional legislation all social care facilities
offering residential and semi-residential services, whether managed by public,
non-profit or commercial organizations, are subject to licensing (preventive autho-
rization) and accreditation.
Authorization essentially seeks to guarantee that the rights of the beneficiaries
are not violated or put at risk, and that the services meet minimum standards in
terms of quality and organization. The authorization is issued by the municipal
administration in conformity with regional legislation and with local necessities,
while minimum structural and organizational requirements are defined at the
national level.167 The municipalities are also in charge of controlling the quality
of the services and their supervision as to their compliance with defined standards.
164
Patronati are institutions established by trade unions, offering assistance and protection to
members of the labour force, pensioners and residents in general, and are funded by social security
contributions.
165
Art. 1 (4) of Law No. 328/2000. Cf. also D.P.C.M. No. 31/2001; Law No. 266/1992 (on the
institutions for volunteers), Law No. 383/2000, Art. 2 (1) (on associations of social utility); Law
No. 381/1991 (on social cooperatives).
166
Art. 1 (5) of Law No. 328/2000. For-profit providers are not involved in the planning and
organization of the service system. See Pioggia (2014), p. 174.
167
The national definition is contained in Decree of the Ministry for Social Solidarity No. 308 of
21 May 2001. The standards for facilities deal with easy public accessibility, spaces dedicated to
collective activities, qualified professional staff and a responsible coordinator for the services, and
the planning of services according to an individual care programme. Regional legislation may add
further standards.
The second step to become part of the integrated system of social services is
accreditation which is also granted by the municipality168 if additional require-
ments/standards as determined by the regional legislation are fulfilled. Some
regions have set the same procedures for the accreditation of health and social
care, while others have introduced separate systems for both areas. Accreditation
qualifies public and private services providers as “appropriate” for the integrated
system of social interventions and services. A relevant condition for obtaining
accreditation is, e.g. the adoption of the so-called Service Charter (carta dei servizi)
which is an important instrument for regulating the relationship with the beneficia-
ries, as it must indicate in a general way the quality of the services and their
characteristics, the modalities of providing the services, the standards of the
benefits, and a guarantee that the right to social care services is part of the common
essential levels.
Although accreditation is linked to the planning of social services provision, in
general there is no restriction as to the number of providers and as to the volume of
social services (caps). This characteristic—which is different from the healthcare
services—is due to historical and structural reasons. Traditionally, public provision
of social services always has been insufficient, so there is no risk of underutilization
of public services as in the case of healthcare. In the area of social services there is
no real market, partly because private providers rarely act for economic objectives
only, partly because the beneficiaries often are in difficult economic conditions. A
third reason refers to the access modalities for such services. In fact, access is in
general highly centralized and controlled by the public entity which has to pay, the
municipality, by means of the so-called social secretariat which serves as the
entrance gate to the service system.
3.6.2 Contractual Arrangements for the Purchasing of Social Services
In general, service provision at the expenses of the municipality presupposes the

stipulation of some kind of agreement or contract (convenzione) by which the
services offered are made coherent with regional and local planning. As to the
selection process of private service providers by public authorities different types of
purchasing can be distinguished.
The first type consists in the stipulation of a contractual agreement between local
authorities and service providers following their accreditation, as in the field of
healthcare facilities. Such agreements are contracted with several accredited sub-
jects, taking into account the needs of the population and the caps for expenditure
determined by the regions. This type of contractual arrangement is different from
public tenders leading to an exclusive contract with one single provider for a certain
period of time. At the expiration of this date, a new tender has to be organized,
instead of continuing the existing contract for service provision.
168
Except for the Autonomous Province of Bolzano and the Region of Aosta Valley.
272 E.M. Hohnerlein
The second type consists in commissioning the service provision to the private
providers while the services remain under public responsibility (so-called
affidamento dei servizi ai privati). In this case, there is close public-private part-
nership in the supply of the same service as the private provider is asked to run the
service on behalf of the public authority.
The commissioning of social services can involve private for-profit providers as
well as private providers of the non-profit sector. In case of for-profit providers, the
Code on Public Contracts applies.169 Social services are subject to some limitations,
but the general principles (e.g. equal treatment, transparency, proportionality,
efficacy, impartiality, cost effectiveness) have to be respected. In case of private
providers of the non-profit sector, the commissioning of services is regulated by
Law No. 328/2000. Accordingly, local authorities must promote measures to
enhance transparency and administrative simplification. The regions have to
adopt specific guidelines to regulate the relations of commissioning between
municipalities and the third sector in conformity with the national level.
Several regions have adopted legislation for such commissioning, which some-
times even allows to prioritize the commissioning of associations of volunteers,
without using any public procurement procedure.170 The general rules for commis-
sioning social services have been defined by State Decree D.P.C.M. No. 31/2001. It
recognized the need for selection procedures, yet specified criteria for the selection
that are different from those normally used in public tenders. Moreover, it allows
for restricted selection procedures whereby the administration elects one or several
providers with whom the conditions of the contract are to be negotiated. Although
the State Decree is not binding for the regions any longer due to the constitutional
reform of 2001, it is still being used as major point of reference by subsequent
regional legislation.
3.7 Financing of Long-Term Healthcare and Social Services
The overall funding dedicated to long-term care needs is deemed to be largely

insufficient.171
The financing mechanisms of healthcare services and of social services for
persons with long-term care needs follow different patterns and rules. In the area
of healthcare, the local health authorities ASL fund healthcare services supplied by
public providers or by private accredited providers. The financing of healthcare
169
D.Lgs. No. 163/2006.
170
See Liguria, LR No. 57/2009, cited by Pioggia (2014), p. 181.
171
The expenditure for invalids and persons needing long-term care amounted to 26 billion € in
2011, which was 7.5 billion € below the average expenditure in Europe taking into account the
population, cf. Baldini (2014). Expenditure was reduced during the the economic and financial
crisis in Italy.
services in Italy is based essentially on taxes from the general revenue, on the
regional tax on productive activities (IRAP, introduced in 1997), regional additions
to the income taxes, and co-payments (so-called “tickets”) of healthcare recipients.
The global legal framework for the transfer of financial resources between the State
and regions and between the regions and the local authorities has been subject to
fundamental changes following the process of fiscal federalism. The direct transfer
of financial resources from the State to the regions was to be abolished, and regional
expenses for the essential levels determined by the State should be funded through
shares in various national taxes, the regional tax IRAP, and the share in the
compensation fund ( fondo perequativo); likewise, local authorities should fund
the planning and management of their local system of social services and benefits
through local taxes and participation in national and regional taxes.172
The healthcare quota in the field of integrated social healthcare services
(as defined in D.P.C.M. of 14 February 2001) is not subject to any co-payment by
users but entirely at the expenses of the healthcare fund, while the “social quota” of
such services is subject to co-payments. However, in case of poverty or insufficient
means of the beneficiary, the municipality of residence has to cover the expenses.
Social services are financed by national and regional taxes and by contributions
(co-payments) from users dependent on their income. The most prominent funding
instrument in this field is the National Dependency Fund (FNA) which serves
mainly to distribute annual national resources to the regions, according to certain
socio-economic indicators, in particular the characteristics of the regional popula-
tion with long-term care needs. The FNA was established with the purpose of
equally guaranteeing essential levels of long-term care benefits in all parts of Italy,
but until 2016 those essential levels have not been defined.
In the absence of objective criteria the Government used to decide in the annual
budget law (now stability law) on a completely discretional basis the amount to be
allocated to the FNA. The annual funds available for long-term care thus varied
greatly.173
Besides, the funding of social services is also based on private co-payments
which are determined according to the system of economic indicators called ISEE
currently regulated by D.P.C.M. No. 159/2013.174 This decree partially reversed the
criteria of cost participation adopted in 1998, in particular in terms of the so-called
“social quota” of residential care for the elderly with long-term care needs. Under
the new national ISEE rules of Decree No. 159/2013, the income assessment is
extended to various family members and relatives, even to adult children not living
in the same household.
172
Cf. Law No. 42/2009, D.Lgs. No. 68/2011 and D.Lgs. No. 23/2011.
173
Starting with 100 million € in 2007, later oscillating between 400 million € in 2009/ 2010 and
zero in 2012. For 2015 see the Stability Law (legge di stabilit
a), Law No. 190/2014, Art. 1 (159). A
second national fund providing financial resources for long-term care services at regional level is
the general social policy fund.
174
The Decree of the President of the Council of Ministers (D.P.C.M.) No. 159 of 5 December
2013, replaced the previous ISEE system established by D.Lgs. No. 109/1998.
274 E.M. Hohnerlein
4 Formal Home Care Services
4.1 Typology of Services
Home care services can be part of the healthcare assistance at home (home nursing
services) or of social services (home help and personal care),175 often
complemented by other support services (meals service, counselling, etc.) for
frail elderly or invalid persons. Up to now there is no national law defining and
regulating formal home care service in a comprehensive way but rather a variety of
regional rules. Home nursing services may be complemented by technical aids176
funded by the healthcare system. Some types of care services like respite care can
be organized by the healthcare unit or by the municipality.177
The principal legal documents concerning home care benefits and services at the
national level consist in planning and financing instruments like the tri-annual
Health Plans and the tri-annual Agreement for Health (Patto per la Salute) and in
the Presidential Decree D.P.C.M. of 12 January 2017 on the definition and revision
of the essential levels of healthcare benefits. The regulation of such care services is
governed by regional legislation. The national framework law on the integrated
system of social interventions and services refers to home care services (assistenza
domiciliare) as benefits that have to be provided for under regional legislation, yet
without defining their core contents.178
Integrated healthcare services (assistenza domiciliare integrata, ADI) and per-
sonal social care services (servizi di assistenza domiciliare, SAD) provided at home
are aimed at helping the patient/client to cope with health problems, combatting
functional decline and improving the individual life quality and thereby avoiding
deferral to institutional or residential care. SAD services are the main intervention
to assist the elderly with difficulties in coping with instrumental activities of daily
living (IADL). By contrast, healthcare services provided in the home should help to
avoid inappropriate hospital care, and reduce the duration of hospital care as much
as possible. In view of this objective, home care services are aimed at supporting the
fragile elderly so that they can continue to live at home, at supporting the family,
offering alternative solutions if family support is not available, and at providing
continuity of healthcare through programmed dismissal from acute hospital ser-
vices, from rehabilitation facilities or from residential care services (RSA).179 In
addition to the more traditional types of home care services new types of interven-
tions are emerging. They refer either to more specified care services in view of
175
Home-help: household activities, shopping; personal care: assistance with washing, dressing,
eating, going to the bathroom, etc.
176
Stair lifts, wheelchair ramps, rollators, personal alarm or telephone alert, etc.
177
For the characteristics of home care in Italy, cf. Melchiorre et al. (2013), p. 153.
178
Art. 22 (4) Law No. 328/2000.
179
Ministry of Health (2010), QMS, pp. 97 f.
special needs like in case of beneficiaries with dementia, or to the provision of

specific support for family caregivers with regard to their care burden.180
Integrated home healthcare services are focused in particular on patients after
dismissal from hospital, on chronically ill patients in need of highly integrated
forms of healthcare from a multidisciplinary team (medical doctor, nurse, social
assistant), and on terminally ill patients. Most frequently, the group of patients
includes elderly persons in a condition of multimorbidity, elderly persons suffering
from dementia, the consequences of fractures and/or brain damage; adults with
severe diseases (like ALS),181 rare diseases; minors with severe clinical conditions.
ADI services are most commonly part of the primary healthcare services to be
treated within “community social healthcare” (Distretto Sanitario or
Sociosanitario). The term “integrated” may refer as well to the involvement of a
multi-professional medical or paramedical staff as to the combined involvement of
medical staff and the social professions. In 2007, a genuinely integrated action of
both professional disciplines in home care services was effected in only 41.3% of
Italian municipalities. And in still one third of the regions less than 25% of
municipalities are providing this kind of services.
The SAD services, organized under the auspices of the municipalities, provide
domestic help and personal care. They include housework, shopping, the purchas-
ing of medicine, help with transport, laundry services, personal care and hygiene
(help with getting up and going to bed, with getting dressed, eating, taking a bath,
etc.). The majority of social home care services are provided in the home of the
beneficiary. But services provided in day care centres can also be part of home care
services.182 Like the ADI services of the local healthcare units they are also aimed
at avoiding residential care of the frail elderly who cannot remain in their homes
without the personal help from another person.183 Among the home care services
there are also services for meals to be delivered to the home of the beneficiary,
intended mainly for persons older than 65 living alone and who are partially or
totally non-self-sufficient, or for disabled and invalid persons.
The National Framework Law on Integrated Social Services (Law
No. 328/2000) expressly provides that a portion of the National Fund for Social
Policies should be dedicated to the services for persons needing long-term care, in
view of supporting their autonomy and sustaining the family in their home care
180
Del Favero (2011), p. 30. According to recent reforms in the region of Lombardy special
support services for family members assisting senior patients with dementia or other psycho-
geriatric disorders are to be supplied by providers of residential care, as a form of “open”
residential care.
181
Amyotrophic lateral sclerosis (ALS), a severe neuromuscular degenerative disease.
182
As in the Autonomous Province of Bolzano, which offers services for personal hygiene
(assisted bathing, showering, hair washing), laundry services, pedicure.
183
Besides the elderly needing long-term care services, social care services can be activated in
favour of other beneficiaries, like persons with disabilities, families with children or adults in
specific conditions.
276 E.M. Hohnerlein
activities.184 In the absence of any further national legislation and specific defini-
tions governing SAD services, the social care services at home are regulated at the
regional level, but as the services are provided at the municipal level, there is a great
variety of organizational models. In general, the specific social care services are to
be determined by the regions, whereas the provision of these services is an
obligation of the municipalities which cooperate with specific professionals or
commission the service to providers of the third sector.185
4.2 Access to Home Care Services
Access to ADI and SAD home care services follows different criteria. Since the
economic crisis of 2008/2009, some regions tend to concentrate ADI services on
specific groups of beneficiaries, like on people affected by a particular disease (like
ALS) or by extremely severe health conditions, or on terminally ill patients. Some
regions still have organized separate “access points” for home nursing services and
for home help services, but the regions are increasingly trying to establish a single
access point for both types of services.
4.2.1 Integrated Home Healthcare Services (ADI)
Access to integrated home healthcare services is granted according to the attested

care needs. Availability of informal caregivers is taken into account. According to
the essential levels of healthcare as defined by D.P.C.M. of 12 January 2017,
integrated forms of healthcare and social care should be provided by joint activities
and benefits of the healthcare and the social service sectors. The National Health
Service has to guarantee uniform access to such health and social services; it is also
responsible to take into charge the persons that need such services, and provide for
the multidimensional assessment of the care needs involved, including clinical,
functional and social aspects. The corresponding activities are to organized by the
regions and the autonomous provinces.186
ADI services are free for certain categories of patients, in particular for beneficia-
ries over 65 and with a minimum income, but also for people with recognized chronic
disabling diseases, for terminal cancer patients and during an intensive post-acute
phase (protected discharge from hospital). In other cases, a co-payment is requested.
Access to services requires a complex procedure of notification (sometimes
supported by a distinct application for intervention) and a multidimensional eval-
uation of long-term care needs. The different regions vary greatly as regards the
184
Art. 15 of Law No. 328/2000.
185
Grazioli (2012), p. 270.
186
Art. 21 of D.P.C.M 12 January 2017.
procedures of access as well as the definition of the benefits as such. Most

commonly, regional legislation deals with the access procedure, the participation
of a multi-professional assessment unit and the establishment of an individual care
plan. The different benefits available within the ADI services, however, may vary
from one region to another, and so are the classifications according to different
long-term care needs. About half of the regions have arranged for two or three
levels of benefits according to the different level and intensity of care needs. Most
commonly, the regions choose a classification of three levels, corresponding to a
low, medium and high level of home healthcare services.187
4.2.1.1 Request of Intervention
The notification of a potential need for home care services can be made by various
subjects, including medical doctors (general practitioners, freely elected pediatri-
cians, hospital doctors, at the moment of the patient’s discharge from hospital,
family members, municipal social services, etc.). In about half of the regions this
notification already serves as a proposal or suggestion to intervene (Abruzzo,
Basilicata, Emilia-Romagna, Apulia, Sicily, Veneto). Other regions require, in
addition, that the notification is formally backed by a general practitioner in order
for it to be considered as a formal request to intervene.
All notifications and requests have to be collected and formally accepted in order
for the procedure of providing home care services to be activated. In half of the
regions, Single Access Points as points of contact (punto unico di accesso, PUA)
have been established for the collection of notifications and requests, whereas in
some regions requests are accepted in units dedicated to home care services. In
Lazio and Umbria the requests have to be collected by the general practitioner who
has to activate the formal procedure after a preliminary evaluation of the cases.
There is a tendency to concentrate the collection of all pertinent requests of
social services at the local level (healthcare and social care) at multifunctional help
desks. The alternative model is to use the general practitioner as the professional in
charge of collecting the requests for home care and to provide a first evaluation.
Where single access points have been put in place, they are, in most cases, also
expected to accelerate the further process of identifying the specific needs and the
appropriate answers to those needs.188
187
Gori and Casanova (2009), p. 41. The inspiration comes from the three levels of long-term care
needs presented in the document on standards for home care health services, proposed by the
Commission for the revision of the essential levels of healthcare benefits in 2006, cf. table 1 in
Gori and Casanova (2009), p. 43. Cf. also the three levels of integrated ADI services defined as
essential levels of healthcare in Art. 22 (3b–3d) of D.P.C.M. 12 January 2017. On the persisting
regional disparities cf. Vetrano and Vaccaro (2017).
188
For details see Pesaresi (2010), pp. 151 ff.
278 E.M. Hohnerlein
4.2.1.2 Assessment of Care Needs
The request for home care services has to be assessed by a multidimensional

evaluation unit (unit a valutativa multidimensionale, UVM) in order to determine
the healthcare and social care needs based on validated evaluation systems which
allow for summarization of the clinical, functional and social conditions of the
patient. The evaluation can be made either through a home visit, or through a
hospital visit. The process of evaluation is closed by admitting or denying the
respective home care services. The evaluation unit is also in charge of defining the
objectives of the home care services and of providing the individualized assistance
plan (“Progetto di assistenza individuale”, PAI, formerly). This procedure had been
adopted by all the regions except Lombardia, where admission of the patient to
home care services used to be by the general practitioner of the patient (medico di
medicina generale, MMG), without recourse to formal instruments of
multidimensional evaluation.189
Some regions (like Emilia-Romagna, Veneto) require a multidimensional
assessment as a condition for access to home care services only in very complex
cases. In other situations a simplified procedure applies that involves only one
single professional.
The composition and functioning of the assessment units is seen as a decisive
element for the proper functioning of the (healthcare and social care) ADI services.
It is the task of this unit to determine the healthcare services and the social care
services to be provided, so that the therapeutical and care indications contained in
the personal care programme can be implemented effectively. In order to achieve
this objective, one member of the assessment unit is to represent the municipality or
the social environment (usually a social assistant worker), and should be able to
make available a package of resources on behalf of the municipality he or she is
representing. As to the first element, a majority of regions now provide for a social
assistant as a permanent member of the assessment unit.190 The second element,
related to the financial responsibility of the member representing the municipality
or any other territorial entity, is not yet implemented on a larger scale: For example,
the regions Veneto and Toscana have so far provided for the stipulation of an
agreement (protocol of understanding) between the Local Health Unit ASL and the
municipalities to confer to their representatives within the assessment units oper-
ative powers, technical-professional as well as financial resources in order to allow
them to approve the individual care programme.191
189
Pesaresi (2010), p. 154.
190
Pesaresi (2010), p. 155, expressly referring to Campania, Marche, Umbria; Friuli, Piedmont,
Apulia, Sardinia, Autonomous Province of Trento, Veneto, etc.
191
What is essential is the power to engage the municipalities in financial obligations (potere di
spesa). The Region of Marche has not delegated this power to the representative of the munici-
pality within the assessment unit, cf. Pesaresi (2010), p. 155, table 7.
4.2.1.3 Definition of an Individual Medical and Social Care Plan
All the regions have adopted provisions according to which the multidimensional
assessment unit (UVM) has to elaborate an individual care plan after the assessment
of every complex case. The individual care plan (“Progetto di assistenza
individuale”, PAI, formerly piano assistenziale individualizzato) determines the
healthcare and social care services (home help services, etc.) to be granted, the
results to be expected, the controls to be effected, the presumed duration of the
intervention, and the types of professionals who are to take care of the patient.
In many regions, the UVMs are also in charge of evaluating the implementation
and the efficacy of the individual care plan. When results prove to diverge from the
anticipated results, assessment units are required to adjust the individual care plan.
The individual care plan is determined according to different procedures which
vary not only from one region to another, but also between the different local
healthcare units (ASL) within the same region. Regional time limits allowed for the
submission of the individual care plan may constitute a problem with a view to the
effective provision of services, as waiting times may turn out to be too long. On
average, ADI services are granted for less than 90 days (e.g. Abruzzo, Lombardy,
Veneto). An exception is the Emilia-Romagna region with healthcare services by
nurses provided for 159 days on average.192
4.2.2 Domestic Aid and Personal Care Services (SAD)
Home help services can be activated by the client, the family or social services.
Access to domestic aid and personal care services is granted, in general, through the
municipal authorities after a home visit by a social assistant/social worker
according to the personal care needs. Regional legislation defines the access criteria
and procedure. Access may be granted also to persons temporarily unable to live
independently.193 For the assessment of care needs the condition of the beneficiary,
the family context and the economic condition are taken into account. Eligibility for
SAD services is means-tested, based on the personal and/or the family income. The
assessment of the economic condition is based on the so-called ISEE (indicatore
della situazione economica equivalente).194 In addition to the means testing for the
access to services, means tests are also used to determine co-payments.
192
Pesaresi (2010), p. 161.
193
E.g. home care services in the Autonomous Province of Bolzano.
194
For ISEE, see supra fn. 135.
280 E.M. Hohnerlein
4.3 Availability and Intensity of Home Care Services
Although the average coverage rate of ADI services for the elderly increased from
2.9% to 4.3% of the population 65+ in the period 2005–2012, coverage declined in
4 regions.195
The average intensity of ADI home care services based on the number of hours
provided per year and beneficiary aged 65+ slightly increased from 20 to 21 h in
2010–2012. Service intensity ranged from only 6 h in Friuli to 37 h in Aosta Valley
in northern regions, and was surprisingly high in most of the southern regions, in
particular in Molise (81 h), Basilicata (43 h), Apulia (37 h) and Sardinia (36 h).196
Extension of ADI services is guided rather towards reaching a greater number of the
target population than towards more intensive interventions as to the hours
granted.197
Coverage rates in municipal social care services for the elderly (SAD) declined
in almost all Italian regions, on average from 1.6% to 1.3% between 2008 and 2012,
whereas the average expenditure per single beneficiary increased slightly. Regional
disparities in coverage and expenditure are striking. Expenditure per beneficiary
was above the national average of 2090 € in seven northern and central regions, but
also in three southern regions.198 In the northern regions, 93% of all municipalities
offer SAD services, as compared to only 84% of the central and 78% of the southern
municipalities.199 Intensity of SAD services tends to be low: In the few regions that
offer personal home care services the average weekly service provision amounts to
only 3 h.200
4.3.1 Providers of Home Care Services
4.3.1.1 ADI Services
The local health units ASL are in charge of delivering or purchasing health-related
home care services.201 Formal home care services can be provided either directly by
195
In 2011–2012, the decline in coverage rates extended to six regions (Liguria, Lombardy,
Tuscany, Marche, Latium, and Basilicata), and to one of the Autonomous Provinces, for details
cf. Barbabella et al. (2015), p. 21.
196
Barbabella et al. (2015), p. 21 (table 1.2); in general, higher intensity is correlated with a lower
number of beneficiaries, Barbabella et al. (2013a), p. 17, table 1.
197
The mix between coverage and service intensity varies greatly between regions, cf. Gori and
Rusmini (2015a), p. 150 f.
198
Average expenditure ranged from 4626 € (Aosta Valley) to 1119 € (Molise), for details
cf. Barbabella et al. (2015), p. 22, table 1.3.
199
Barbabella et al. (2013a), p. 18 f.
200
Pesaresi (2007), p. 1 ff.
201
Tediosi and Gabriele (2010) p. 5.
the territorially competent public entity (in general the distretto sanitario, the local
articulation of the local health units ASL) or indirectly as externalized services
entrusted to third parties which provide the services ”on behalf” and on account of
the public institution in charge. The first model (direct provision) is present in all
regions except Lombardy which has developed a system based on vouchers. The
second model relies on private providers, for profit as well as for non-profit.
Non-profit providers prevail in the field of social care services, while in the
provision of social health services both types are present. Most private providers
operate on a local scale rather than on a national scale (e.g. some cooperatives based
in the Lombardy region).202 The regions are responsible for the quality control of
services supplied by private accredited providers.
4.3.1.2 SAD Services
SAD services are provided almost exclusively under direct public responsibility
a pubblica), but in most cases, the provision of services is externalized,
(titolarit
based on contracts and agreements the municipality has concluded with social
cooperatives, volunteer associations or enterprises. These arrangements allow a
greater number of beneficiaries to receive home help services at the same tariff as
charged by the municipal services.203 Local rules regarding the provision of home
help services are defined by the municipality which also contracts the home help
providers. In some cases, the SAD service is organized at the inter-municipal level
or in coordination with the healthcare system, based on an agreement between
municipalities and the local health units ASL.
Due to the financial restrictions of the municipalities SAD services have not
expanded in a significant way. This is one of the reasons why a lot more frail elderly
persons are attended by private “family assistants” than by the SAD services.204
4.3.2 Integration of ADI and SAD Services
The coordination between nursing care and home-help services for dependent
persons has been the focus of an integrative approach of healthcare and social
services. However, examples of effectively integrated home care packages, com-
bining ADI services and SAD services, are still scarce. In most regions the
participation of municipal social care services in ADI services is a marginal
phenomenon.205 So far, three regions in particular are known for their efforts in
202
For details see Fosti et al. (2012), pp. 59 f.
203
E.g. home help services provided in the city of Bolzano.
204
Grazioli (2012), p. 270.
205
Barbabella et al. (2013b), pp. 38 f.
282 E.M. Hohnerlein
providing an integrated approach (Veneto, Umbria and Tuscany).206 According to

national surveys, integration and coordination between healthcare and social care
services for the frail elderly tend to be particularly difficult.207 Among the core
elements of joint action is, on the one hand, the joint assessment of long-term care
needs, on the other the operation of the point of access at the local level; yet, both
elements still seem to lack active implementation in most of the regions throughout
their entire territory.208
4.4 Planning and Organization
4.4.1 General Criteria
The situation in home care services is characterized by a high level of institutional

fragmentation, as funding, planning and organizational responsibilities are spread
among regional and local authorities.209
The responsibility for the planning and defining of the organizational features of
social health services provision at home lies with the region. ADI services are
therefore regulated in a highly differentiated way in the different regions. Integrated
healthcare services—in particular as regards the social and health dimension
prescribed by the essential healthcare services (LEA)—have to be guaranteed by
the local health units as a universal service to the insured within its territorial scope
of application, according to D.P.C.M. of 12 January 2017, and following the
principles of efficacy and appropriateness.
However, the definition of “care services at home (cure domiciliari)” in
D.P.C.M. of 12 January 2017 is very broad, as it comprises also healthcare by
general practitioners at home. The concept of “integrated health services at home”
(ADI) defines three levels of health needs, depending on the individual health
condition and on the intensity, complexity and duration of the services needed.
The assessment of care needs is based on the calculation of a special indicator
(“Coefficiente di intensità assistenziale”, CIA). The indicator reflects the relation
between the number of days with at least one service accessed at home, and the total
number of days during which the health care service was in charge of the patient.
between three different profiles:
206
For Tuscany, see LR No. 60/2008, introducing the “societies for health” as a new model of joint
governance of medical and integrated social and healthcare activities, composed by public
consortia between the health units ASL and the municipalities; for details see AGENAS (2012),
p. 192 ff.
207
Gori and Casanova (2009), p. 41.
208
Barbabella et al. (2013b), pp. 36 ff.
209
Tediosi and Gabriele (2010); Vetrano and Vaccaro (2017).
– First level integrated care services cover patients without a critical clinical
condition or without highly complex symptoms but nevertheless necessitating
continuous care and interventions with an indicator between 0.14 and 0.3 in
relation to the complexity of the case.
– Second level integrated care services cover the same kind of patients with
continuous care needs and with an indicator between 0.31 and 0.5.
– Third level integrated healthcare services at home comprise those services
previously defined as “hospital-at-home” and consist of professional interven-
tions for patients with highly complex care needs due to specified clinical
conditions, and which present an indicator above 0.5, also due to the necessity
to provide to the family and/or the care-giver.
The relevant level has to be determined by the multidimensional assessment, and
presupposes a plan of continuous care, passing through the single access point
(PUA). In addition, further levels of health care at home can be distinguished: a
base level for healthcare of low intensity (CIA indicator below 0.14) which
normally does not involve joint interventions with social care services; and two
distinct levels of palliative care.210
According to regional legislation on social services, the planning and manage-
ment responsibilities for personal social services are shared between the region and
municipalities or their associations in various ways. Even within one region, service
provision may show considerable variation as the municipalities decide on whether
they deliver services directly or through contracted private providers. Little is
known about the organizational models used for SAD services.
4.4.2 Case Manager
In most of the regions, legislation provides for the nomination of a case manager as
the responsible professional within the team involved in providing the services.211
In cooperation with the general practitioner the case manager has to coordinate all
the interventions according to the individual care plan. Most frequently, the case
manager is nominated by the Assessment Unit (UVM), but in some cases (Emilia-
Romagna, Umbria) the nomination is the task of the operative unit in charge of
providing the services.
4.4.3 Voucher Models
Vouchers are an instrument in support of persons with special care needs aimed at
transferring public resources in a controlled way. Compared to the direct public
210
Art. 23 of D.P.C.M. of 12 January 2017; Vetrano and Vaccaro (2017) p. 12.
211
E.g. Abruzzo, Basilicata, Emilia-Romagna, Liguria, Molise, Tuscany, Umbria, Veneto etc.,
while Lazio, Apulia, Sardinia are regions without such legislation, see Pesaresi (2010), pp. 160 f.
284 E.M. Hohnerlein
provision of services, vouchers guarantee more freedom of choice to users while

generating less management burdens to the public administration. They have a long
tradition in Italian regions and municipalities.212
Lombardy has adopted two distinct voucher models for the purchase of profes-
sional home care services, the social healthcare voucher granted by the Region
through the local health units (ASL) for “integrated” social and healthcare ser-
vices,213 and the municipal social voucher.214 Until 2013, the use of vouchers was
limited to purchasing integrated home health and social care services from (public
or private) subjects with accreditation, but recently has been extended to residential
care services.215 The idea of the voucher is to combine the guarantee of home care
services and the free choice of beneficiaries with a view to the service provider.
Another intention of the voucher is to offer service provision in a uniform way, so
as to grant different kinds of medical and paramedical services together with social
care services like assistance with personal hygiene and help with daily activities, all
provided by the same service provider.
However, the freedom to choose the service provider from a list of providers
active in the respective district entails a number of tasks to be accomplished by the
beneficiary or his/her family members: contact the selected provider, verify the
availability of service provision and make arrangements on further steps to be taken
(administrative requirements, timetable etc.). Although this process can prove to be
difficult there is only a minority of ASL that accompany the beneficiary and the
family members by way of further counseling and recommendations, or by partic-
ipating in the search for the best care solutions and matching them with appropriate
providers and others involved in the care network.
4.5 Principles of Service Provision
In general, the principles governing the provision of services are laid down in a
Service Charter as a means of transparent information for the citizens.216 The
212
On the use of vouchers in the context of long-term care needs cf. Beltrametti (2013), pp. 191 ff.
213
“Voucher socio-sanitario”, introduced by deliberation of the Regional Council of Lombardy,
DGR No. 12902 of 9 May 2003. Vouchers are granted for three different levels of care intensity
and the corresponding economic value varies between 362, 464 and 619 € per month. In addition, a
new service entitlement (“credit”) was introduced in 2003 for the purchase of health services of a
lower intensity than the first level voucher for integrated care, but in 2008 this type was made
available under the same conditions than the traditional voucher. For details see Giunco (2011).
214
The municipal “voucher sociale” is based on Law No. 328/2000 and consists in an economic
contribution for a prepaid professional service (ticket restaurant, laundry service, transport ser-
vice), cf. Circolare No. 6/2004 of the Regional Council of Lombardy. For care provided not by
professional staff but by informal family caregivers a different type of economic support (“buono
sociale”) can be granted.
215
Pesaresi (2010), p. 158 ff.; Region of Lombardy, DGR X/1185 of 2013.
216
Cf. Art. 13 (2) of Law No. 328/2000. The Charter is a necessary condition to obtain
accreditation.
Charters recall general principles for the provision of services, namely equality of
treatment, impartiality, efficiency, the right to transparent information on the pro-
cedures, the names of the responsible persons, the right to active participation,
continuity and reliability of the services, etc. The Charter defines which quality
standards of the services are to be guaranteed, the indicators to measure the
standards and the guarantee of indemnification if the quality standards are not
met.217
In case of ADI services, patients are in principle free to choose among different
services providers, including accredited private health service providers. In case of
personal social services the degree of freedom of choice depends on the manage-
ment decisions of the municipality. Options are restricted by reduced availability of
services and by waiting lists. Dependent elderly persons have to wait for about 3–6
months (in Lazio even up to 11 months) before they can get a place in residential
care, while waiting times for residential care homes for the autonomous elderly is
30–45 days.218
Freedom of choice is limited with regard to the selection of service providers
(if available) but does not apply for choice between services in kind and cash
services to organize informal or private professional care at home. Regional
legislation may substitute cash benefits for informal family care by services in
kind through service vouchers if adequate care standards are held at risk.219
4.6 Financing and Cost Participation of Beneficiaries
The distribution of costs between different public funds and the beneficiaries follow
a different pattern for ADI and for SAD services.
Home healthcare services (ADI) provided to patients by public providers and by
accredited private providers bound by contractual agreements are funded by the
local health units ASL according to regional legislation. Most of these services are
free, but certain types of healthcare services in the area of integrated healthcare and
social services, like services provided to the elderly at home by professional nurses,
require a cost participation of 50% to be borne by the beneficiary or by the
municipality. According to the revision of essential healthcare levels in 2017,
specific cost sharing arrangements apply for health services provided by profes-
sional nurses and professional carers at home following "protected discharging of
patients from hospital". The cost of such services is borne entirely by the National
217
See the quality standards in the Charter of Services of the Autonomous Province of Bolzano.
They relate to the timetable of service provision (and tolerated deviations), transparency as to the
availability of clear and updated information; specific care standards defined in cooperation with
the local healthcare services; service provision by qualified staff.
218
Sanita in cifre (SIC), 19 January 2012.
219
E.g. according to the legislation of the Autonomous Province of Bolzano, cash allowances can
be substituted by service vouchers.
286 E.M. Hohnerlein
Health Service during the first 30 days after discharging the patient, and by 50%
thereafter.220
By contrast, home-help services organized by the municipalities are considered
as “subsidized benefits” integrating social and health components aimed at persons
with disabilities or with limited autonomy. Access to such benefits and cost
participation of beneficiaries are determined by the revised ISEE rules regulated
by D.P.C.M No. 159/2013. The family unit taken into account to assess the
economic situation of the beneficiary consists of the spouse, children under
18, and non-cohabitating adult children if they are economically dependent, unmar-
ried and do not have any children of their own.221 If the assessed income is below a
certain limit, the service is provided either for free or for a minimum co-payment,
otherwise payments are graduated according to income and can be up to the full
service cost.222
5 Semi-Residential Care Facilities: Day Care Centres

and Services
5.1 Types and Objectives
Day care centres are intermediate facilities between home care services and full-
time residential care that have emerged in recent years in different regions, either as
part of health services, or as part of social services (e.g. South Tyrol). Denomina-
tions vary considerably according to regional legislation and to the target groups,
and capacities range between 8 and 25 persons.223 Day care centres (centri diurni)
as part of the healthcare system combine healthcare with social service components
and are a typical case of the so-called “integrated social and healthcare service
provision”. They are subdivided into centres for elderly persons with general
disabilities and in day centres for Alzheimer patients. Users are mainly elderly
persons with severe disabilities and social problems (lack of family support during
the day, lack of resources). Day care services can be linked to residential care
homes. The overall objective of semi-residential care facilities is to prevent full-
time institutional care, either as an alternative intervention to residential care or as a
temporary relief for family caregivers. Overall coverage has remained very modest
and does not reach the levels defined as essential levels of assistance.224
220
Cf. D.P.C.M. of 12 January 2017, Art. 22 (4); Vetrano and Vaccaro (2017), p. 11.
221
See Art. 6 (2), Art. 3 (5) of D.P.C.M. No. 159/2013.
222
For details see Gioncada et al. (2011).
223
Cf. for various denominations in 17 regions Gori et al. (2010), p. 104, table 6.
224
The nationally proposed coverage should provide 1.5 beds per 1000 senior citizens in centres
for dependent persons, and another 1.5 beds for 1000 senior citizens in Alzheimer centres. Most
regions have established their own regional targets. For the evolution of day care centres for
dependent persons (seniors and adults) cf. Pesaresi (2015), p. 197 ff.
5.2 Access and Availability
Day care centres are targeted mainly at persons with partial loss of autonomy at
various degrees with regard to instrumental daily activities. Admission requires that
ordinary home care services (ADI or SAD services) would not be sufficient to cope
with care needs, whereas adequate (informal) care services at home during the night
and during the weekend are available. Special Alzheimer day care centres are
targeted primarily at elderly patients with strong dementia syndromes accompanied
by behavioural disorders. The objectives pursued are to reduce the symptoms of the
degenerative processes, to improve the abilities to maintain social relations and to
reduce the stress for informal family caregivers.
Access to day care centres follows the admission procedure for either ADI
services or for SAD services and is subject to regional legislation. The Autonomous
Province of Bolzano provides services in day care centres as part of social home
care services, available for citizens of at least 60 years or presenting a certified level
of invalidity of at least 75%.
Day care centres provide personal social services as well as healthcare services.
Social care services offered at day care centres include services for personal
hygiene (like bath or shower services with assistance) mobility activities, social
and cultural activities, social support, but also training activities for informal family
caregivers. Healthcare services at such centres encompass medical services pro-
vided by professional nurses, rehabilitation services, treatment by a general prac-
titioner, podologic services, and include preventive interventions aimed at
activating residual capacities of the elderly.
Data on semi-residential care is fragmentary. In the period 2007–2014, 941 day
care centres for the elderly (with about 19,421 places) were registered, providing on
average 1.47 places per 1000 senior citizens.225 141 (with 2.511 places) out of the
931 day care centres were dedicated entirely to patients with Alzheimer or demen-
tia. Regional disparities are very common, not only as to the coverage but also as to
the number of places within day care centres (mostly ranging between 5 and
40 places) and the intensity of services provided to the beneficiaries. Average
assistance standards for dependent elderly persons amount to 81 min per day, in
case of Alzheimer Centres to 113 min per day. Most regions provide opening hours
for 5 days a week, whereas daily opening hours range between 6 and 10 h.226
225
Pesaresi (2015), p. 204.
226
30 hours/week in the Autonomous Province of Bolzano and 60 hours/week in Emilia-Romagna.
Cf. Pesaresi (2015), p. 207.
288 E.M. Hohnerlein
5.3 Financing and Cost Participation
In the case of social services, tariffs are set by regional legislation and depend on
the type of centre and the intensity of services. The average tariff per diem in day
care centres for dependent elderly persons is 49.12 €, and 61.53 € in Alzheimer
centres.227
Cost participation on the part of beneficiaries is subject to means-testing. The
general criteria are set by national legislation, but graduations linked to income
brackets or income limits can be determined by the regions. 228 For access to such
services and cost participation on the part of beneficiaries the revised ISEE rules
apply, as is the case with community home care services.
Different rules apply in case of semi-residential care provided as integrated
social healthcare services. The essential levels of healthcare benefits defined at
the national level distinguish between different beneficiaries: In case of services
provided for adults with long-term care needs, the share of the public healthcare
system amounts to 70% of the costs, in case of elderly persons with long-term care
needs, the share amounts to only 50%.229 The remaining quota is at the expense of
the local authority or the beneficiary. Depending on the economic situation of the
beneficiaries and their family household, private contributions are required.230
6 Nursing Homes and Residential Care
Like home care and day care services, residential care is provided mainly by the
healthcare system. Residential care is still not very common and the very last resort
when home care and day care services are not available or inadequate in view of
specific long-term care needs, in particular in more severe cases or when permanent
monitoring by professional staff is required. A major reason for putting a dependent
person in residential care is the absence of a family caregiver or the circumstance
that home care services cannot guarantee the continuity of care at home. The
provision of residential services is indirectly influenced by regional planning
227
Cf. Pesaresi (2015), p. 215 ff. referring to the period 2007–2014.
228
Day care centres in the Autonomous Province of Bolzano have established minimum and
maximum tariffs with regard to the individual benefits. Users co-payment (for 8 h services) varies
according to the level of dependency, starting at 11 € for self-sufficient individuals, and ranges
between 14 and 42 € for partially self-sufficient individuals; in day care nursing homes the
maximum tariff per day is 54 € (2014).
229
So-called “quota sanitaria” under D.P.C.M. of 14 February 2001.
230
On average, cost participation of the beneficiaries (or the municipality) amounts to 24.59 € per
day (29.86 € in Alzheimer centres), cf. Pesaresi (2015), p. 216 f.
options for the hospital sector, for example the care provision following acute
hospital treatment, rehabilitation and long-term stay in hospitals (lungodegenza).231
6.1 Typology and Objectives
Residential care in institutional settings is available in different types and under

different denominations according to regional legislation.232 The main types of
residential care for the elderly with significant long-term care needs are the
so-called “residenze sanitarie assistenziali (RSA, nursing homes) providing
accommodation, healthcare as well as social care services for patients needing
general assistance with daily activities and basic medical care. The number of
inhabitants may range from 20 to 120 persons. Residential care for the dependent
elderly in smaller institutional settings of up to 30 persons is also provided under the
denomination of “casa protetta per anziani”.233 RSA services most commonly are
subdivided into two macro types of residential care services for patients with
elevated levels of dependency: the first type of RSA accommodates patients with
incurable chronic degenerative pathologies, or suffering from the consequences of
severe health incidents (like ictus cerebrale) that require constant medical assis-
tance, rehabilitation and care activities, while the second type is intended for
patients affected by severe dementia, not necessarily accompanied by other func-
tional impairments, yet often associated with hypermobility, especially at night.
Some regions have specialized RSA for Alzheimer patients.234
The second main type of residential care is for elderly persons without severe
limitations of their autonomy. The Residenze Assistenziali (RA) mainly offer hotel
services, social and cultural activities and some basic health services.235 Different
sub-types as to the dimensions and to the care needs of the target population exist.
The dimension of residential care facilities aimed at such mixed target groups can
range between very small communities of up to 12 persons (communit a alloggio) to
231
In 2010, the national average for providing care in these cases within the hospital sector was 0.6
beds per 1000 inhabitants, but in several regions (Piedmont, Autonomous Province of Trento,
Lazio, Molise) the rates were much higher.
232
For the terminology used in different regions cf. Masera et al. (2011), pp. 104–106; for the
evolution towards more flexibilization and diversification of services see Gori and Rusmini
(2015b), p. 165.
233
Protected facilities are defined as nursing care homes characterized by a medium intensity of
social care services and medium or high organizational complexity, cf. D.M. No. 308 of 21 May
2001 (Regolamento concernente “Requisiti minimi strutturali e organizzativi per l’autorizzazione
all’esercizio dei servizi e delle strutture a ciclo residenziale e semiresidenziale, a norma
dell’articolo 11 della legge 8 novembre 2000, n. 328”).
234
Liguria, Sicily.
235
Because of the lack of long-term care places in nursing homes it is not unusual for totally or
partially dependent elderly persons to stay in RA homes waiting to be admitted to nursing homes
better equipped to meet their needs. Cf. Long (2013), p. 29, No. 46.
290 E.M. Hohnerlein
120 persons (mostly denominated “case di riposo” as distinct from the RSA
facilities).236 A separate form of institutional care with a low intensity of care
services is supplied in family-like facilities, providing shelter for up to 6 individuals
(including disabled or elderly individuals), but for these forms of sheltered living
the structural requirements for residential care do not apply.
There is a third category of residential care institutions called “Residenze
Protette” (RP) or Residenze Socio-Sanitarie (RSS), offering accommodation
together with a high intensity of specific healthcare services; beneficiaries include
elderly persons in a temporary or permanent condition of dependency as well as
adults with disabilities. As these institutions primarily pursue healthcare objectives
(in particular rehabilitation) the services are provided as part of the healthcare
system, and the organizational and financial responsibility is assigned entirely to the
healthcare system.
Residential care institutions are regulated by regional legislation, except for
specific minimum structural standards which are subject to national regulation.237
That is why the structural conditions of residential care are rather similar all over
Italy, whereas the standards in terms of staff and quality of services as well as the
criteria for admission and the cost of services are very different from one region to
another.
The general objective of residential care is to accommodate patients that are
unable to remain in their own home because of their severely impaired health
conditions and autonomy. Residential care may be temporary or for an undefined
period of time, and must offer to its residents individualized care oriented at the
protection and improvement of the respective degrees of autonomy, at the mainte-
nance of personal interests and the promotion of wellbeing. Temporary residential
care pursues different objectives: It may be aimed at seeking continuity of care
following acute hospital treatment, providing assistance in cases of urgency or
cases of respite care for individuals normally cared for in their homes. The
conditions for these different types of short term residential care are determined
by the regions.238
236
D.M. No. 308/2001 distinguished between facilities with a community character, and facilities
with prevalent hotel services. The community care type is aimed at individuals with limited
personal autonomy, and characterized by a low intensity of care services, medium or high
organizational complexity; the residential facilities with prevalent hotel services are characterized
by a low intensity of care services, a medium or high organizational complexity, but the target
group are self-sufficient or partially self-sufficient individuals.
237
Cf. Ministerial Decree (D.M.) No. 308/2001; Art. 9 (1) of Law No. 328/2000; Art. 8-ter of D.
Lgs. No. 502/1992 as amended by D.Lgs. No. 229/1999.
238
The Autonomous Province of Bolzano offers short-term residential care (and transitional
residential care) for periods of between 4 weeks and 3 months, with a maximum of 6 months
per year, cf. Decision of the Provincial Council No. 2976 of 14 December 2009.
6.2 Access to Residential Care and Availability
Access to residential care for individuals with long-term care needs is managed by
the same procedure required for access to home care services or semi-residential
services, according to the findings effected by a multidimensional assessment unit
(unita di valutazione multidimensionale, UVM) and based on the needs defined in
the individualized care plan.239 Residential care in general requires a high level of
dependency and a level of permanent assistance that cannot be provided adequately
by a home care plan. Even if residential care has been recommended by the
competent assessment units, referral can be delayed due to waiting lists based on
rankings resulting from the assessment.240 By contrast, in Lombardy241 residential
care facilities (and day care facilities) are approached directly by the individual
patient (or family) presenting a request of admission accompanied by medical
certification from the general practitioner.
Admission to a nursing home for the elderly requires the stipulation of a
contractual agreement between the beneficiary and the provider, even if it involves
the provision of public services. This agreement determines the duties and respon-
sibilities of the involved subjects, in particular the obligation to pay the
corresponding fee and the deposit, to accept the internal rules (regolamento) and
the applicable Service Charter. Providers of residential care may also require the
signature of the municipality, and most commonly, the signature of a close family
member.242 Often, providers explicitly require the family member to sign the
admission contract as additional or subsidiary debtor for any unmet costs. The
interpretation of such agreements and the ensuing financial obligations of family
members are highly controversial and have provoked numerous court suits.243
At the end of 2013, 210,000 elderly in need of long-term care were accommo-
dated in residential care, more than half of them aged over 85 years, and most of
them women.244 Significant regional disparities persist, with scores above national
average in most of the northern regions.245
239
For an example of regional legislation see Veneto: LR No. 30/2009; Tuscany: LR No. 66/2008;
DGR (Tuscany) No. 370/2010.
240
For the system of waiting lists operated by the “Health Societies” of Florence and Pisa and by
the region of Veneto, see AGENAS (2012), pp. 197 f., 205.
241
LR (Lombardy) No. 3/2008 “Governo della regione dell Unita d’offerta sociosanitarie e
sociali”, and LR No. 33/2009 “Testo Unico delle leggi regionali in materia di sanita”. For recent
policy priorities in Lombardy, see Piano Socio-Sanitario 2010–2014.
242
Gioncada et al. (2011), p. 157 ff. The signature of the municipality is required for instance in
Lombardy, DGR No. 8496/2008.
243
For the controversial juridical questions and the judicial orientations cf. Long (2013), p. 69 ff.,
99 ff., 125–130. According to the Corte di Cassazione, the agreement on cost-sharing signed by
relatives can be void in cases where services complement a primary healthcare activity to be
granted without any co-payment, Cass. Civ. Sez. I, 22 March 2012, sent. No. 4558 (on long-term
care services in residential care for an Alzheimer patient).
244
ISTAT (2015b).
245
For the availability of beds in residential care and semi-residential care across Italy see ISTAT
(2014a), p. 129, table 4.4; Barbabella et al. (2013a), p. 20.
292 E.M. Hohnerlein
6.3 Residential Care in RSA Homes
In 2005, only 33% of residential care beds available were under public manage-
ment, while 43% were owned by third sector entities, and 22% by private commer-
cial institutions.246 Local authorities (and their associations) administer 14.9% of
residential care homes for the elderly, followed by the institutions of public
assistance and welfare (IPAB) which administer 13.5% of such homes, while the
local health authorities (ASL) are involved only to a modest degree (3.4%) in the
direct administration of residential care.247 The vast majority of residential care
services both for RSA and RA are provided by the private non-profit sector, but the
for-profit sector is increasingly involved, especially in the provision of RSA.248
All residential care homes for the elderly, public as well as private ones, require
accreditation if the services supplied are to be inserted into the public system of
service provision. As a consequence of accreditation, private providers have to
follow public law principles applicable to the administration of public social
services.249 The process of institutional accreditation of social health facilities
and the arrangements for their being monitored are currently under revision.
6.3.1 Features of RSA Services
RSA services are non-hospital facilities which are part of the network of territorial
services of the public health service. During the last decade, the growing regional
autonomy has brought forward multiple models of residential care, with a great
variety of definitions and denominations.250 Residential care comprises a package
of different services to be provided 24 h a day.
RSA provide accommodation, specific healthcare services (e.g. prevention of
decubitus, change of catheters etc.), social care and personal services for certain
activities. The services require a medium level of healthcare assistance together
with a high level of social care services and accommodation needs. According to
the Project “Tutela della Salute degli anziani” (1992), the national objective for the
number of beds in residential care facilities to be implemented until 1995 was 6% of
246
Tediosi and Gabriele (2010), p. 11 f. In some regions, the proportion of private service
providers is much higher, e.g. in Sicily (94%).
247
Pesaresi and Brizioli (2009), p. 58.
248
Long (2013), p. 33.
249
E.g. the administration has to respect the principles of cost efficiency, impartiality, transpar-
ency, equal treatment, etc. The principle of prohibition to interrupt a public service implies that a
client cannot be dismissed abruptly even if the contract with the user/client is terminated.
250
The current classification system adopted in the document of the Commission for the LEA
envisages four categories of residential care services: (1) sub-intensive care (hospice, coma etc.,
R1), residential care with a high level of healthcare integration (R2), residential care for patients
with senile dementia (R2D), and residential care with a low level of healthcare integration (R3),
cf. QMS No. 6/2010, p. 105.
the elderly aged 65 or more (¼ 420,000 beds), of which 2% (140,000) should be

guaranteed by RSA facilities. The target of 2% has not been adjusted subsequently,
and in practice the average coverage rate among the dependent elderly population
amounts to 1.7% only, with higher scores in northern and some central regions,
while southern regions have still very poor coverage rates (below 1%).251
Residential care in RSA homes must comply with several minimum require-
ments set at the national level to obtain authorization to operate. These require-
ments should guarantee common minimum standards:
– Minimum and maximum number of beds: between 20 and 120 beds, organized
in units for 10–20 patients.252 One group (with 10–15 places) out of four units
must be reserved for patients with dementia.
– Type of rooms: RSA must offer single bedrooms as well as, 2-, 3- and 4-bed
rooms;
– Community Services in each unit (for 10–20 persons), including a living room/
social space, kitchen, dining room etc.
– Space for therapies;
– Public spaces for social purposes (religious services, bar, etc.);
– Support services, like reception, kitchen, laundry, repository, rooms for the
staff, etc.
– Size of the rooms and total surface: minimum 12 sq. meters per person, 18 sq.
meters per two persons, and 26 sq. meters per three persons;
– Temperature: minimum 20 C in winter and not more than 28 C in summer;
– Technological and organizational requirements;
– Service requirements according to the intensity of care (including general
medical care and specialized medical care), nursing care, rehabilitation, consult-
ing services, dietary services, personal care, preventive services, occupational
healthcare, transportation, religious services, etc.
– Medical direction;
– Professional staff, covering nurses, rehabilitation therapists, educators, social
care workers, psychologists and dieticians, etc. Depending on the intensity of
care required, different numbers of staff are required.
6.3.2 Quality Standards and Quality Assessment
The minimum structural standards for any authorization are defined by national
legislation (D.P.C.M. of 22 December 1989). These standards provide for up to
four-bed-rooms.
The different regions have adopted standards of services based on a variety of
criteria, including structural standards, organizational standards (e.g. certain
251
Ministry of Health (2010) QMS, p. 107; Barbabella et al. (2015), p. 24.
252
DPR 14 January 1997.
294 E.M. Hohnerlein
protocols on nursing care activities, e.g. for the prevention of decubitus) or certain
procedural requirements. A major field of regional autonomy is the definition of
minimum requirements as to the professional staff available to provide services.253
The indicator most commonly used is a time indicator on the minutes of services
per day, expressed as the global amount of potential services according to the staff
working in the RSA in the course of 24 h. The mean standards of services used
range between 90 and 150 min per day, but regional differences are high. In general,
smaller-sized nursing homes need to adopt higher standards in order to guarantee
the necessary shifts over the course of 24 h and for the coordination of services.
According to the different intensity of long-term care needs of different groups
of patients, the LEA Commission proposed service intensity standards for medical
care (between 300 and 80 min per day), for professional nurses (24 to 8 h), global
service periods (from about 210 to 100 min per day and patient), including service
periods of professional nurses (between 90 and 20 min per day and patient).254
Regional legislation has adopted different quality standards for the staff required in
residential care and for the monitoring of required standards. Lombardy for exam-
ple, a region providing for more than one third of all beds in residential care for the
elderly with long-term care needs, strengthened monitoring mechanisms and
improved quality standards in residential care by economic incentives for providers
that complied with regional guidelines. Other regions left the monitoring of quality
standards to the control mechanisms applied during the process of institutional
accreditation.255 It has been observed, however, that accreditation procedures for
residential and semi-residential services have been delayed, especially in the
southern regions of Italy.256
6.4 Planning and Organization
The local authorities responsible for the management of social interventions and
services (municipalities, associations of municipalities) decide on the authorization
and accreditation of services and facilities offering residential care (and semi-
residential care) under public administration or of other contracted providers
supplying such services (in regime di convenzione), according to regional planning
(the regional social plan) and to the requirements established by regional legisla-
tion, based on national minimum standards or adding further requirements in view
of the local situation.257
253
Chiatti et al. (2013), p. 80 ff. (comparing 10 regions).
254
Ministry of Health (2010) QMS, p. 110.
255
For a detailed analysis cf. Masera et al. (2011), p. 108 ff.
256
See Masera et al. (2011), p. 108.
257
Art. 11 Law No. 328/2000.
6.5 Financing and Cost Participation
Funding of residential care is partially based on allocations from the National

Dependency Fund passed on to Regional Dependency Funds, on ear-marked
regional taxes and partially on private co-payments by beneficiaries and their
families.
6.5.1 Cost Sharing at the Institutional Level
According to D.P.C.M. of 14 February 2001 (Atto di indirizzo e coordinamento in

materia di prestazioni socio-sanitarie) the costs for long-term care services in
residential and in semi-residential facilities is based on a system of cost sharing
between the National Health Service, the client and the social services of the
municipality (which intervene in case of insufficient financial resources of the
patient). The system of cost participation in residential care services has been
precised by D.P.C.M. of 2017 on the definition of essential levels of benefits in
healthcare. Residential care services for elderly persons in a condition of depen-
dency who require elevated health protection with continuous health services and
the presence of nurses for 24 hours are in general provided for up to 60 days; this
type of extensive health care services are to be covered entirely by the National
Health System; by contrast, long-term health services, including services for
functional recovery and stabilization, and for respite care offered to care-givers,
are to be covered by the National Health System at a quota of 50% of the costs of
the service.258 A framework decree on the remuneration system for residential care
services has never been adopted.259 The remuneration is therefore regulated by
regional acts, based on different criteria.260
In general, the monthly expenditure of residential care institutions per client is
correlated to the intensity of care services needed, with amounts varying widely:
For example, the Marche region has, for the majority of residential care homes,
defined service standards between 50 and 100 min per day and patient,
corresponding to mean global tariffs of about 80 € per day (of which 33 € are
borne by the regional healthcare system and 33–50 € by the patient). A small
portion of beds are for patients with particularly complex healthcare needs, with a
defined service standard of up to 140 min per day and patient, corresponding to a
258
Cf. Art. 30 D.P.C.M. of 12 January 2017. Under the previous regulation, an equal 50–50 sharing
of costs between the healthcare and the social service sector has been adopted only by 30% of the
regions (Campania, Molise, Apulia, Sardinia, Sicily, Veneto), while except for Lombardy, all
other regions have adopted a healthcare quota of above 50% (79–82% in Umbria), cf. Pesaresi
(2011), pp. 137 ff., 139.
259
The tariffs for residential care for the elderly should have been defined according to Art.
8-sexies of D.Lgs. No. 502/1992.
260
Brizioli and Masera (2011), p. 124 ff.
296 E.M. Hohnerlein
daily tariff of about 134 € (of which 41.25 € are charged to the patient). Most
regions have adopted service standards of between 90 and 120 min per day and
patient which can rise to more than 150 min in case of special care needs. On
national average, the global daily tariff established for residential care was 106.31€
in 2011, which ranged from 80 € in Molise up to 147.50 € in Aosta Valley.261 In
general, during the first 30–60 days the tariff for accommodation is at the expen-
diture of the healthcare service, according to the intention to support so-called
“protected discharges from hospital” and to activate home return programmes.
Most regions impose the application of maximum limits for the accommodation
(hotel) services by accredited providers.262 Tariffs charged for residential care
increased from 2007 to 2012, by 18.5% for the minimum tariffs and by 12.8% for
the maximum tariffs.263
According to statistical data, on average the public health system covers 51% of
residential care costs for the elderly; the patients and their families cover 46.6%,
while the municipalities assume the remaining 2.4%. The average monthly cost for
residential care was 2951 € in 2006 (with a share of 1505 € for the ASL, 1375 € for
the patient, and 71 € for the municipality).264
6.5.2 Private Co-payment Obligations
Law No. 328/2000 left it for the regions to determine the criteria for the cost
participation of patients in residential care.265 Most regions have adopted legisla-
tion that set the “social quota” of residential care tariffs to be borne by the patients
at 50%. This increases the cost burden for patients with more intensive care needs.
Some regions operate modulations of the cost participation quota for the patients
which may be increased in case of additional services provided (as in Liguria)266 or
reduced by means-tested contributions at the expenses of the region (as in Friuli,
Aosta Valley or in the Autonomous Province of Bolzano).267 Cost participation
required from patients ranges between 26 and 65 € per day, and some regions, in
particular regions with special autonomy status, provide cash benefits to reduce the
financial burden for patients. Cost sharing of the social quota by the municipalities
261
Both regions apply a single tariff for residential care, but most regions apply tariffs which
differentiate according to the increase in intensity of care requirements. For details see Brizioli and
Masera (2011), p. 127 ff.
262
Except for Lombardy and the Autonomous Province of Bolzano, cf. Brizioli and Masera
(2011), p. 130.
263
Pasquinelli and Rusmini (2013), p. 95, at fn 2.
264
Pesaresi (2011), p. 137.
265
Art. 8 (3) of Law No. 328/2000.
266
DGR No. 862/2011.
267
Cf. Brizioli and Masera (2011), p. 130 f.
is a rare exception. Several regions define different levels of cost participation

either based on fixed income brackets or on a model of linear reductions.268
If the patients’ resources are insufficient the municipality has to intervene. The
means-testing criteria for this intervention used to vary greatly according to
regional legislation. The parameters for the assessment of the economic situation
of beneficiaries of services provided in residential care (RSA) have been unified
across Italy by the revised ISEE system under D.P.C.M. No. 159/2013 and defined
as “essential levels”, so that regional deviations should be excluded in the future.
The 2013 ISEE reform abolished means-testing limited to the sole resources of
the beneficiary. The new rules increase financial liability of the family unit in cases
of permanent residential care: the assessment of income is extended to
non-cohabitating adult children.269 The new concept considers the differences
between RSA residents with adult children liable to maintenance obligations and
those without children.270 To avoid fraudulent/circumventing behavior, donations
out of the real estate assets of the patient given after the first request for admission
to an RSA are counted as patrimonial assets of the donor. Likewise, donations
effected within the 3 years preceding the request of admission will be disregarded if
the beneficiary of the donation is liable to pay alimony.
7 Family Care and Support for Informal Care
Although informal care is extremely important in Italy, the data available are
limited. It has been estimated that 3–3.5 million people provide informal care to a
dependent relative, and according to surveys, 11% of persons aged 50+ (about 2.35
million) provide informal care to a dependent older relative.271 The gap between
the demand of care services, modest public service provision and the reduced
capacities of families to care for dependent family members has been filled by
low-cost migrant care workers, mainly women from less developed countries.272
268
Pesaresi (2011), pp. 152–154.
269
Art. 6 (3) lett. b of D.P.C.M. No. 159/2013. Exemptions apply in cases of presumed hardship,
namely when the adult child or a member of his or her family unit has a certified condition of
disability, or when the absence of economic or affective bonds has been established by a court or
public authority.
270
On the maintenance obligations of adult children in Italy see Hohnerlein (2009), pp. 139, 162 ff.
271
Tediosi and Gabriele (2010), p. 10. For the diffusion of different forms of individual or
collectively organized support activities cf. Di Rosa et al. (2015), p. 38 ff.
272
The countries of origin have changed over the past years. Today most migrant care workers
come from Eastern Europe (Ukraine, Moldovia, and Romania), see Costa (2013), p. 225.
298 E.M. Hohnerlein
7.1 Care Leave to Assist Severely Handicapped People
In the framework of legislation introduced in 1992 for the protection of the

handicapped273 and in 2000 to promote the reconciliation of family and working
life duties,274 different leave provisions have been introduced to support care
provided by family members. In addition, parental leave provisions and further
reductions of working time have been extended to support parents of handicapped
children.
7.1.1 Care Leave to Provide Care for Adult Family Members
Each parent of a severely handicapped child of adult age is entitled to short periods
of paid care leave of up to 3 days per month in order to provide assistance to the
child. The entitlement extends to spouses, relatives by blood or marriage up to the
second degree. If the parents or the spouse of the person affected by a severe
disability are more than 65 years old or are themselves affected by an invalidating
illness, or have died, the leave entitlement extends to relatives by blood or marriage
up to the third degree. This entitlement cannot be recognized for more than one
person at the same time.275
In case of death or the insurgence of a severe illness of a family member, or if
therapeutic interventions are necessary, the spouse, and relatives up to the second
degree are entitled to a paid leave of 3 days per year.
Longer periods of care leave are regulated as either unpaid leave for serious
family reasons or as paid care leave for up to 2 years. Relatives by blood or
marriage up to the third degree and members of the family household are entitled
to an unpaid leave of 2 years in order to assist family members needing care and
assistance or in situations of particular pathologies.276 This unpaid leave of up to
2 years does not require cohabitation of the caregiver.
An extraordinary paid leave of up to 2 years can be claimed by salaried workers
assisting a close family member who is severely handicapped.277 The person to be
assisted must be officially acknowledged as a severely disabled person.278 In
general, no paid leave is granted if the handicapped person is living in institutional
/residential care.279 The entitlement is granted to certain relatives based on priority
273
Law No. 104/1992.
274
Law No. 388/2000, Art. 80 (2).
275
Art. 33 Law No. 104/1992. The same entitlement applies if assistance is provided to a child
older than 3 years.
276
Art. 4 (2) of Law No. 53/2000. Paid care leave for informal family care was first introduced by
Law No. 388/2000, Art. 80 (2).
277
Art. 42 of D.Lgs. No. 151/2001, as modified by D.Lgs. No. 119 of 18 July 2011. This paid leave
is not to be confounded with the unpaid leave of 2 years for grave family reasons.
278
Art. 3 of Law No. 104/1992 (handicap con connotazione di gravit a).
279
An exception to this requirement applies if the presence of the caring family member is
requested by the healthcare facility, D.Lgs. No. 119/2011.
criteria. The personal scope of application has been extended several times by the
Constitutional Court.280 The first priority is given to the spouse, whereas other
relatives are entitled in the absence of any relative of preceding priority, in the
following order: parents, children, brothers or sisters, and finally relatives by blood
or marriage up to the third degree. Except for the parents, the entitlement of the
spouse and any other relative requires cohabitation at the same address (but not
necessarily in the same home). The duration of the paid leave is for a maximum of
2 years for the same handicapped individual, and for the whole working life of a
caring relative.281 Periods of unpaid care leave taken by the same worker are to be
deducted from the maximum amount of 2 years. The severe handicap must have
persisted already for 5 years prior to the request for leave.282
Periods of paid care leave are counted as contribution periods for pension
purposes. This applies not only to the short monthly leave periods of 3 days but
also to the extraordinary leave of up to 2 years.283 No figurative contributions are
recognized for working caregivers who leave employment for longer periods or for
unpaid leave arrangements.
The amount of the benefit granted during the leave corresponds to the last salary
before the leave, and is subject to an upper limit which is annually adjusted. In case
of leave periods of less than a year, the maximum benefit is adjusted proportionally.
The maximum annual benefit was set at 35,673 € (net benefit without additional
social security contributions) in 2015.284 According to INPS data for 2015, the
annual expenditure for paid leave in the private sector amounted to about 1.3 billion
€ and to 1.8 billion € in the public sector.285
7.1.2 Extension of Parental Leave
While parental leave periods of 10 (or 11 months in case of the additional daddy
month) can be claimed up to the age of 8 of the child, the period of paid parental
leave is restricted to only 6 months during the first year of a child. When the
personal income of a parent does not exceed certain limits the income replacement
of 30% of the previous salary is granted for the entire parental leave. For parents of
a severely handicapped child, the paid parental leave is extended up to the third
birthday of their child at the same replacement rate of 30%. Alternatively, the
280
See Corte cost. sent. No. 233/2005 (brothers and sisters); Corte cost. sent. 203/2013 (relatives
by blood or marriage up to the third degree).
281
Art. 42 (5) of D.Lgs. No. 151/2001.
282
Exceptions apply for severely handicapped children in case of adoption or pre-adoptive
placement.
283
Art. 33 (3) Law No. 104/1992; Art. 42 (5-ter) D.Lgs. No. 151/2001.
284
The total amount including social security contributions was set at 47,446 € in 2015 (provi-
sional data), cf. Seghieri (2015), p. 781.
285
INPS (2016), p. 77 f. About 904,000 benefits for paid leave were registered in 2015.
300 E.M. Hohnerlein
parents can claim a paid reduction of 2 h of their daily working time until the third
birthday of the child.286 The periods corresponding to the parental leave are also
counted as contribution periods for pension purposes.
7.1.3 Special Protection Under Labour Law
Salaried workers caring for a severely handicapped person can choose, if possible,
the job location which is closest to their home. Caring relatives are entitled to refuse
to be transferred to another location without their consent.287
Night shifts cannot be required if a salaried worker is assisting a handicapped
relative.288
7.2 Social Services to Support Informal and Migrant Care
Some regions started to promote “care networks” by supporting informal home

care, either provided by family caregivers,289 or provided by family assistants and
family helpers (badanti). The region of Piedmont integrated such services into the
essential levels of assistance at regional level and reimburses the costs incurred to
families for such services.290
At the same time, regional policies are promoting the training of caregivers
(aimed at social workers as well as family caregivers). A wide range of institutions,
like local authorities, training agencies, trade unions, associations and private social
welfare organizations, offer training courses to enhance the professionalization of
informal care and improve the overall quality of care. Topics include
– Italian language and Italian law courses for immigrant care workers, and
– Training on personal care, nursing care and psychological care.
Pioneering regions like Emilia-Romagna have assigned to formal home-care
providers the task of providing support for informal caregivers through tutoring,
consulting, and assisting them with their activities. The tutoring activity is a means
of supporting the family caregivers, but also a means of supervising compliance
with the individual care plan.
286
Art. 42 (1) and (2) of T.U. on maternity and paternity ¼ D.Lgs. No. 151/2001 with subsequent
modifications.
287
Art. 33 (5) of Law No. 104/1992, as modified by Art. 24 (1) of Law No. 183/2010.
288
Cf. Law No. 903/1977, Art. 5 (2), as modified by Law No. 25/1999, Art. 17 (1), and amended by
D.Lgs. No. 151/2001, Art. 53 (3) and D.Lgs. No. 66/2003 (Art. 11).
289
E.G. for Emilia-Romagna, LR No. 2 of 28 March 2014.
290
E.g. the highly disputed legislation of the Piedmont Region. Although the regional government
tried to deny such reimbursement and to shift responsibility to local authorities, the Regional
Administrative Court (TAR) revoked the decisions on non-reimbursement.
Other regions also started to implement provisions for the training of and
information to informal caregivers, including migrant family assistants.291 Training
courses required are between 100 (Marche) and 400 h (Abruzzo, Apulia), but
irregular workers are, in general, not covered.292 To improve the minimum stan-
dards in professionalization and to increase the quality standards in informal care
arrangements, some regions (Emilia-Romagna, Lombardy) provide measures of
supervision, monitoring and consultancy of informal family assistants as part of
home care services, thereby creating a linkage between formal and informal
caregiving networks.293 Support for informal family caregiving in view of
guaranteeing quality standards is provided furthermore by regulations on the
assessment and certification of care-related competences of family assistants.294
In view of supporting family caregivers, relief/respite care services are provided
through temporary admission to residential care. These services can be overnight
placements or residential care during the weekend.
8 Conclusions and Future Prospects
The protection of long-term care needs in Italy has to face a number of challenges.
Sustainable long-term funding for reliable and affordable services for the frail
elderly is crucial in times of persisting cuts in social spending, most commonly at
the local level. Means- and asset-testing rules have been tightened, and the only
national cash benefit granted as a universal legal entitlement is not adapted to
individual long-term care needs. At the institutional level, the regions are struggling
to implement an integrated approach for non-residential community-based home
care services, linking healthcare with social care services, but also informal private
care provided by family assistants and family members with public services.
Fragmentation and regional and local disparities persist. Cash benefits still prevail,
in spite of repeated declarations to strengthen social home care and community
services. One of the reasons is that regional cash benefits can be modified and
reduced much more easily than a service structure. Another major challenge is the
absence of defined legal entitlements and of “essential levels” in the field of social
care services. Access to home care services, but also to residential care is not based
on an individual right but subject to the availability of funds, often restricted by
waiting lists.
291
E.g. Lombardy, Sicily (DGR 885/2010). In 2013, a majority of 14 regions had implemented
minimum standards for professional training of family assistants, and some others had activated
minimum qualification requirements on an experimental basis, cf. Rusmini (2013), p. 160 ff. For
quality standards in informal care cf. also Casanova (2012), p. 7.
292
See Rusmini (2013), p. 161, table 2, p. 162.
293
In particular by professionals acting as tutors for families with a member with long-term care
needs.
294
E.g. Piedmont, Tuscany; for details see Rusmini (2013), p. 164.
302 E.M. Hohnerlein
Traditionally, the responsibility for the frail elderly needing long-term care has
been left to the family, either as providers of informal personal care (including
migrant care) or as financially liable family members. The recent reform on means
and asset testing for the access to and cost participation in professional social
services even increased the financial responsibility of children for their dependent
parents in residential care. A special feature of support for family caregivers is the
right to paid care leave of up to 2 years for salaried workers. The personal scope of
application of this measure has been extended several times by the Constitutional
Court.
Between 2007 and 2015, long-term care issues had disappeared from the polit-
ical agenda. Public responsibility for long-term care remained modest or was
reduced, as care burdens have been shifted back to the families: Public funds for
long-term care have been cut, tariffs of residential care increased, co-residence of
informal family assistants has been replaced by services provided on an hourly
basis, the informality of private family assistants has increased, as well as the
waiting times for accessing cash benefits and professional services.
Since the end of 2015, long-term care issues are back on the political agenda.
Public policies tend to follow strategies already pursued in the healthcare sector:
National health priorities have been directing public funds towards the most
desperate cases and to individuals with a most severely impaired health condi-
tion.295 The tendency to concentrate interventions on most severe forms of disabil-
ity rather than on age-related impairments was confirmed by law 112/2016 on
assistance to persons with severe disability without family support. A similar
tendency can be averted in the 2016 agreement between the Italian Government
and regions on the allocation of the National Dependency Fund (FNA) and on the
definition of a national Plan on long-term care dependency for 2017–2019.296 The
agreement defines new criteria for the distribution of the Fund based on uniform
classification instruments which should replace the various criteria in regional
classification systems after an experimental phase. The 2016 agreement also
describes different priority areas for public interventions which should prepare
the pathway to the future definition of essential levels in long-term care. Actions
to be funded by the FNA comprise (1) increase in assistance to promote continuity
of home-based care as an absolute priority, (2) support for the person dependent on
long-term care and his/her family, also by conditional cash benefits for the purchase
of home care services, based on the individual assistance plan, (3) support for the
person dependent on long-term car and his/her family by respite residential care
(ricoveri di sollievo) complementing home-based care. The strategy seeks to
295
Persons in a vegetative state, in a state of minimal consciousness, mostly due to severe brain
injuries, and to people with severe neuromuscular degenerative diseases such as ALS, cf. Ministry
of Health (2011).
296
Agreement (Intesa Stato Regioni) of 3 August 2016, adopted as Decreto Interministeriale (not
yet published): at least 40% of the FNA must be directed towards persons with most severe
disabilities (Art. 3). The same priority rule had been enacted in the 2015 agreement, cf. Decreto
Interministeriale of 14 May 2015, G.U. n. 178 of 3 August 2015.
implement gradually uniform instruments to assess long-term care needs, to iden-

tify the beneficiaries in a gradual way (starting with those most severely affected by
disabilities and impairments), to define gradually the essential level of benefits for
home care assistance and for respite care, together with monitoring and evaluation
systems.
Concentrating interventions on the most severe cases of disability is a preferred
crisis option in front of insufficient financial resources. It means that essential levels
of benefits and services will be constructed gradually, in line with the funding made
available. This approach tends to underestimate long-term care needs linked to
old-age, and puts at risk less severe cases of care needs among the elderly.297
Despite some positive prospects in the commitment towards an inclusive, inte-
grated system for long-term care needs significant risks persist not only for the frail
elderly, their living conditions, health and dignity, but also for their family mem-
bers who may face serious risks of poverty and social exclusion.298
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Long-Term Care in the Netherlands
Tineke Dijkhoff
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310
1.1 Long-Term Care in the Netherlands: An Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310
1.2 The Concept of Long-Term Care from the International Perspective . . . . . . . . . . . . . . 312
1.3 Structure of the Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313
2 Reforms of the Care System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313
2.1 The Introduction of Regulated Competition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313
2.2 Ongoing Reforms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 314
3 Public Insurance for Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 316
3.1 Development of the Long-Term Care Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 316
3.2 Personal Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 318
3.3 Entitlement to Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 318
3.4 Care Provided Under the Awbz and the Wlz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 319
3.4.1 Different Kinds of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 319
3.4.2 Personal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 319
3.4.3 Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 320
3.4.4 Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 320
3.4.5 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321
3.4.6 Residence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321
3.4.7 Other Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321
3.5 Indication of the Kind and Amount of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322
3.6 Wlz Care in Kind in an Institution, in Kind at Home, or as a Personal Budget . . . . 323
3.7 Personal Budget . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324
3.8 Financing and Administration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 325
3.8.1 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 325
3.8.2 Administration and Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 326
4 The Social Support Act 2015 (Wmo 2015) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 327
4.1 Development of the Wmo 2015 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 327
4.2 Personal Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329
4.3 Entitlement to Wmo 2015 Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329
4.4 Services Provided Under the Wmo 2015 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 331
4.4.1 Policy Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 331
T. Dijkhoff (*)
Utrecht University School of Law – International and European Law, Utrecht, Netherlands
e-mail: a.a.dijkhoff@uu.nl

https://doi.org/10.1007/978-3-319-70081-6_8
310 T. Dijkhoff
4.4.2 Tailor-Made Provisions: A Shift from Individual Entitlements to Municipal

Policy Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 332
4.4.3 Indication of the Kind and Amount of Support Regarding Tailor-Made
Provisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 334
4.4.4 General Provisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 335
4.5 Personal Budget . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 336
4.6 Informal Care and Volunteer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 337
5 The Health Insurance Act (Zvw) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339
5.1 Development of the Zvw . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339
5.2 Entitlement to Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 340
5.3 Services Relating to Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 341
6 Care Providers: Eligibility and Quality Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 343
6.1 Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 343
6.2 Quality Standards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 344
7 Supervision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 346
7.1 Many Different Actors and Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 346
7.2 The Health Care Inspectorate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 347
7.3 The Dutch Health Care Authority . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 348
8 Concluding Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 349
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 350
1 Introduction
1.1 Long-Term Care in the Netherlands: An Overview
With the coming into effect of the Exceptional Medical Expenses Act (Algemene
wet bijzondere ziektekosten, Awbz) in 1968,1 the Netherlands were seen as the first
country to have introduced long-term care insurance. However, as the name of the
act already indicates, the Awbz was not a long-term care insurance pur sang:
entitlement to provisions did not primarily depend on the duration of the need of
care. In fact, it was meant to cover the high costs of nursing, treatment and personal
care that were not covered by health care insurance and that were generally not
affordable by individuals. The services provided under this act included, in broad
outlines: care for disabled persons, care for the chronically mentally ill, and care for
the elderly. Typically, these kinds of care are most often provided for a prolonged
period of time. As a part of an extensive reform in the fields of long-term care,
social support, and youth care, the Awbz has been abolished as of 1 January 2015
and replaced by the Long-Term Care Act (Wlz).2 The personal scope of this act is
1
Exceptional Medical Expenses Act (Algemene wet bijzondere ziektekosten, Awbz),
14 December 1967.
2
Long-Term Care Act (Wet langdurige zorg, Wlz), 3 December 2014.
Long-Term Care in the Netherlands 311
restricted to persons who are in need of intensive care and support around the clock
on a permanent basis.
The Wlz is not the only Act that covers long-term care. Other important
regulations in this respect are the Social Support act 2015 (Wmo 2015) and the
Health Insurance act (Zvw).3 The Zvw covers the costs of medically necessary care,
including certain medical devices, care for sensory disabled persons, nursing and
care at home, hospitalisation, as well as the first 3 years of intramural mental health-
care. The Wmo 2015 covers domestic help, services and support in order to enable
individuals to take part in society and to live independently for as long as possible,
and support of informal caregivers. The boundaries between the different regula-
tions have proved to be difficult to set. As a result, several provisions have been
removed from the one regulation and added to the other in the course of time. Apart
from these three acts, there are some other regulations that are relevant in relation to
long-term care at specific points, such as the Income According to Work act,4
focusing on reintegration into the labour market, and some fiscal advantages
relating to a handicap or chronic illness. The Act on Compensation of Chronically
Ill and Handicapped Persons, providing income compensation for persons with a
chronic disease or handicap has been abolished in 2014.
Many parties are involved in the administration, management, designation,
provision, and supervision of long-term care. The general responsibility of the
care provided under the Wlz and the Zvw is in the hands of the government,
while the local communities are responsible for the care and services provided on
the basis of the Wmo 2015. The health insurance companies are assigned to
implement the Wlz and the Zvw, however, in practice they delegate their tasks
regarding the Wlz to the so called care offices. Different institutions are responsible
for the financial administration of the different acts, including the National Tax
Office, the health care insurers, the National Health Care Institute (Zorginstituut
Nederland), and the Central Administration Office (Centraal Administratie
Kantoor). The Wmo budget is primarily administered by the municipalities. Fur-
thermore, several councils and inspectorates play a role in the quality control of
care provided and in the supervision of the different actors. The tasks and respon-
sibilities of the various parties will be explained in the sections concerned.
The multitude of different actors and stakeholders connected to different regula-
tions reflects the complexity of the Dutch health care system of which long-term care
is an integrated part. In practice, an insured person can receive care or services
addressing one specific disorder or limitation on the basis of different acts at the
same time, irrespective of the duration. For example, until 2015, a person who has
had a stroke might first have received medical care in a hospital (Zvw), then nursing
and personal care at home (Awbz), a shower chair (<6 months: Zvw; >6 months:
3
Social Support Act 2015 (Wet maatschappelijke ondersteuning 2015, Wmo 2015), 9 July 2014;
Health Insurance Act (Zorgverzekeringswet, Zvw), 16 June 2005.
4
Income According to Work Act (Wet inkomen naar arbeid), 10 November 2005.
312 T. Dijkhoff
Wmo); speech appliances (Zvw), a bath lift (Wmo) and domestic help and/or social
support (Wmo). As of 2015, this person may first receive medical care in a hospital
(Zvw), then nursing and personal care at home (Zvw) as well as domestic help
and/or social support (Wmo 2015). When it becomes clear that the person will need
intensive care on a permanent basis, an indication for the Wlz may be issued. The
Wlz care—either in an institution or at home—then includes domestic help, but
support to participate in society retains to be covered by the Wmo 2015. This
example illustrates that the demarcation of the different acts is sometimes problem-
atic. Obviously, for insured persons, it is not always easy to know which act(s) apply
in their specific situation and to which authority(ies) they should turn to get the care
needed. The government continuously has sought to draw clear lines between
different regulations. The 2015-reforms have indeed sharpened the line between
the Wlz and the Wmo 2015, but created turbidity between the Wmo 2015 and the
Zvw by moving nursing and personal care at home to the latter while domestic help
and social support is covered by the Wmo 2015. However, since long-term care is
integrated in different acts, demarcation problems will continue to exist.
1.2 The Concept of Long-Term Care from the International

Perspective
Different countries use different definitions for long-term care, which often do not
concur. For the purpose of comparable international data collection, the OECD has
developed a conceptual framework for long-term care. Within this framework,
long-term care has been defined as ‘a range of services for persons who are
dependent on help with basic activities of daily living (ADLs) over an extended
period of time’.5 This definition has also been adopted by the European Commis-
sion. From this perspective, the assessment of a persons’ need for long-term care is
based on the degree of difficulty they experience in carrying out ADLs or IADLs.6
Although this concept of long-term care is a very broad one and leaves open, for
example, the interpretation of ‘an extended period of time’, it may serve as a
guideline for the identification of relevant national legislation on long-term care.
In the Netherlands, the relevant laws do not contain a definition of long-term care,
and until the 2015-reforms a principle distinction was made neither between short-
term and long-term care nor between sickness and invalidity. This has partly
changed as of 2015, since the scope of the Wlz is limited to persons whose need
5
OECD (2008), Colombo et al. (2011), p. 39; European Commission (2008), pp. 3–4.
6
Activities of Daily Living (ADLs) are self-care activities that a person must perform every day
such as bathing, dressing, eating, getting in and out of bed or a chair, moving around, using the
toilet, and controlling bladder and bowel functions; these include Instrumental Activities of Daily
Living (IADLs), which are activities related to independent living and include preparing meals,
managing money, shopping for groceries or personal items, performing housework, and using a
telephone, European Commission (2008), p. 3.
of severe care is supposed to be permanent. Nevertheless, long-term care is being

provided by the Zvw and the Wmo 2015 as well. In general, (health)care is
considered to become long-term care when (further) recovery is not to be expected,
but the borderline is blurred and the concept of ADLs is not explicitly used as a lead
for care entitlements. In fact, lengthy ADL assistance may be provided under all
three acts. However, considering its focus on intensive care of a permanent charac-
ter, the Wlz plays the most prominent role when it comes to lengthy ADL assistance.
In addition, aiming at participation in society, the Social Support Act mainly deals
with IADL assistance. The Health Insurance Act mainly covers the medical com-
ponent of long-term care, which is often interwoven with ADL assistance.
1.3 Structure of the Chapter
For a good understanding of the different regulations in the field of long-term care
and of their interrelatedness, a brief account of recent developments that have
affected the care system as a whole will be provided in Sect. 2. In Sect. 3, the
main act relating to long-term care will be described in detail, namely, the Long-
Term Care Act (Wlz). To give a clear insight in the 2015 reform measures, this
section will first provide a description of the Exceptional Medical Expenses Act
(Awbz), to be followed by an overview of what has changed in the Wlz. Section 4
will describe the Social Support Act (Wmo) and the changes incorporated in the
Wmo 2015. As a result of the recent reforms, this act has become of increasing
importance for persons in need of (I)ADL assistance. Subsequently, in Sect. 5 the
Health Insurance Act (Zvw) will be discussed. As mentioned above, this act
contains several provisions relating to long-term care and it is, at points, closely
connected with the Wlz and Wmo 2015. The Sects. 6 and 7 deal with quality
standards and supervision of care provided under the Wlz, the Wmo 2015 and the
Zvw. Section 8 closes this chapter with some concluding remarks.
2 Reforms of the Care System
2.1 The Introduction of Regulated Competition
Steadily rising costs, increasing complexity, and conflicting institutional interests

have placed the Dutch care systems under great pressure in the course of time.
During the past two decades, many reports and recommendations have been written
by public advisory boards and organisations of interest groups.7 Although the
7
For example: SER (2000), College voor Zorgverzekeringen (2003), Raad voor de
Volksgezondheid en Zorg (2008), Werkgroep Langdurige Zorg (2010), Raad voor de
Volksgezondheid en Zorg (2005).
314 T. Dijkhoff
reports reflect different views and opinions on the future of (long-term) care and
social support, there seemed to be consensus about one thing in particular: action
was needed to create a sustainable and coherent care system and social domain.
Subsequent governments have tried to respond on topical issues such as the ageing
population, the increasing administrative burden on care professionals, the rise in
the number and cost of medicines and medical devices, the growing awareness and
expectations of citizens regarding the quality of their lives, and, on top of that, the
economic downturn.
With the adoption of the new Health Insurance Act (Zvw) in 2005 an important
step was taken in the revision of the care system. The idea of the reform was to
create a self-regulative and efficient care system that would ensure a balance
between the different stakeholders in the entire care sector. Apart from cost
containment, the reform was intended to strengthen the position of clients compared
to that of care providers and insurers, to strengthen the position of insurers com-
pared to that of care providers, and to increase the playing field of the providers.8
Market processes were introduced in order to create demand-driven care instead of
the existing supply-steered system and to stimulate cost reduction. The role of the
government was to provide for the legal frameworks to safeguard quality, safety
and accessibility of health care, as well as supervision. A regulated competition
model was created that covered care provided both under the Zvw and the Awbz,
and as of 2015 the Wlz; this model is summarised in Box 1.
2.2 Ongoing Reforms
In view of increasing efficiency and further cost containment, subsequent reforms

aimed at a stricter division of cure, care, and support.9 The Exceptional Medical
Expenses Act (Awbz) was to be limited to care that was not in the first place aimed
at cure, but rather at the prevention of illness and at the well-being of the patient.
The Health Insurance Act (Zvw) was to focus exclusively on cure, providing
medical care and treatment aimed at the recovery, or at least improvement, of the
patient’s health condition, while the Social Support Act (Wmo) was to cover care
and services with the purpose of promoting a persons’ ability to do things indepen-
dently and to participate in society. Unfortunately, social policies have proved to
change with the political colour of each government, often resulting in unfinished
reforms, a waste of public money, uncertainty about the (near) future on the part of
citizens in need of care, care providers, and other stakeholders within the social
domain, as well as the emergence of new problems.
The reforms of the government in charge from November 2012 until February
2017, focused on decentralisation rather than on the division of cure, care, and
8
TK (2000–2001), pp. 19–24; Sauter (2009), pp. 7–8.
9
Mot (2010), pp. 55–56.
BOX I: The regulated competition model
“The regulated competition model

The pathway to the 2006 Health Insurance Act and the Health Care Market Regulation Act began with
small, gradual steps that were initially seen as reversible. These were followed by several important
measures that helped to establish regulated competition in the health care system.
Key characteristics of the current system
By introducing the regulated competition model, the Dutch government sought to create an effective,
affordable system that would provide quality health care to all residents of the Netherlands, irrespective of
age, health status or income (VWS, 2004c). Three market parties can be distinguished in the health care
sector: health care providers, health insurance companies and consumers. These parties operate, for their
part, in three submarkets (Figure 5.2.1). Like all markets, the health care market involves supply and
demand:
– in the health care delivery market, patients seek health care services and health care providers deliver
them,
– in the health care purchasing market, health care insurers purchase services from health care
providers;
– within integrated care arrangements, health care providers may also purchase services from other
health care providers,
– in the health care insurance market, insurance companies offer health care policies and consumers
purchase these.
The various submarkets are interlinked: if one market is to function properly, all the others must be
working. The aim is that insurance companies purchase good-quality, reasonably priced services in the
health care purchasing market, that consumers weigh up those services to judge which insurance
company they prefer and then choose a company and a policy option, and that these market transactions
have a combined effect on the services that the consumers ultimately choose and utilise in the health care
delivery market. If policyholders are dissatisfied, they are to signal that to insurance companies, for
instance by changing to another company. This, in turn, should induce insurance companies to buy better-
quality services via the purchasing market (Figure 5.2.1).
Figure 5.2.1: Schematic representation of the subsidiary markets in the health market
Health insurers
Health insurance market Health care purchasing market
Consumers / patients Health care providers
Health care provision market
There is no completely free market in the Dutch health care system. It is a market with regulated
competition. This means that buyers and sellers are free to participate in the market, but that their
freedom is circumscribed by legislation and regulations designed to counter unwanted effects and to
safeguard the public objectives of quality, accessibility and affordability. Two examples of regulation are
the mandatory insurance policies and the acceptance requirement – all residents are required to purchase
the state-defined basic insurance package and all insurance companies are required to accept all
applicants for the basic package.”
Source: Westert, G.P. et al. (eds.), Dutch Health Care Performance Report 2010, Bilthoven: RIVM 2010, pp. 206-207.
316 T. Dijkhoff
support. Accordingly, parts of long-term care have been transferred from the Awbz
to the Wmo 2015 and the new Youth Act as of 2015. This means that the
municipalities, responsible for the implementation of these acts, play a more
prominent role in the provision of long-term care. Furthermore, some other services
covered by the Awbz have been transferred to the Zvw, notably nursing at home.
The remaining part of the Awbz, care for the most vulnerable elderly and persons
with a severe handicap or disorder who need constant care of a permanent character,
has been moved to the new Long-Term Care Act (Wlz); the Awbz has been
abolished per 1 January 2015. These major changes are accompanied with drastic
budget cuts, especially regarding social support.
The government at that time communicated that the adoption of the Wlz was a
first step towards a more efficient and qualitative better long-term care for persons
in need of long-term mental health care, notably the most vulnerable elderly and
handicapped persons.10 The second step would involve an investigation of possi-
bilities to distinguish between these groups. The idea was that severe care for the
elderly could be transferred to the risk bearing care insurance (Zvw), while for the
relatively small group of persons with a permanent—life long—need for care a
uniform national purchase framework could be created (public or private) or a
further shift towards the municipalities could be realised. A decision regarding this
second phase of the reform would not be taken before the national elections in
2017.11
3 Public Insurance for Long-Term Care

3.1 Development of the Long-Term Care Insurance
The Exceptional Medical Expenses Act (Awbz) of 1968 was the result of a lengthy
discussion on the creation of a public insurance scheme for exceptional and severe
health risks. The main idea behind the design of a separate scheme next to health
insurance was to provide for the eventuality that any citizen might, at certain points
of their lives, encounter a need for long-term care due to a protracted illness or
disorder. It had been recognised that almost nobody would be able to bear such
exceptional medical expenses and that it would not be possible to insure against the
risk of long-term care on an individual basis on the private market.12 The first draft
of the act envisaged an integral provision for handicapped and chronically ill
persons and was proposed to be named the General Act on Severe Medical Risks.
However, during the parliamentary discussion the emphasis on the medical aspects
of the insurance was not found appropriate, as it was also intended to cover care for
10
TK (2013–2014), pp. 104–106.
11
EK (2014–2015), p. 99.
12
Schut and Van den Berg (2010), pp. 412–413; SER (2008), p. 139.
the mentally handicapped. As a start, the new insurance covered hospitalisation

after the first year, accommodation in nursing homes, and in-patient care for the
mentally handicapped, which was to be extended step by step to other provisions.
Indeed, during the subsequent two decades, the insurance package was expanded
considerably.13 For example, in the 1970s, medical homes for children, day-care,
surrogate family homes, and prevention programmes were brought under the Awbz,
to be followed in the 1980s and 1990s by psychiatric care, personal care at home,
domestic care and assistance, and several other services. An important development
was the introduction of personal budgets in 1994, which highly contributed to the
freedom of choice and self-determination of patients.
The many changes that took place in the course of time also included changes in
the management and administration of the scheme, resulting in a complicated
system with many different actors.14 In the meantime, the expenditure on long-
term care covered by the Awbz had increased significantly, from 0.8% of the GDP
in 1968 to 4.0% in 2005.15 The sharp increase of costs, especially since 2001, was
only partly due to the expansion of services; other factors played an important role
as well, such as the growing number of persons in need of long-term care due to
population ageing, broadly defined entitlements, and a lack of incentives for cost-
containment owing to the structure of the scheme. In response of the various reports
and advices, a new trend set in, this time towards a limitation of entitlements and
cost-cutting, mainly involving the (re-)allocation of services to the health care
insurers and municipalities; further, as mentioned above, the regulated competition
model was introduced.
New reforms were formulated in 2011, aiming again at a better and affordable
future for long-term care.16 Measures included changes in the management and
administration to make the scheme less complicated and to create more cost-
awareness, and to effect a restructuring of supervision as well as a drastic reduction
of services. After the fall of the right-wing cabinet in April 2012, several cutbacks
were reversed again or softened, and alternative measures were included in the new
coalition agreement. A diminishing of the Awbz to more or less its initial scope was
envisaged: coverage of long-term in-patient care only. This has eventually led to the
adoption of the new Long-Term Care Act (Wlz) that came into force on 1 January
2015 and replaced the Awbz. During the transition period (until 31 December
2015), persons with an entitlement to Awbz care that had been established before
1 January 2015 and the duration of which continued to exist in 2015, retained their
care under the same conditions as in 2014 until the end of 2015 or until the
expiration of the entitlement.
13
State Secretary for Health, Welfare and Sport (2008), pp. 4–5; Schut and Van den Berg (2010),
pp. 415–425; SER (2008), pp. 140–141.
14
For a description of the development, see: Van der Most (2009), Pruijssers (2004).
15
Schut and Van den Berg (2010), pp. 417; SER (2008), p. 63.
16
State Secretary for Health, Welfare and Sport (2011).
318 T. Dijkhoff
3.2 Personal Coverage
The Awbz and the Wlz are statutory social insurance schemes, which implies that
every citizen is automatically insured.17 An insured citizen is any person who has
legal residence in the Netherlands, irrespective of their nationality or age, and
irrespective of income. Equal status is given to non-citizens who work in the
Netherlands and whose income is subject to Dutch income tax, for example,
cross-border workers. However, their partners and children (not residing in the
Netherlands) are not insured. Furthermore, pursuant to a decree, in specific cases
exceptions can be made, for example, for foreigners who are not legally residing in
the Netherlands and for their children. Lastly, equal status can be given on the basis
of an international treaty or a decision under international law.
3.3 Entitlement to Care
Under the Awbz, insured persons had a ‘right to preventive care and the provision
of medical treatment, nursing, and personal care’.18 Such care included services
with a view to retaining or restoring a person’s capacity for work or to improving
the living conditions, as well as social support. The actual entitlement to care was
based on the Governmental Decree on Care Entitlements Awbz containing a list of
six categories of diseases, disorders or limitations that are likely to be permanent,
the so-called ‘foundations’ for Awbz care.19 These foundations were formulated as
follows:
– Somatic disorder or limitation—physical disease, disorder or limitation, not
caused by a dysfunction of the nervous system or locomotor apparatus
– Psycho-geriatric disorder or limitation—functional disorder in the brain, gener-
ally related to old age
– Psychiatric disorder or limitation
– Mental handicap—limited intellectual or cognitive capability
– Physical limitation—irreversible physical limitations caused by a dysfunction of
the nervous system or locomotor apparatus
– Sensorial handicap—visual, auditive, or communicative handicap
On the basis of these foundations, the Awbz provided for different categories of
care described in the next section. Under the Wlz, the foundations for entitlement to
care have remained the same as under the Awbz, however, the qualifying
17
Article 5 of the Awbz and Article 2.1.1–2.1.1 of the Wlz regulate the personal coverage of the
insurance; Noordam and Vonk (2010), pp. 141–146.
18
Awbz, Art. 6(1), lapsed on 1 January 2015 (unofficial translation).
19
Besluit zorgaanspraken Awbz (Governmental Decree on Care Entitlements Awbz) of 25 October
2002, lapsed on 1 January 2015.
requirements have become stricter. This means that the insured person must have a
permanent need to: continuous supervision to prevent any escalation or serious
harm, or 24 h per day care in the immediate vicinity because the person does not
have the ability to ask for help and needs constant support, nursing, or takeover of
self-care and/or tasks.20 Conditional to the right to care is an indication decision of
the Centre for Care Assessment (Centrum indicatiestelling zorg, CIZ) that assesses
whether an insured person qualifies for Wlz care (previously Awbz care), and
indicates the kind and amount of care needed.21
3.4 Care Provided Under the Awbz and the Wlz
3.4.1 Different Kinds of Care
Chapter II of the Governmental Decree on Care Entitlements Awbz described in

more detail the different kinds of care and services to be provided.22 The provisions
were divided into five main clusters: personal care, nursing, support, treatment, and
residence. These care clusters were called the five ‘functions’ of the Awbz. Apart
from these functions, the insurance covered a number of other provisions that did
not fit into the main functions. The Wlz covers largely the same functions, but only
for persons who need constant care on a permanent basis. This means that if the
need of care is of a passing nature or constant care around the clock is not necessary,
the insured person does not qualify for Wlz care. The care will then be provided
under the Zvw and/or the Wmo 2015. In the following sections, the care provided
under both the Awbz and the Wlz are described pursuant to the five Awbz functions.
3.4.2 Personal Care
Personal care involves support with, or takeover of, activities of daily living in
relation with one of the foundations listed in Sect. 3.3, aiming at counterbalancing
the reduced ability to look after oneself.23 This includes getting into and out of bed
or a chair, bathing, dressing, bed-making, using the toilet, changing incontinence
products, eating, taking medicines, doing exercises, etc. The care also includes the
encouragement or teaching of clients, for example by a therapist, in order for the
former to carry out tasks themselves. For persons who qualify for the Wlz, personal
20
Wlz, Art. 3.2.1.
21
For the indication procedure, see Sect. 3.5.
22
Beerepoot (2010), pp. 46–52.
23
Governmental Decree on Care Entitlements Awbz, Art. 4, lapsed on 1 January 2015.
320 T. Dijkhoff
care is part of the insurance package. For persons who are not in need of prolonged
constant care, personal care has been moved from the Awbz to the Zvw as of 2015,
with the exception of some forms of personal care related to cognitive limitations
that are transferred to the Wmo 2015.
3.4.3 Nursing
Nursing entails nursing related to a somatic or psycho-geriatric disorder or limita-

tion or a physical handicap, aiming at the recovery or prevention of deterioration of
the disorder, limitation or handicap.24 Nursing activities involve, for example,
dressing wounds or giving injections and include necessary supplies such as sterile
gloves, pincers and surgical drapes. The services also include advice, instructions
and information to clients with chronic symptoms on how to deal with the illness,
either on an incidental or periodical basis. Furthermore, it may include the moni-
toring of a patient’s health condition and guidance for the latter to practice self-care.
The Awbz covered nursing care in an institution as well as at home. As of 2015,
nursing at home is subsumed under the Zvw. For persons eligible to care under the
Wlz, nursing is included in the Wlz insurance package, also if it takes place
at home.
3.4.4 Support
Support covers activities for insured persons with moderate to severe limitations as
a result of a somatic, psycho-geriatric, or psychiatric disorder or limitation, or a
mental, physical or sensorial handicap in order to prevent them from suffering
neglect or being admitted to an institution.25 Activities relate to the ability to do
things independently, to move, to cope psychologically, to remember and to orient
oneself, or to cope with problem behaviour. The various activities focus on pro-
moting and retaining the clients’ ability to manage their own lives and on compen-
sating their inability to cope. They include physical, cognitive and mental support;
for example, help with getting dressed, the practicing of skills, assistance with
planning activities and organising a household, and other daily matters. In the case
of behavioural disorders, such support also includes supervision and intervention.
As of 2015, these kinds of support have been transferred from the Awbz to the
municipalities on the basis of the Wmo 2015.
24
25
3.4.5 Treatment
Treatment, under both the Awbz and the Wlz, entails specific medical, behavioural-
scientific or paramedical treatment for persons residing in an institution, provided
by that institution and aiming at the recovery or prevention of deterioration of a
somatic or psycho-geriatric disorder or limitation or a mental, physical or sensorial
handicap.26 It includes, for example, pharmaceutical care, dental care, physiotherapy,
the use of a wheelchair, as well as medical devices and clothes where necessary in
view of the treatment.27 For persons who do not qualify for the Wlz, the function
‘treatment’ is not relevant since institutional care is exclusively covered by the Wlz.
3.4.6 Residence
Residence involves a person’s residence in an institution providing comprehensive

care, consisting of personal care, nursing, support, and/or treatment, of an insured
person with a somatic, psycho-geriatric, or psychiatric disorder or limitation, or a
mental, physical or sensorial handicap.28 A prerequisite for an entitlement to
residence under the Awbz was that the insured person was dependent on a protected
living environment, a therapeutic social climate, or permanent supervision for at
least 3 periods of 24 h per week. Under the Wlz, the requirements have been
tightened to the need for constant care of a permanent nature. In all other cases,
previous Awbz care has to be provided at home on the basis of the Wmo or the Zvw.
Apart from ‘residence’, the Awbz provided for ‘short-term residence’ Short-term
residence comprised the stay in an institution for 3 periods of 24 h per week
maximum and was only available in order to relieve the family member or any
other informal caregiver providing the usual daily care.29 As of 2015, short-term
residence for persons who do not qualify for the Wlz is transferred to the Wmo
2015. Under the Wlz, it is covered to a certain extent, notably when the insured
person has chosen to receive the care at home with a personal budget (see Sect. 3.6).
3.4.7 Other Services
In addition to the abovementioned services, the Awbz also covered transport to and
from the institution where a person receives support and/or treatment, clinical items
(for example, anti-decubitus matrasses, crutches), a sign language interpreter,
neonatal PKU screenings, and vaccinations.30 For persons who are covered by the
26
27
28
29
Governmental Decree on Care Entitlements Awbz, Art. 9a, lapsed on 1 January 2015.
30
Governmental Decree on Care Entitlements Awbz, Art. 10, 11, 12, 17, 18, lapsed on
1 January 2015.
322 T. Dijkhoff
Wlz, things mainly remain the same. For those who do not qualify for the Wlz, the
medical related services have been subsumed under the Zvw, while the different
forms of support, such as transport and sign language interpreter, have become the
responsibility of municipalities under the Wmo 2015.
3.5 Indication of the Kind and Amount of Care
The kind and amount of care a person is actually entitled to under the Awbz and the
Wlz is decided by the Centre for Care Assessment (Centrum Indicatiestelling Zorg,
CIZ) on the basis of objective and integral needs assessments.31 The CIZ is an
independent national institution that finds its legal basis in Article 9a of the Awbz,
as of 2015 in Article 7.1.1 of the Wlz. It has a main office and, currently, 10 regional
offices. Its decisions do not affect the financial position of the Centre, and the
claimants are not charged for the procedure. An indication decision is an adminis-
trative decision against which a complaint can be lodged to the CIZ. An appeal
against the decision of the CIZ on the complaint can be lodged with a district court.
The court of second and of last instance for social security matters is the Central
Appeals Tribunal.
Until the abolishment of the Awbz, in-patient care have been indicated on the
basis of so-called ‘care severity packages’; these were well-defined integral care
packages, differentiated according to the different institutions (e.g. nursing homes,
elderly homes, institutions for the physically handicapped, mental health care
institutions) and the kind and amount of care needed. For each care severity
package a fixed budged had been specified, which ‘followed’ the client.32 The
specification and maintenance of the different packages was performed by the
Dutch Health Care Authority (Nederlandse Zorgautoriteit) in cooperation with
several stakeholders, including the CIZ, health care insurers, care providers, and
clients’ interest groups. The idea behind the care severity packages was to better
connect the care provided with the needs of the client.33 Furthermore, the system
was supposed to provide care recipients with a better insight into the care they were
entitled to, in order to better connect the allowance paid to care providers to the care
that was actually provided, and to stimulate an efficient purchase of care in the long
run. In a first evaluation of the system by the Health Care Authority regarding 2009
several problematic issues were observed. For example, signals were received that
care providers allocated their clients to higher care severity packages than indicated
31
Beerepoot (2010), pp. 60–61; SER (2008), pp. 147–148; Klosse and Noordam (2010),
pp. 404–407.
32
The different packages and the corresponding amounts are published on the website of the Dutch
Health Care Authority (NZa.nl). For clients with an indication dated before 2015, this method
retains in place during the transition period.
33
See, for example: NZa (2011).
by the classification of the CIZ, and that in some cases risk selection took place.34
Also, the transparency of the procedure and the available information for care
recipients was found insufficient.
For out-patient and home care, the care or services needed were indicated
according to the Awbz functions ‘personal care’, ‘nursing’, ‘support’, and ‘treat-
ment’. Each function was subdivided into several classes depending on the severity
or specific characteristics of the care needed. For example, the ‘personal care’
function was subdivided into four classes: basic personal care which can be
planned; basic personal care, including care on call; basic personal care in combi-
nation with specific care, such as wound dressing; and basic personal care including
pharmaceutical tele-care. The CIZ assessed how many hours of which classes of
care a person was to be granted per week on the basis of extensive policy
regulations.35
As of 2015, these regulations have been adapted to the Wlz. Indication does no
longer take place in terms of care severity packages, but on the basis of care profiles
developed by the Health Care Authority. Which care is needed considering the
indicated profile is to be defined by the care provider and the client.36 This new
indication method is meant to put the needs and possibilities of the clients more at
the centre and to give care professionals more leeway to provide tailor made care
and support.
3.6 Wlz Care in Kind in an Institution, in Kind at Home, or

as a Personal Budget
The Wlz provides more freedom of choice for the insured person than the Awbz
did. A person, who has received an indication decision of the CIZ that allows for
care on the basis of the Wlz and designates the applicable care profile, may choose
in which form they would like to realize the indicated care37:
– residence in an institution
With this option, the institution provides for all types of care and services
covered by the Wlz, as described in Sect. 3.4.
– care at home organised by a care institution
This option is called a ‘comprehensive care package at home’. In fact, it
involves the same care package as provided in an institution, but delivered
at home.
34
NZa (2009), Schut and Van den Berg (2010), p. 431.
35
The categorization and policy regulations are published on the website of the Dutch Health Care
Authority (NZa.nl).
36
Letter of 27 June 2014 from the Minister of Health, Welfare and Sport to Parliament (2014), p. 2.
37
Wlz, Article 3.3.1.
324 T. Dijkhoff
– a personal budget
Wlz clients may choose to receive an amount of money with which they can
purchase the care themselves (see further Sect. 3.7).
– a modular package at home
This implies a combination of care in kind at home and a personal budget,
according to the choice of the client. This option did not exist under the Awbz.
3.7 Personal Budget
The main idea behind the personal budget is for persons in need of care to keep their
autonomy and promote their participation in society, as well as to stimulate
innovative forms of demand-driven care. Budget holders can freely choose from
whom they wish to buy care and services, either from care institutions and self-
employed care professionals, or from relatives, acquaintances, or other
non-professionals. The Awbz stipulated that by ministerial decree it could be
regulated that the Health Insurance Board supplied subsidies to allow insured
persons to provide themselves with the care they needed.38 This was effectuated
through the Awbz Subsidy Regulation and a subsidy ceiling was set each year.39
Thus, a strict legal right to a personal budget did not exist and when the set amount
of subsidy was exhausted, the personal budgets could be stopped. Furthermore, the
Regulation included several exceptions, for example, persons who needed care for
less than 1 year and persons with an indication for mental health care did not qualify
for a personal budget.
Over the years, the personal budget has gained in popularity. This has especially
held true since a change of the regulation in 2003, with budgets having since been
paid to the budget holders themselves instead of directly to the care providers. The
number of budget holders grew from 13,000 in 1998 to 148,000 in 2008, which was
about 20% of the total number of Awbz clients.40 Expenses increased from 412.5
million euros in 2002 to 2159.9 million euros in 2010.41 In an attempt to put a stop
to the rising costs, the government elected in 2011 prepared a bill that would limit
the possibility of a personal budget to persons with an indication for the most severe
care package only. At the same time, when the subsidy ceiling was met in the course
of 2012, it decided not to extend the budget—in contrast to the previous years. This
provoked a lot of protest from budget holders, clients’ organisations, and care
38
See, for example: Beerepoot (2010), pp. 57–58; Mot (2010), pp. 38–41; SER (2008),
pp. 149–151; SCP (2011).
39
Regulation AWBZ subsidies (Regeling subsidies AWBZ), 5 December 2005, para. 2.6, lapsed on
1 January 2015.
40
SCP (2011), pp. 17–18.
41
Zorginstituut Nederland, Exploitatie AWBZ 2002-2014 (Exploitation AWBZ 2002–2014),
available on the website of the Zorginstituut. The total Awbz expenses in 2010 amounted to
24,472.7 million euros.
providers. After the early fall of the government in 2012, the bill was declared
controversial and later withdrawn by the new government that worked out the 2015-
reform in which the entitlement to a personal budget has been retained.
In contrast to the Awbz, the personal budget has been incorporated in the Wlz as
a right, but at the same time the qualifying requirements have been tightened.42
These requirements for a great part involve administrative obligations for the
budget holder, such as the timely provision of a care plan, submission of care
contracts and a written motivation of why the budget holder opts for the personal
budget instead of for care in kind. It is than assessed whether the budget holder is
actually capable to manage the budget and purchase care, either without or with the
help of a representative. An important change is that the budget is no longer be paid
to the budget holders themselves, but to an earmarked account of an institution that
has been assigned to administer the budgets on behalf of the budget holders. The
budget holders have to send the contracts with their care providers to the adminis-
trator for approval in advance and forward the accounts payable in accordance with
the approved contracts. This way, verification takes place ex ante instead of ex post.
This rather laborious working method has been put in place in order to prevent
fraud. Amounts that are not used during the period for which the budget was given,
or that cannot be justified, have to be refunded.
3.8 Financing and Administration
3.8.1 Financing
The Wlz is funded through income-related premiums, personal contributions, and

state subsidies, as was the Awbz. Citizens pay an income-related premium, col-
lected through their employers, benefit agencies or pension funds or, in the case of
the self-employed, directly through the tax authorities; this premium is deposited in
a specific Wlz fund.43 The government fixes the tariff for this premium annually; in
2014, it amounted to 12.65% of income and was subject to a ceiling; the income
ceiling was set at € 33,363. Article 3.2.5 of the Wlz further regulates—as did the
Awbz—that entitlement to care can (by decree) be made dependent on personal
contributions, which are in fact stipulated for most services, concerning both
in-patient care and care at home. The contributions vary according to the group to
which the insured person belongs (e.g. the elderly, mentally handicapped, etc.), the
care provided, and the income and assets of the insured person and his or her
spouse. Different contribution regimes are set depending on whether the care is
42
Wlz, Article 3.3.3.
43
Financing of Social Insurance Act (Wet financiering sociale verzekeringen) of 16 december
2004, Art. 89.
326 T. Dijkhoff
Table 1 Awbz/Wlz funding

2003 2008 2013 2015
Premium 15,515.0 14,213.7 17,729.5
Personal contributions 1577.3 4774.3 2085.2
State contribution 4200.0 1591.7 3732.8
Other sources 37.9 20.9 23.3
Total revenues 21,330.2 20,600.6 23,570.8
Total expenses 20,964.4 21,938.1 27,578.1 19,500
1 ¼ 1 million euros
Source: Website of the Ministry for Health, Welfare and Sports: www.zorgcijfers.nl
realized in kind in an institution, in kind at home, or through a personal budget.

To give an indication, the own contributions for clients with a personal budget
amounted from € 22.60 to € 832.60 per month in 2015. The remaining part of the
funding consists of state subsidies originating from general taxes. In 2011, 68% of
fund sources came from premiums, 8% from personal contributions, and 24% from
the state (Table 1).
3.8.2 Administration and Management
The general responsibility for the Awbz and the Wlz as a whole rests with the
central government. The implementation of both acts, however, was/is designated
to the health care insurers. These insurers are private companies that have a licence
to insure damages following from accidents (including employment accidents and
occupational diseases) and sickness according to the Health Insurance Act (Zvw).44
A health care insurer that wants to implement, next to the Zvw, also the Wlz for its
clients, has to apply to the Dutch Health Care Authority. Once admitted, the insurer
has to fulfil all obligations following from the Wlz and the underlying regulations.
The insurers do not manage their legal task themselves, but have mandated the
Regional Care Offices to implement the Wlz for all clients in their respective
regions. These Care Offices need an official permission of the government to
perform the tasks following from the Wlz; permission may be withdrawn if they
fail to comply with certain requirements. The care offices have to make sure that
clients receive the care they are entitled to according to the indication decision.
They purchase care from care institutions, both for clients who choose for residence
and for care at home. On the basis of the decision of the Centre for Care Assess-
ment, clients can indicate the care provider(s) of their choice from a list of
contracted providers, and the Care Office is to organise the care for their clients
accordingly. If a client has chosen for a personal budget of which they can purchase
44
Awbz, Art. 1(c) in conjunction with Zvw, Art. 1(b). See also: Beerepoot (2011), pp. 13–14.
care at home themselves, the care office has to remit the set amount for the indicated
care profile.
The National Administration Centre is designated as the central institution to do
the administrative work relating to the care and services provided by the Wlz.45 The
specific tasks of the National Administration Centre include the payment of costs
following from the care and services covered by the Wlz to the care providers on
behalf of the health care insurers (or, in practice, on behalf of the Care Offices).
Furthermore, the Centre is assigned to determine and collect the income-related
personal contributions to be paid by the care recipients, and to deposit the contri-
butions into the Wlz fund (previously the Awbz fund). The determination of the
contributions takes place on the basis of income data provided by the Tax Office. A
decision of the Administration Centre on the personal contribution is an adminis-
trative decision against which a complaint can be lodged to the Centre itself. An
appeal against the decision of the Centre on the complaint can be lodged with a
district court. The court of second and of last instance is the Central Appeals
Tribunal.
The Wlz fund is managed by the National Health Care Institute (Zorginstituut
Nederland), which replaced the Health Care Insurance Board (College voor
Zorgverzekeringen) in 2014. The Institute takes care that the flow of funds takes
place in a timely manner and in accordance with the rules. Its overall assignment is
to promote the lawful and appropriate implementation of the Wlz by the health care
insurers, care offices and the National Administration Centre. Its tasks further
include the development of policy rules, the provision of information to care
providers and citizens about the insurance package, and to give advice to the
Minister relating to the content of the insurance package.
4 The Social Support Act 2015 (Wmo 2015)
4.1 Development of the Wmo 2015
The Wmo has been in force since 1 January 2007. The act replaced the Act on
Facilities for Handicapped Persons and the Welfare Act, both of 1994.46 At the
same time, certain provisions of the Exceptional Medical Expenses Act (Awbz)
were transposed to the Wmo, notably concerning domestic help.47 As such, the
Wmo became the main legal framework for an integral policy on social support and
welfare. With the adoption of this act, the decentralisation of social support,
initiated in 1994 with the Act on Facilities for Handicapped Persons, was taken a
45
Wlz, Art. 6.1.1.
46
Facilities for Handicapped Persons (Wet voorzieningen gehandicapten) of 1994; Welfare Act
(Welzijnswet) of 1994.
47
Sijtema (2009), pp. 15–16; Klosse and Noordam (2010), pp. 419–420.
328 T. Dijkhoff
step further; responsibility for the implementation of the Wmo was entirely
assigned to the municipalities. The government set out the legal framework,
while the local authorities decided how to implement the act in line with this
general framework. The ideas behind the Wmo were based on the well-known
(but contested) assumptions regarding decentralisation that local authorities are
more familiar with their citizens’ needs than the national government, and have
better insight into ways to enhance civic participation.48 Furthermore, better inte-
gration with social services already organised at the local level, such as social
assistance, was envisaged. Another argument was that the consolidation of different
regulations with separate budgets into one local fund with the municipality as the
only executive and risk-bearing body would stimulate innovation and result in a
more efficient pattern of spending.49
The main objective of the Wmo was to promote participation in society and
autonomy in daily life on the part of all citizens. During the readings of the bill it
was explained that participation stands for autonomous functioning (ability to do
things independently) and active involvement in society to the greatest possible
extent.50 An important principle in this respect is that citizens should be able to live
and function in their own environment for as long as possible. It was furthermore
considered that the extent of autonomy to be reached or maintained had to be seen
in the individual context of the person concerned and highly depended on the
individual needs. Emphasis was put on the responsibility of individual citizens
for their own wellbeing, that of their families and that of their communities, which
implies that self-organisation and voluntary support have primacy over support and
services on the basis of the Wmo. Should problems get too big or complicated to be
solved by the (network of the) person in question, the municipalities were consid-
ered as the obvious institutions to organise support. The act covered the following
fields of performance: Informal care; social care and support, including support for
victims of violence in the home; public mental health care; care and support for
people with addiction problems; social cohesion in communities; youth at risk and
parenting problems; client and user information, advice and support; enhanced
participation of people with disabilities, chronic psychiatric or psychosocial
problems.51
In 2010, some amendments of the Wmo became valid. The changes included the
introduction of a (small) benefit for informal (volunteer) caregivers, an improve-
ment of the position of clients in relation to domestic help, and the introduction of
personal contributions for social support. As a part of the major reforms in the
social domain, in 2015 the Wmo has been replaced by the Wmo 2015. The Wmo
2015 reflects the main objectives of the reforms: decentralisation of care and
support; concentration on own responsibility, capabilities and efforts; exploitation
48
Robinson (2007), Scot (2009).
49
Putters et al. (2010), p. 33.
50
Klosse and Noordam (2010), p. 419.
51
Wmo, Art. 1, lapsed on 1 January 2015; Sijtema (2009), pp. 16–18.
of social networks; participation in society of all citizens; a focus on living in one’s

own environment as long as possible, which, in fact, until the person concerned
qualifies for in-patient care on the basis of the Wlz. The new act substantially differs
from the old one. Most importantly, in the new act the self-responsibility of citizens
is emphasised at many points and it expressly states that it may be expected from
citizens to support each other to the best of their abilities. Another important
difference is the extremely vague formulation of the duties of the municipalities,
which is meant to give the local authorities more freedom in the ways they decide to
provide social care and support and in the kinds of support they want to provide.52 It
may be clear that it is not the objective of the Wmo 2015 to provide long-term care
as such, however, for persons with a limitation or disorder as well as for the elderly,
it constitutes an important part of their total long-term care package.
4.2 Personal Coverage
The Wmo 2015 addresses all Dutch citizens, including aliens who have legal
residence in the Netherlands.53 This involves, for example, citizens from the
Member States of the EU and the European Economic Area, as well as asylum
seekers and other aliens with a residence permit. Under specific circumstances and
only on the basis of a ministerial decree, aliens without a residence permit may also
be granted access to Wmo provisions. This applies, for example, to aliens who have
in a timely manner lodged an objection to the withdrawal of their residence permit.
4.3 Entitlement to Wmo 2015 Care
Entitlement to Wmo services does not depend on specific limitations, diseases or

disorders, or on the living situation of the person in question. People living in their
own homes as well as persons in nursing homes, homes for the elderly, or other
institutions can apply for Wmo support, as far as the service is not available under
other regulations. To claim Wmo provisions, an application has to be filed, usually
at the Wmo window of the municipality. To avoid uncertainty for citizens on
whether a specific provision has to be applied for on the basis of the Wmo 2015,
the Zvw or the Wlz, it has been regulated that the municipalities have to cooperate
with health care insurers and care providers.54
In order to give the municipalities the opportunity to attune their policies to the
local characteristics, the Wmo 2015 does not formulate specific entitlements to care
52
Wmo 2015, Art. 2.1.1 sub 1.
53
Wmo 2015, Artt. 1.2.1 and 1.2.2.
54
Wmo 2015, Art. 2.1.2 sub 4.
330 T. Dijkhoff
or support as does the Wlz and, although to a lesser degree, the previous Wmo did.
It merely establishes an obligation for the local authorities to provide social support
and to arrange for the quality and continuity of the provisions.55 A distinction is
made between general provisions and tailor-made provisions. General provisions
relate to general policy areas, such as public mental health care or the promotion of
social cohesion in communities. Tailor-made individual provisions are addressed at
specific groups of citizens, including persons with a limitation or a chronic psy-
chological or psychosocial problem, and also informal caregivers.
In the previous Wmo, the municipal duty to provide individual social support
was linked to the obligation to compensate the limitations that individuals with
chronic psychological or psychosocial problems encountered in doing things inde-
pendently and in participating in society (Article 4). In particular, this ‘obligation to
compensate’ meant that municipalities had to organise and supply provisions in
such a way that the applicants could independently
– keep a household,
– move in and around their homes,
– move within the local community with a means of transport, and
– meet other people and enter into social associations.
The compensation principle implied that the services provided should outweigh
the limitations as much as possible, with as a result that the person in question was
able to start from a position equivalent to that of a person without limitations. The
Wmo furthermore elaborated on the substance of the formulated four objectives.
For example, regarding the ability to independently keep a household several very
concrete results to be achieved were formulated:
– a clean and liveable house,
– living in a suitable house,
– accessability to products for the first necessities of life,
– accessability to clean and suitable clothing,
– the ability to take care of the children (belonging to the family) at home.
– the ability to carry out the necessary activities of daily living.
How to achieve these results was left to the discretionary power of the munic-
ipalities. However, the extent of municipal discretion has been limited by several
rulings of the Central Appeals Tribunal. For example, the court argued that neither
the law, nor the parliamentary documents gave rise to an unresponsive or restrained
assessment of a particular situation regarding a decision on the basis of Article 4 of
the Wmo.56 In any case, a negative decision must be well motivated and the
grounds of the decision should reflect a careful investigation of all relevant facts
and individual circumstances. As a result of these rulings, the municipalities have
often been urged to be more generous with tailor-made provisions.
55
Wmo 2015, Art. 2.1.1.
56
CRvB 10 December 2008 (LJN: BG6612, 08/3206 WMO).
The new act is far less concrete than the old one. The compensation principle has
been retained, but in a much more permissive way. Instead of prescribing which
results have to be obtained with the compensation measures, it only demands the
local authorities ‘to provide tailor-made provisions in order to compensate the
limitations of clients in their ability to do things independently and in their
participation, providing that they are not able to remove or diminish their limita-
tions – according to the view of the local authorities – under their own power, with
help from their social networks, or through the use of general provisions.’57 This
broad formulation of the compensation principle—without defining concrete objec-
tives or minimum standards—is meant to increase the discretionary power of the
local authorities. It is to be seen to what extent the jurisprudence of the Central
Appeals Tribunal regarding the Wmo will withhold their validity under the
Wmo 2015.
A decision concerning a tailor-made provision on the basis of the Wmo 2015 is
an administrative decision against which a complaint can be lodged with the local
authorities. An appeal against the decision of the local authorities on the complaint
can be lodged with a district court. The court of second (last) instance for social
security matters is the Central Appeals Tribunal.
4.4 Services Provided Under the Wmo 2015
4.4.1 Policy Requirements
The Wmo 2015 obliges the local authorities to make a long-range plan on social
support, in which they describe their policy intentions.58 This plan must address, for
example, social cohesion, accessibility of public spaces, prevention of violence at
home, support of volunteer care givers, realisation of collective services, and tailor-
made provisions in view of the promotion of independent participation in society of
persons who are not able to manage for themselves or with the help of their social
networks. The plan must aim at care and support in such a way that people can
indeed stay at home for as long as possible. Special attention should be given to the
provision of integral support in the various fields of social support, public health,
prevention, youth care, education, public welfare, housing, work and income.
Furthermore, the continuity of the provision of support and the freedom of choice
should be safeguarded, taking into account people’s religion, life principles and
cultural background. The plan should indicate which results the local authorities
want to achieve, within which period, and how they will measure whether the
results have been obtained.
57
Wmo 2015, Art. 2.3.5 sub 3.
58
Wmo 2015, Art. 2.1.2.
332 T. Dijkhoff
A municipal regulation must be adopted that regulates the implementation of the

policy plan. In fact, the Wmo 2015 prescribes in far more detail the content and
requirements the policy plan and the regulation should meet than the previous
Wmo. Under the previous Wmo, the Association of Dutch Municipalities
(Vereniging van Nederlandse Gemeenten) has composed a model regulation on
the Wmo, and an attendant explanation in which decisions of the Central Appeals
Tribunal are taken into account.59 This model regulation has been adapted to the
Wmo 2015. In principal, each municipality can formulate its own rules, but in
practice most local authorities have largely copied the model regulation. This is also
contradictory to the idea of the new act that the municipalities should develop their
own policies tailored to the local characteristics.
4.4.2 Tailor-Made Provisions: A Shift from Individual Entitlements

to Municipal Policy Objectives
Because the Wmo 2015 does not prescribe concrete entitlements, it is not clear yet
how the act will be implemented by the municipalities. Yet, the implementation of
the new act has to connect with and embroider on the practice as developed under
the previous Wmo, at least to a certain extent. Therefore, in this section the different
individual provisions under the old act are briefly described first, followed by a
preliminary outlook on the effect of the Wmo 2015.
4.4.2.1 Provisions to Independently Keep a Household
In order to allow people to live in their own homes in spite of certain limitations,
several provisions were available on the basis of the Wmo. The starting point was
that the applicant should be able to make normal use of the house regarding
standard daily activities such as sleeping, eating, washing, cleaning, cooking, and
taking care of the children.60 In the model Wmo regulation, several results to be
achieved were formulated as listed in Sect. 4.3. Concrete provisions to reach the
desired results included: domestic help; a walking aid, or modifications to the house
such as handrails, ramps, or a stair lift; grocery service, meals on wheels, or
assistance with cooking; assistance with the sorting out, washing, drying, ironing
and stowing away of clothes; guest parenting, child day care, or a school taxi.61 In
each individual case, an assessment took place as to determine to what extent other
members of the household could take over certain activities (usual care), or whether
59
Model Regulation Wmo (Modelverordening Wmo), published on the website of the Association
of Dutch Municipalities (VNG.nl).
60
Van Rooij and Boersma (2011), pp. 38–44; Sijtema (2009), pp. 106–108.
61
Explanation to the Model Regulation Wmo; Van Rooij and Boersma (2011), pp. 51–55; Sijtema
(2009), pp. 69–73.
there were other services available that might lead to the same result. In general,
fixed standards as to the amount of support were set for each kind of provision, for
example, domestic help for a 1-person household with two rooms allowed for
90 min help per week (2012). Domestic help constituted the main part of individual
provisions.
Under the Wmo 2015, the municipal tasks have expanded. The care for persons
who are not in need of care and support around the clock on a permanent basis, but
who do need assistance in order to be able to live in their own homes and participate
in society, is shifted from the Awbz to the municipalities. This means that the
number of persons to be taken care of has increased considerably. Furthermore,
several new services have to be offered that were previously covered by the Awbz,
such as personal care for person with cognitive problems. At the same time, the
budget has been cut down, for example, the budget for domestic help in 2015 has
been cut with 25%. As a response to the budget cuts, municipalities mainly invest in
the provision of collective services such as meals on wheels, shared taxi services,
and collective domestic help services in order to save on tailor made provisions. In
the first quarter of 2015, it has already become clear that municipalities reject
requests for domestic help on a large scale, often without investigating the individ-
ual situation. At the time of writing, many court cases were pending on this matter.
4.4.2.2 Provisions to Move in and Around the Home
Under the old Wmo, the municipality had to compensate for the limitations of
people to move within and around the house in a way that they could function
normally. This implied moving to and through all living quarters, including the
living room, bedrooms, bathroom, and also the garden, and, if actually used, the
storeroom. Compensation was offered in the form of aids and appliances; in most
cases this involved a wheelchair, or, if the house had stairs with a lift, two
wheelchairs, one for downstairs and one for upstairs. The appliances could be
new or used, as long as they fulfilled their purpose. If a wheelchair was necessary
on an occasional basis only, the applicant might be referred to a wheelchair hire. At
this point, it is not to be expected that municipal policies will change much under
the Wmo 2015, apart from economy measures such as the use of second hand wheel
chairs and stricter requirements as to the provision of the aids.
4.4.2.3 Provisions to Move Within the Municipality
The duty to compensate also concerned the means of transport for the purpose of
moving around in the local region, which included neighbouring municipalities.
Transport outside the local region was additionally covered if it was necessary to
maintain essential relationships. Individual provisions for transport were only
awarded if an applicant was unable to make use of public transport, for example
owing to the incapacity to walk the distance to the nearest bus stop. Provisions
334 T. Dijkhoff
included: the use of a collective transport system (shared taxi), financial compen-
sation for the use of a (wheelchair) taxi, car modifications, a scoot mobile, or a
medically necessary accompanying person. In view of cost efficiency, municipal-
ities were usually reluctant to provide for car modifications or financial compensa-
tion for individual means of transportation and rather promoted the use of their
collective transport system.62 Under the Wmo 2015, more stringent policies will be
adopted at this point and municipalities will promote the use of second hand scoot
mobiles through collective pools.
4.4.2.4 Day Care and Day Activities
Under the Awbz, persons with a limitation or a chronic psychological or psycho-

social problem could attend out-patient day care or day activities for a number of
days determined in accordance with the severity of their limitation. Now that the
Awbz has been abolished, this service is transferred to the Wlz as far as it concerns
people who are in need of intensive care on a permanent basis. Persons with less
severe limitations have to turn to their municipalities to get support on the basis of
the Wmo 2015. Since the Wmo does not prescribe the kinds of care and support to
be provided, the municipalities are free whether, to what extent and in which way
they realise this kind of support. For many clients who have attended day care
groups under the Awbz, this will be ended or diminished in the course of 2015.
4.4.2.5 Provisions to Meet Other People and Enter into Social Associations
In the previous Wmo it was expressly stated that all citizens should have the
possibility to maintain relationships with other people and to take part in recrea-
tional, social, or religious activities. This might involve, for example, attending
meetings or services, visiting family, or following courses to make positive use of
free time. Provisions to achieve this objective might include financial compensation
for a medically necessary accompanying person and course fees. It is to be expected
that under the new act municipalities will be more selective in this respect and will
demand much more support of the social networks of the persons concerned.
4.4.3 Indication of the Kind and Amount of Support Regarding Tailor-

Made Provisions
Until 2015, the assessments for the indication of care or support was performed
either by the municipalities themselves, or they farmed out this specific task, for
62
Explanation to the Model regulation Wmo; Van Rooij and Boersma (2011), pp. 104–106;
Sijtema (2009), pp. 44–50.
example, to the Centre for Care Assessment (Centrum indicatiestelling zorg, CIZ)
that also did the Awbz assessments (see Sect. 3.5). Outsourcing of this task was
possible because the Wmo and the relevant case law provided rather clear guide-
lines on which kind of support had to be provided. In most cases, the kind and
amount of care or support to be granted was determined on the basis of a question-
naire or through medical assessment. Only in more complicated situations, the
application was investigated through an individual appointment with the applicant.
This is different under the Wmo 2015. The act prescribes that before the actual
application for a tailor-made provision can be submitted, the municipality has to
investigate the need of support in consultation with the client.63 The investigation
takes into account the personal needs, characteristics and preferences of the clients;
their abilities to cope for themselves; the possible support from their social net-
works; the availability of useful general provision; the possibilities to increase their
ability to do things independently; and which contribution in the costs the client will
be due. A report of the outcome of the investigation has to be supplied to the client
within 6 weeks after the request for an investigation. This report is not subject to a
complaint or appeal procedure. If the municipality decides on the basis of the
investigation that the client qualifies for a tailor-made provision, the formal appli-
cation can be submitted. The decision on the application—which is an administra-
tive decision—indicates the kind and amount of care and support to be provided and
has to be taken within 2 weeks. With the legal obligation for the municipalities to
perform a precisely prescribed investigation prior to the application, the entire
indication procedure has become much more time consuming and labour intensive
than was the case under the old Wmo.
4.4.4 General Provisions
General provisions are, in contract with tailor-made provisions, open to all citizens.
They relate to policy areas such as public mental health care, the promotion of
social cohesion in communities, and involve collective services that might contrib-
ute to the possibility for citizens to independently live in their own homes for a
longer period. Examples are: crisis intervention; prevention of addiction; preven-
tive support to youths at risk; provision of client and user information and advice,
collective meal services, collective shared transport systems, community centres.
These general provisions are not specifically related to long-term care, but may play
a role in individual situations in which long-term care is needed.
63
Wmo 2015, Art. 2.3.2.
336 T. Dijkhoff
4.5 Personal Budget
The previous Wmo obliged local authorities to offer applicants who were entitled to
individual provisions a choice between the indicated provisions in kind or a
personal budget from which they could purchase the indicated support themselves
(Article 6). To facilitate freedom of choice, the municipality had to inform the
applicant about the consequences of the different options in clear and understand-
able wordings. The choice for a personal budget could only be refused if there were
strong reasons for objection, for example, if it was not sure whether the personal
budget would be used for the purchase of the indicated support. This could be the
case for clients with an addiction problem, or with manic psychoses. In relation to
the provisions to move within the municipality, objections could also have a general
character, for example, with the purpose of maintaining a system of collective
transport.
If an applicant opted for a personal budget, a particular amount of money was
deposited on their account. The budget holder could spend the money for the
purpose of the indicated objective or service according to personal preference,
which might also include hiring a relative or friend for the provision of a service.
The budget had to be sufficient to purchase services comparable with the provision
in kind. For example, if a budget holder hired a domestic helper or someone to assist
with the daily activities, the budget must be sufficient to pay at least the minimum
wage if it concerned an employment relationship. The budget holders must organise
and pay the services themselves, give account of their budgets, and sometimes even
obtain employer status, which could bring about serious administrative obligations.
In the Wmo 2015, the possibility to choose for a personal budget has been
retained. However, the act prescribes certain limitations in order to safeguard a
proper use of the budget and to prevent fraude. For example, the municipality must
determine that the client is sufficiently able to fulfil the obligations and responsi-
bilities following from a personal budget, for example, the administration of the
budget and the purchase of safe and adequate services or aids. Furthermore, the
municipalities may prescribe the conditions under which services and aids may be
purchased from persons form the client’s social network, for example, by setting
maximum hourly rates or maximum tariffs. Another difference with the old regu-
lations is that the budgets are no longer deposited on the accounts of the clients
themselves, but, as is the case with the Wlz, to an earmarked account of an
institution that has been assigned to administer the budgets on behalf of the budget
holders. The budget holders have to send the contracts with their care providers to
the administrator for approval in advance and forward the accounts payable in
accordance with the approved contracts. This way, verification takes place ex ante
instead of ex post. Amounts that are not used during the period for which the budget
was given, or that cannot be justified, have to be refunded.
4.6 Informal Care and Volunteer Care
In view of participation in society, informal care and voluntary support have always
played an important role in the Wmo, which has even been strengthened in the
Wmo 2015. Therefore, the support of informal caregivers is one of the policy areas
of the Wmo. As is the case under the Wlz, informal care is to be understood as care
that exceeds the ‘usual care’ that family members have to give to each other. In the
assessment of an application for a tailor-made provision, it is not only the avail-
ability of usual care that is taken into account, but also that of informal or voluntary
care and support. The Wmo defined informal care as ‘long-term care, not given
within a professional framework, to a person in need of care by a person from his or
her direct environment, whereby the provision of care directly follows from a social
relationship and which care goes beyond the usual care among members of the
same household’.64 This definition has by and large been retained in the Wmo 2015,
however, the reference to usual care has been deleted. Thus, informal caregivers
are, in general, non-professionals who have a personal bond with the person who
needs care. A distinction is made between informal caregivers and volunteers.
Although they may do the same work, voluntary care concerns support by a person
who does not have a personal relationship with the person in need of care.
The Dutch Social en Cultureel Planbureau (Netherlands Institute for Social
Research, SCP) has performed an extensive investigation on the number of infor-
mal caregivers in the Netherlands, and the problems they encounter, on the basis of
information gathered in 2008.65 A similar investigation was conducted in 2001. The
Institute uses a broad definition of informal care: care given to a person in need of
care by someone from his/her direct environment. This means that care in this
investigation includes ‘usual care’ provided by family members. The care may vary
from house cleaning to personal care and support. The numbers are based on
questions asked to adults as to whether they gave help to someone with a chronic
disease or handicap, to someone with a temporary disease, to someone who was
nursed at home and later deceased, or to someone who had another care environ-
ment. It appeared that in 2008, 3.5 million citizens of 18 years or older gave
informal care, among which were more than 2.3 million who gave care for more
than 8 h per week and/or during a period longer than 3 months.66 This amounted to
20% of the adult population. There were 1.1 million informal caregivers who
provided both intensive as well as long-term care (Table 2).
It has been calculated that informal care comprised a financial capital of almost
7 billion euros, while the total costs for public youth care, handicapped care, and
care for the elderly amounted to 22 billion euros.67 The Wmo as well as the Wmo
2015 state that municipalities have to develop policies to initiate, facilitate and
64
Wmo, Art. 1(1)(b), lapsed on 1 January 2015.
65
Oudijk et al. (2010).
66
Oudijk et al. (2010), p. 3.
67
De Boer and de Klerk (2013), p. 19; De Boer et al. (2013), pp. 151–154.
338 T. Dijkhoff
Table 2 Number of informal caregivers of 18 years and older in the Netherlands: duration and
intensity in 2001 and 2008 (absolute numbers 1000)a
2001 2008
Total 3.700 3.500
More than 8 h per week 1.050 1.400
More than 3 months 2.050 2.300
More than 8 h per week and/or more than 3 months 2.400 2.600
More than 8 h per week and more than 3 months 750 1.100
a
Oudijk et al. (2010), p. 3
support initiatives relating to informal care, for example, particular volunteer

groups. In most municipalities, a ‘support point’ for informal care or volunteer
work is established to coordinate informal care and supply the necessary informa-
tion. More specifically, local authorities have to offer support in case informal
caregivers are temporarily unable to perform their tasks. Under the old Wmo, this
obligation was often realised through the provision of ‘respite care’, for example,
by organising temporary care to relieve caregivers when they are overworked and
need a period of rest.
In 2010, a cash benefit for informal caregivers was included in the Wmo, to
compensate the costs that follow from the volunteer work. To qualify for this
benefit, the person who received the informal care must have an indication decision
for out-patient care for the duration of at least 371 days. Furthermore, the person
who received the care had to indicate the informal caregiver as the beneficiary and
co-sign the application form. The benefit amounted to € 200.00 per year in 2013. In
the Wmo 2015, this allowance has been annulled, since it is entirely left to the
discretion of the municipalities how to support informal and volunteer caregivers.
The Wmo is mainly financed through national taxes. The budget that is allotted by
the central government to the municipalities for the implementation of the Wmo is
deposited in the general ‘fund for municipalities’. The provisional budget for 2015
amounts to 8 billion euros,68 while the budget for 2103 amounted to 1.5 billion
euros.69 An extra budget of 10.4 billion Euros has been allocated to the municipal-
ities for the transition costs regarding the different decentralisation operations. The
distribution of the fund among the municipalities takes place according to a special
formula on the basis of a number of local characteristics, such as family composi-
tion, age of the population, level of income, need of job-related care, health
situation, and geographical factors. The municipalities can use this budget at their
68
State Secretary of Health, Welfare and Sport (2015), p. 2.
69
TK 2012–2013, 33400 XVI, No. 1, National Budget 2013, p. 10.
own discretion—not necessarily for social support—within the boundaries of

the law.
The municipalities are allowed to ask contributions for individual provisions
from persons aged 18 years and older, both in the case of a service in kind or the
provision of a personal budget.70 The Minister sets, by decree, maximum amounts.
These maximum rates vary depending on the age and income of the applicant and
his/her partner. The local authorities are free to determine the level of the contri-
butions as long as the maximum amounts are taken into account, and the personal
contribution may not be higher than the actual cost of the provision. Furthermore,
the levying of a personal contribution for wheelchairs is not allowed. The Minister
has appointed the Central Administration Office to determine and collect the
personal contributions, since this Office is also responsible for the personal contri-
bution on the basis of the Wlz.
5 The Health Insurance Act (Zvw)

5.1 Development of the Zvw
At the end of the eighteenth century, the first sickness funds were introduced,
mainly focusing on low-income households who could not afford medical treat-
ment. By the beginning of the twentieth century, more than 500 sickness funds
existed, most of them set up and run by employers’ or workers’ associations. As a
consequence of the lack of legal regulations, coverage was low and many chroni-
cally ill, disabled, and old persons remained uninsured, in spite of efforts of the
government to improve the situation. It was under the German occupation, in 1941,
that health insurance was made mandatory for all employees with wages below a
fixed level through the adoption of the Sickness Fund Decree (Ziekenfondsbesluit),
following the example of the German Krankenkasse.71 For high-income workers,
insurance for medical expenses remained voluntary. After the war, the government
retained the system and expanded the care packages as well as the personal
coverage. In 1966, the Decree was replaced by the Sickness Fund Act
(Ziekenfondswet), but this did not change the system. In the course of time, small
sickness funds merged with larger insurance companies, which reduced the number
of funds to some dozens by the end of the century.
The dualistic system of mandatory insurance for employees with an income
below a fixed amount on the one hand and voluntary private insurance for those
with earnings above the threshold on the other, brought about the circumstance that
more than one third of the Dutch population remained uninsured. Although every-
one was insured against the risk of exceptional medical expenses in the case of
70
Decree on the Social Support Act 2015, Art. 3.8.
71
Noordam and Vonk (2010), p. 138; Pennings (2009), p. 57.
340 T. Dijkhoff
invalidity or chronic diseases after the adoption of the Awbz in 1968, this was not
true for the risk of ordinary medical care, including medical devices and the first
year of hospitalisation. Therefore, and in order to deal with the increasing health
care expenses, from 1970 onwards, several ideas for a basic health care insurance
for all citizens were developed by subsequent governments, which finally led to the
reform of the Dutch health care system that began with the adoption of the Health
Insurance Act (Zvw) of 2005. With the abolition of the Awbz in 2015, a number of
provisions involving long-term care have been transferred from the Awbz to the
Zvw, notably nursing and personal care at home, and care for persons with sensory
disabilities. Apart from these additions to the insurance package, the fundamental
2015 reforms only marginally affected the Zvw.
5.2 Entitlement to Care
The Zvw provides for mandatory insurance for all persons who are ex lege insured
under the Longterm Care Act (Wlz), which means all residents and persons subject
to Dutch income tax.72 This implies that the spouse of an insured person is no
longer ‘co-insured’ with his or her breadwinner, as was the case under the Sickness
Fund Act, but that everyone is individually insured (as of 18 years of age). Children
up to the age of 18 years are co-insured. Any insured person is entitled to health
care, consisting of73:
– medical care, including primary health care as provided by general practitioners
and obstetricians
– dental care (until the age of 18 years)
– pharmaceutical care
– medical aids
– nursing and personal care (both in- and out-patient)
– treatment, including maternity care
– residence in relation to medical treatment
– transportation.
The government sets out the detailed content of this health care package through
the Health Insurance Decree, which is regularly updated.74 In addition to the
mandatory insurance, a supplemental insurance can be obtained on a voluntary
basis.
72
Zvw Art. 2.
73
Zvw Art. 10.
74
Health Insurance Decree (Besluit Zorgverzekering) of 28 June 2005.
5.3 Services Relating to Long-Term Care
As mentioned above, the Zvw mainly covers medical care that aims at the recovery
or improvement of the patient’s health. Nevertheless, the act covers several kinds of
care that involve long-term care, especially after the 2015 reforms. The provisions
relating to long-term care are the following75:
– Medical devices, such as diabetes-related devices, electrostimulators for chronic
pain, communication devices, guide dogs, hearing aids;
– Out-patient mental health care, and the first 3 years of accommodation in a
mental health care institution;
– Out-patient care for persons with a visual, auditory or communicative limitation
aimed at managing, removing or compensating the limitation (since 2015);
– Paramedical care, such as physiotherapy and dietary care in relation to
predefined chronic diseases or disorders;
– Geriatric care (under specific circumstances) (since 2015);
– Pharmaceutical care;
– First 3 years of hospital care (this was 1 year until 2015);
– Care provided by medical specialists without admission to a hospital;
– Out-patient nursing, including personal care such as giving medicines, wound
dressing, helping with getting washed and dressed, etc. (since 2015);
– Necessary transport (public transport, taxi, car, or ambulance), e.g. if an insured
person is reliant on the use of a wheelchair, or if a person needs transport for the
treatment of a long-term illness or disorder.
The Zvw is funded by the insured persons, employers and benefit agencies, as well
as the state. Firstly, as of 18 years of age citizens pay a nominal premium to the
insurer of their choice for statutory basic health insurance and voluntary supple-
mentary insurance.76 This premium is fixed by each insurance company and differs
depending on the extra services they may offer on top of the basic statutory
package. Insurers also increasingly differentiate in the extent of freedom for the
patient to choose the care providers of their preference. In 2015, the nominal
premiums varied from € 990 to € 1393 per year. Insured persons for whom the
premium constitutes a disproportionate burden can apply for an income-related
allowance (zorgtoeslag) that is financed from general taxes.77 In 2014, the income
75
Health Insurance Decree, Art. 2.4–2.15. It should be noted that these elements of health care are
not specifically parts of the long-term care system as such; they are however relevant for people in
need of long-term care.
76
Zvw, Art. 16–18.
77
Health Care Allowance Act (Wet of the zorgtoeslag) of 16 June 2005.
342 T. Dijkhoff
limit to qualify for an allowance was € 28,500 for single households and € 37,000
for partners.78 The lower the income, the higher the allowance, with a maximum
allowance (for minimum-wage households or below) of € 864.
Next to the nominal premium, an income-related contribution has to be paid.79
This amounts to a fixed percentage of the so-called ‘contribution income’, which is
subject to an upper limit. In 2014, the percentage for employees and recipients of a
social security benefit amounted to 7.5%, and to 5.4% for the self-employed (and
some other categories). The upper limit for the contribution income amounted to €
51,413. Insured persons who are subject to tax on wages (notably employees and
certain benefit recipients), receive a compensation for the contribution from their
employers or benefit agencies, which is added to their brute, taxable income. Other
insured persons have to pay the income-related contribution themselves. The
contributions are collected by the Tax Office and allocated to the Health
Insurance Fund.
Since 2009, citizens who use health care services have to pay a fixed excess set
by law.80 An annual indexation of the amount of the excess is effected in accor-
dance with the increase of total health care expenses on the basis of the statutory
basic insurance. In 2009, this excess amounted to € 150, and to € 220 in 2012.
According to the indexation formula, the excess would be € 235 in 2013. However,
a supplemental increase of €115 has been set as part of a large package of economy
measures, which has brought the excess to € 350 in 2013. The extra € 115 were
compensated entirely through the health care allowance for insured persons with a
statutory minimum income, and partly for those with a yearly household income of
up to around € 31.000. In 2014, the excess was 360. Some services do not come
under the fixed excess, such as those offered by general practitioners and those
related to obstetric care. Insurers are free to additionally offer policies with a higher,
voluntary, excess against lower premiums.
Many kinds of care and services also have to be paid for—in whole or in part—
by the insured persons themselves, either because these services are not covered by
the insurance package, or because a personal contribution has to be paid to the
insurer. On the basis of the statutory insurance package, this involves, for example:
the first 20 visits to the physiotherapist; dietary advice (in most cases); specific
medicines; aids; personal contribution for transport. Furthermore, for several ser-
vices and therapies a maximum annual compensation is set in terms of a maximum
amount or a maximum number of treatments. Supplementary health insurance
policies may compensate a broader scope of care and higher amounts.
The state contributes to the health care system in three ways: First, through the
health care allowances as a compensation for nominal premiums and fixed excess
for lower-income households; second, by paying a contribution for children to the
78
As of 2013, the allowance is not only depends on income, but also on assets.
79
Zvw, Art. 41–57; detailed information available on the website of the Dutch Government
(rijksoverheid.nl, mainly in Dutch).
80
Zvw, Art. 19–22.
Health Insurance Fund, amounting to half of the nominal premium that adults pay
for themselves; and third, through financing training courses of medical specialists
(via the training fund), and subsidizing scientific research within hospitals.
Citizens can freely choose which insurance company they want to affiliate with,
and the insurance companies are obliged to accept anyone who applies, irrespective
of the applicant’s health or age—in order to prevent risk selection. Health care
insurers purchase services from care providers, the latter of which are free to
conclude or refuse contracts with any insurer whatsoever and are also free to
purchase services themselves from other care providers. Insurers are not obliged
to contract all care providers81; they are free to select those providers with whom
they can make the best deal, either in terms of quality or costs. An evaluation of the
system has indicated that there is a real possibility that insurers will increasingly
apply risk selection methods or will not sufficiently take into account high-risk
policy holders while purchasing care, especially since they do not have to make
explicit the criteria on the basis of which they give preference to one provider over
another in their purchasing of care for specific diseases or disorders.82
6 Care Providers: Eligibility and Quality Standards
6.1 Eligibility
Care institutions that want to qualify for reimbursement on the basis of the Health
Insurance Act (Zvw) or Longterm Care Act (Wlz) have to be admitted by the
Minister of Health, Welfare and Sports in accordance with the Health Care Insti-
tutions Admission Act (Wet toelating zorginstellingen) and underlying regula-
tions.83 The requirements for admission must safeguard efficient, stable, and
accessible health care of good quality.84 The rules include detailed criteria regard-
ing the dispersal and accessibility of the different kinds of care and the construc-
tional, organisational and functional position of the institutions. Care providers that
exclusively provide care paid through personal budgets do not need an admission;
neither do institutions that provide care outside the Netherlands. In relation to long-
term care, institutions that provide the following kinds of care or services may be
admitted:85
81
In contrast with the previous system of the Sickness Fund Act under which the insurers were
required to contract all qualified out-patient Health Care providers, see: Westert et al.
(2010), p. 208.
82
SER (2012), pp. 9–10; Commissie Evaluatie Risicoverevening Zvw (2012).
83
Health Care Institutions Admission Act (Wet toelating zorginstellingen) of 20 October 2005.
84
Health Care Institutions Admission Act, Art. 3.
85
Health Care Institutions Admission Decree (Besluit toelating zorginstellingen), Art. 1.2.
344 T. Dijkhoff
– Care for thrombotic patients

– Paramedical care
– Provision of appliances
– Transport for patients
– Behavioural therapy in relation to psychiatric disorders
– Personal care and support
– Nursing
– Assistance
– ADL assistance
– Lending of nursing supplies.
An admitted institution that intends to provide another kind of care than the care
on which the admission is based, or wants to extend the number of places, or change
its name or address, has to submit a new application for admission. Since 2012, self-
employed persons are allowed to provide homecare services and services paid
through a personal budget; they are excluded from the scope of the Health Care
Institutions Admission Act. Also institutions that provide care and support only on
the basis of the Wmo do not need admission.
6.2 Quality Standards
All institutions and self-employed professionals have to comply with the quality
standards set down in the Care Institutions Quality Act and the Individual Health
Care Professions Act respectively.86 These quality standards are elaborated in detail
by the various care sectors in cooperation with the Health Care Inspectorate
(Inspectie voor de Gezondheidszorg), insurers, and patients’/clients’ associations.
The standards have to be followed not only by institutions that are admitted by the
Minister, but also by institutions that provide care outside the reach of the Zvw and
Wlz, for example, providers of uninsured care such as cosmetic surgery and self-
employed persons who provide homecare. Systemic internal monitoring, control-
ling, and improving of the standards are part of the requirements. Apart from the
sector-specific quality standards, each care provider must meet further criteria on
the basis of the Care Institutions Quality Act, relating to administrative and
organisational matters. For example, a care plan has to be made and discussed
with each patient, including specific goals, details on privacy and hygiene, assis-
tance from family members, etcetera. Furthermore, the institutions have to regulate
client participation,87 and maintain an accessible complaint procedure with a
86
Care Institutions Quality Act (Kwaliteitswet Zorginstellingen) of 18 January 1996; Individual
Health Care Professions Act (Wet op de beroepen in de individuele gezondheidszorg) of
11 November 1993.
87
Regulated in the Co-determination Rights of Clients of Care Institutions Act (Wet
Medezeggenschap Cliënten Zorginstellingen), applicable to all care institutions that are financed
complaint committee. Each care provider has to report annually on their quality
policy.
A large number of public and private organisations are involved in developing,
improving, and implementing quality standards for care services and specialised
medical performances.88 As mentioned above, self-regulation takes place through
medical associations, professional societies and other umbrella organisations,
within the legislative framework. Also client and consumer organisations play a
role in the setting and monitoring of quality standards. The introduction of compe-
tition in care with freer choice for consumers and insurers has increased the need for
transparency regarding the quality of services, which also requires all stakeholders
to be involved in the development of performance indicators.
Since the government bears general responsibility for the quality of care, several
public institutions have been assigned to contribute to the development and imple-
mentation of quality standards. The Health Care Inspectorate, for example, pub-
lishes reviews to describe quality problems in particular care sectors, and supports
care providers and insurers to develop quality standards and indicators. The Dutch
Health Care Institute (Zorginstituut Nederland) runs the Quality Institute
(Kwaliteitsinstituut) that has at its objective to improve the care provided and to
inform the insured persons about the quality of the different care providers and
treatments.89 It develops, for example, quality measuring instruments and informa-
tion databases for patients. The Dutch Health Care Institute also advises the Minster
on improvements and innovations as to the professions and schoolings in the field of
health care. Next to the Dutch Health Care Institute, the National Institute for Public
Health and the Environment (RIVM) is an important centre of expertise in the field
of health care, among other fields. It is assigned to assess the performance of the
Dutch care system by monitoring trends in the quality, accessibility and costs of
care. It also compares the performance internationally. Furthermore, the Dutch
Health Care Authority (Nederlandse Zorgautoriteit) seeks to promote quality by
setting market conditions that encourage quality and innovation in health care.
Apart from these public institutions, the government technically and financially
supports researchers and professional associations. An important independent sci-
entific body is the Health Council of the Netherlands (Gezondheidsraad), whose
task is to provide the government and parliament with advice in the field of public
health and health care research. Furthermore, the Council for Public Health and
Health Care (Raad voor de Volksgezondheid en Zorg), is also an independent body
that advises the government on public health and care.
on the basis of the Wlz, Zvw, Wmo, or funded by the Ministry of Health, Welfare and Sport,
municipalities or provinces on the basis of other regulations or subsidies.
88
For an overview of quality control, see: Legido-Quigley (2008), pp. 150–156.
89
Until 1 April 2014, the Dutch Health Care Institute was named Health Insurance board (College
voor Zorgverzekeringen).
346 T. Dijkhoff
7 Supervision
7.1 Many Different Actors and Regulations
Supervision of care provided under the Wlz, the Zvw and the Wmo takes place at
different levels and involves many different actors and regulations.90 By law, all
care institutions are required to establish a supervisory board to control and secure
the quality and safety of the care provided.91 To support quality control, several
associations of medical professionals or institutions within specific branches of
(health)care (hospitals, homes for the elderly, etc.) have developed their own
quality standards and governance codes or codes of conduct. Public supervision is
established to safeguard the effectiveness of private supervision.92
All medical professionals, hospitals and Wlz institutions, as well as health care
insurers, are also subject to state supervision. Several supervisory bodies have been
established on the basis of a multitude of regulations. For care institutions and care
professionals the Health Care Inspectorate (Inspectie voor de Gezondheidszorg) is
the most important supervisory body. The Dutch Health Care Authority
(Nederlandse Zorgautoriteit) is the supervisory body for the health care markets;
it supervises the behaviour of both care providers and insurers that are active within
the fields of the Zvw and the Awbz. It has to operate in close coordination with the
Dutch Competition Authority (Nederlandse Mededingingsautoriteit) which acts as
the watchdog for the markets in general. Furthermore, the Dutch Health Care
Institute (Zorginstituut Nederland), the Dutch Bank (De Nederlandsche Bank)
and the Financial Market Authority (Autoriteit Financiële Markten) also play a
part in the supervision and enforcement of the different elements of the care
system.93 A brief description of the Health Care Inspectorate and the Dutch Health
Care Authority as the main public supervisory bodies will be given below.94
Another link in the supervisory system involves client participation. On the basis
of the Co-determination Rights of Clients of Care Institutions Act,95 institutions are
required to establish a client council to be composed by the clients of the institution
or their family members. This council has to represent all groups of clients or
patients within the institution. The management of the care institution has to
provide all information necessary for the client council to perform its task. The
council has the right to discuss policies with the management and to conclude
90
See, for example: Van Beek and Hübner (2008), Otto et al. (2011), Inspectie voor de
Gezondheidszorg (2011), Sauter (2009).
91
Health Care Institutions Admission Act, Art. 36.
92
For more information on private and public supervision, also differentiated as internal and
external supervision, see, for example, Van Beek and Hübner (2008), pp. 16–18.
93
See, for example, Sauter (2009), pp. 11–13.
94
Sections 7.2 and 7.3.
95
Co-determination Rights of Clients of Care Institutions Act (Wet Medezeggenschap Cliënten
Zorginstellingen) of 29 February 1996.
agreements on the implementation of the policies. It can also nominate one member
of the Supervisory Board of the institute. Furthermore, it can give advice on request
or uninvited.
It may be clear that supervision in the care sector comprises a complex system of
diverging as well as overlapping regulations and institutions. The introduction of
competition in health care was reason for several new regulations in the field of
supervision and quality control, with new institutions to implement these rules.
These new regulations and amendments of laws have changed the definitions,
implementation and systematics of laws over the course of time. Altogether, this
has led to several inconsistencies in the use of legal definitions, such as ‘supervi-
sion’, ‘enforcement’ and ‘institution’ and to a lack of transparency. It is being
questioned whether the coherence of the different acts and the accompanying set of
instruments are still adequately safeguarding responsible care of good quality.96
Suggestions for a simplification of the supervisory system have been put forward
from different advisory boards.97
7.2 The Health Care Inspectorate
The Health Care Inspectorate is assigned to supervise the quality, safety, and
accessibility of health care and to safeguard the rights of patients or clients. The
legal basis for the Inspectorate is the Health Act (Gezondheidswet), which formu-
lates the tasks of the Inspectorate.98 The main tasks are the investigation and
promotion of public health, supervision of compliance with laws and regulations
by care providers and identification of breaches of the rules, and the offering of
advice and information to the Minister.99 The Inspectorate enforces about 25 dif-
ferent laws within a sector of more than 800,000 professionals and 3000 institutions
at 60,000 addresses.100 Important laws regarding the supervision of governance and
internal supervision of care institutions include the Health Care Institutions Admis-
sion Act (Wet toelating zorginstellingen) and the Care Institutions Quality Act (Wet
op de beroepen in de individuele gezondheidszorg). Supervision of medical prac-
titioners is mainly based on the Individual Health Care Professions Act (Wet op de
beroepen in de individuele gezondheidszorg).101 Some laws contain explicit and
detailed rules, while other rules are more general and contain open norms, for
example the provision that care must be effective, suitable, and patient-oriented; in
96
Robben et al. (2012), p. 19.
97
For example: SER (2012), p. 11.
98
Health Act (Gezondheidswet), Art. 36.
99
Ngo et al. (2008), pp. 9–18. For a critical appraisal of the Inspectorate, see: Ketelaars (2011).
100
Inspectie voor de Gezondheidszorg (2008), p. 6.
101
Individual Health Care Professions Act (Wet op de beroepen in de individuele gezondheidszorg)
of 11 November 1993.
348 T. Dijkhoff
such cases supervision is based on norms that are established by the care providers
themselves through the branch associations in cooperation with the Inspectorate.
The Care Institutions Quality Act is an example of an open norm.
The Inspectorate has several instruments at its disposal to perform its tasks and
enforce compliance of the rules on the part of the care providers. Measures include
advice, encouragement, correction and coercion.102 In severe cases, disciplinary
and criminal proceedings can be initiated. Each case is individually examined in
order to take the appropriate enforcement measure. The Inspectorate advises care
providers and medical technology manufacturers, using various channels including
circulars, articles in professional journals, and targeted information campaigns.
‘Enhanced supervision’ is a more stringent corrective measure. The Inspectorate
imposes corrective measures if there is a higher-than-average risk of failure to
provide reliable care. Depending on the exact circumstances, an improvement plan
may be required, or ‘enhanced supervision’ may immediately be imposed. In the
case of serious misconduct, the Inspectorate can bring any individual medical
practitioners before the appropriate disciplinary council.103 Where a medical prac-
titioner’s misconduct is such that the patient or client has suffered serious conse-
quences, the Inspectorate may institute a formal investigation and report the matter
to the public prosecution service, which then decides whether the matter is to be
taken to court.
7.3 The Dutch Health Care Authority
The primary assignment of the Dutch Health Care Authority is the supervision of
the functioning and development of the health care markets and it represents the
interests of the health care consumers. It aims at guaranteeing efficiency, market
transparency, freedom of choice, access to health care and quality care. The central
role of the Health Care Authority is anchored in the Market Regulation Health Care
Act.104 Its field of work comprises the ‘care triangle’ of consumers, providers and
insurers, which together constitute three health care markets: the insurance market,
the care provision market, and the health care purchasing market.105
Apart from supervision and development of the different markets, the tasks of
the Health Care Authority include: regulation of price and performance; supervi-
sion of the lawful implementation of the Zvw on the part of the insurers, in
particular of compliance with the duty to accept clients and the prohibition of
102
See the website of the Health Care Inspectorate (IGZ.nl, ‘enforcement measures’).
103
That is to say, only care professionals who are registered on the basis of the Individual Health
Care Professions Act, which is obligatory for doctors, dentists, pharmacists, health care psychol-
ogists, psychotherapists, physiotherapists, obstetricians, and nurses.
104
Market Regulation Health Care Act (Wet marktordening gezondheidszorg) of 7 July 2006.
105
See Sect. 2.1. Sauter (2009), pp. 14–19.
premium differentiation; supervision of the lawful and efficient implementation of

the Wlz; and provision of advice to the Minister regarding developments in the
health care markets and appropriate policies.106 A functional assessment of the
different tasks of the Health Care Authority leads to a division into five categories,
namely regulation, supervision, enforcement, implementation/execution, and
advice.107 Not only has the Health Care Authority a range of legal instruments
available for establishing general conditions for health care markets, it can also take
action in individual cases, for example, if a provider has a position of significant
power on the market, or if the competitive conditions are distorted.
8 Concluding Remarks
A study in 2011 showed that, in comparison with other European countries, the
Netherlands had a comprehensive and patient friendly care system that provided
integrated and rather generous long-term care of good quality.108 The freedom of
choice for the client or patient was high. Persons in need of care could choose to
organise it themselves through a personal budget or to apply for care in kind. If they
opted for the latter, they could usually choose to receive the necessary care and
services at home or to move into a care institution of their own choice. The system
offered a high degree of legal certainty: entitlements were clearly prescribed by law
and enforceable through accessible complaint and appeal procedures. The Awbz
highly reflected the principle of solidarity; every insured person contributed
according to their ability through premiums and personal contributions that were
both income-related, and the same care package was available and accessible for
everyone irrespective of their income or assets.
However, the relative generosity of the system had its price. By 2010, the growth
of Awbz expenses had been three times as high as the growth of the gross national
product. During the first decade of this century, the costs increased by almost 75%,
due to various reasons, such as more generous indication policies, new therapies
and treatment methods, the empowerment of citizens, the increase of personal
budgets, and an ageing population.109 The expansion of the system and the many
changes implemented in the course of time have also resulted in a very complex
system with an excessive number of involved public, semi-public, and private
institutions, councils, and boards with often overlapping tasks. Furthermore, the
demarcations between the Awbz, Zvw, and the Wmo have proved to be difficult
to set.
106
Sauter (2009), pp. 14–15.
107
Sauter (2009), p. 16.
108
Kraus et al. (2011).
109
Peters (2010).
350 T. Dijkhoff
Several governments have tried to stop the rising costs and to improve the
efficiency of the care system through economy measures, limiting entitlements,
and transferring provisions from the Awbz to the Wmo or Zvw. However, until the
economic crisis it was politically difficult to realise substantial budget cuts. The
economic crisis has altered the political climate in this respect. With the EU
Stability Pact used as the big stick (and as a scapegoat), the current government
was committed to a drastic state budget cut which, for a large part, has been taken
from social security. This implied severe economy measures within the care sector,
resulting in a limitation of care entitlements, higher personal contributions, and the
transfer of large parts of long-term care to the health care insurers and the munic-
ipalities, realised as of 2015. It is obvious that this will cause higher health
insurance premiums over time, and that several kinds of care will only be covered
by complementary insurance packages—resulting in bigger differences in care
between lower- and higher-income households.
Furthermore, the increasing responsibility of the municipalities for the long-term
care of their inhabitants has many traps. For example, the local freedom of policy
will give rise to (great) differences in care provision between municipalities and to
uncertainty regarding the care entitlements of individual citizens, underrepresented
groups of vulnerable persons are in danger of being overlooked, and social care and
support will become even more subject to political trends and preferences than
before. It is not without reason that the Council for the Judiciary has voiced its
concern about a probable sharp increase in court cases, which in turn will put courts
under pressure in terms of time and money.110 Already in the first months of 2015,
many cases had been brought before court. It is also foreseeable that the judgements
relating to individual cases will result in new demarcations of the kind and amount
of care citizens may expect from their municipalities—this has also happened in
relation to the municipalities’ previous ‘duty to compensate’. As a result, the case
law will, over time, limit the discretionary power of the municipalities again, with
attendant financial consequences and an undermining of the arguments for the
localisation of care. The various issues that the reforms may, at this point, bring
about have not been properly addressed. The future will tell whether the chosen
direction towards decentralisation, self-responsibility and less solidarity will indeed
lead to a sustainable and yet durably accessible and client friendly long-term system
care of good quality.
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2015 (Explanation financial aspects Wmo 2015)
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TK, ‘Memorie van Toelichting bij de Wet Langdurige Zorg’, 2013–2014, 33891, nr. 3
TK, ‘Nadere uitwerking brief Hervorming Langdurige Zorg’, 2013–2014, 30597, nr. 380
Van Beek J, Hübner M (2008) Toezicht in de zorgsector; Een balancerend evenwicht. UJG
Van der Most JM (2009) De zorgelijke staat van de AWBZ. Tijdschrift voor Gezondheidsrecht
4:238–265
Van Rooij H, Boersma E (2011) De Kleine Gids Wmo. Kluwer, Deventer
Werkgroep Langdurige Zorg (2010) Langdurige zorg. Rapport brede heroverwegingen,
April 2010
Westert GP et al (eds) (2010) Dutch Health Care Performance report 2010. RIVM, Bilthoven
in Norway
Sebastian Weber
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354
1.1 Municipal Health and Long-Term Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354
1.2 Monetary Benefits from Social Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 356
2 Individual Services and Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 356
2.1 Benefits and Services in Municipal Health and Long-Term Care . . . . . . . . . . . . . . . . . . . 356
2.1.1 Service Targets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357
2.1.2 Authorised Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 357
2.1.3 Common Types of Assistance Offered . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 358
2.2 Municipal Care Wage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359
2.3 Benefits from Social Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359
2.3.1 Grunnstønad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360
2.3.2 Hjelpestønad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361
2.3.3 Forhøyet Hjelpestønad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361
2.3.4 Omsorgs- and Pleiepenger . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 362
2.4 Basic Principles Concerning Service Provision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 363
3 Conditions Relating to Health Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 364
3.1 Procedures of Application and Approval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 364
3.2 Professional and Non-professional Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365
3.2.1 Family Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 366
3.2.2 Benefits for Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 366
3.2.3 Non-profit and Private Long-Term Care Providers . . . . . . . . . . . . . . . . . . . . . . . . . . 368
3.3 The Personal Budget as a Special Form of Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . 370
3.4 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 371
3.4.1 Municipal Tax Revenues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 372
3.4.2 State Subsidies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 372
3.4.3 Co-payments by Beneficiaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 373
3.4.4 Expenses of the Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 374
3.5 Quality Assurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375
3.5.1 Quality Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375
3.5.2 Documentation Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 376
3.5.3 National Supervision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 377
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 378
S. Weber (*)
Bender & Philipp Rechtsanwälte, Munich, Germany
e-mail: sebastian.weber@bender-rechtsanwaelte.de

https://doi.org/10.1007/978-3-319-70081-6_9
354 S. Weber
1 Overview
In Norway, persons who require assistance with the activities of daily living receive
comprehensive support from the communal health and care services, as well as
monetary benefits from social insurance. The legislative bases regarding services
provided by the communities were revised as of 1 January 2012 and laid down in
the Act on Municipal Health Services (The Health Care Act) (HOL).1 The new set
of regulations replaces the Social Services Act (STL) and the Municipal Health
Services Act (HKL).2 The objective of this was to also legally merge these services
of assistance and in-home care, since they are already frequently provided through
one source. Benefits from social insurance (Folketrygden) are provided in accor-
dance with the Norwegian National Insurance Act (Folketrygdloven—FTL).3 In
this context, Norway generally focuses on local solutions to be designed individu-
ally by the communities. The purpose is particularly to provide ambulatory services
and various forms of integrated care and assisted living in order to postpone
admission to an inpatient facility or extended stays therein for as long as possible.4
1.1 Municipal Health and Long-Term Care Services
The term “long-term care dependency” is not defined in Norwegian law. According
to § 3-1, Paras. 1 and 2 (HOL) it is the responsibility of the communities to provide
the “necessary health and long-term care services” to all “patient and user groups”,
which includes persons with somatic or psychological illnesses, impairments or
problems, with addictions, social problems or with limited functional abilities. The
competence of the local communities in this regard extends to school health
services (§ 3-2 No. 1 lit. a), health care centres (lit. b.), medical services and
emergency care (Nos. 2 to 4), social, psychosocial and medical rehabilitation
measures (No. 5), as well as to so-called ‘other health and care services’ (No. 6).
These ‘other services’ also include services to help persons in need of assistance
with their daily activities. For this purpose § 3-2 No. 6 lit. a and b provide for
particular ambulatory services and personal assistance for persons residing in the
respective community. Personal assistance in this context includes practical help,
counselling and so-called support contacts. § 3-2 lit. d HOL also provides for relief
1
Lov om kommunale helse- og omsorgstjenester (LOV-2011-06-24-30), as amended by
LOV-2016-06-17-49, in force 1 January 2017.
2
Lov om sosiale tjenester (LOV-1991-12-13-81) as well as Lov om helsetjenesten in kommunene
(LOV-1982-11-19-66).
3
Lov om folketrygd (Folketrygdloven—LOV-1997-02-28-19) as amended by LOV-2010-12-17-
81 of 1 July 2012.
4
Cf. Melding til Stortinget No. 25 (2005–2006), Mestring, muligheter og mening—Framtidas
omsorgsutfordringer, p. 9.
Long-Term Care Benefits and Services in Norway 355
services to persons who have predominantly taken over the care of a family
member.5 In accordance with § 3-6 HOL, these persons may also be reimbursed
by the local authorities by way of a so-called care allowance.
§ 4-3 of the former Social Services Act (STL) had contained a basis for a claim
which, with regard to the understanding of the new law, may be taken at least as an
approach to define long-term care dependency. Accordingly, it covers persons who
are not able to look after themselves, or who are fully or partially dependent on
practical or personal assistance with their activities of daily living; it is, as yet, not
based on any further specific conditions such as age or disability.6 Persons in need
have a right to assistance to the extent necessary in accordance with the general
standards and with the specific assessment of individual needs through social care
personnel.7 However, the communities are free in the actual configuration of services
they intend to offer, as long as the necessary minimum scope of services is provided.8
However, the communities are not explicitly obliged to finance particular mea-
sures to reconstruct or modify the homes of persons in need in order for the latter to
be able to lead an independent and self-determined life in their own environment.
According to § 3-7 HOL the communities are merely obliged to cooperate in the
construction of the relevant buildings or housing.9
The local communities finance municipal long-term care and support services
mainly from tax revenue, as laid down in § 11-1 HOL. Pursuant to national regula-
tions a compensation between communities is made in cases where persons in need
resort to services from more than one community. According to § 11-5 HOL the
communities also receive an annual subvention from the State, as well as support
from social insurance. Furthermore, the law provides for the possibility to pass on
part of the costs to the persons in need in the form of co-payments, particularly in
cases where private service providers are resorted to (cf. § 11-2 HOL).10
In 2010, a total of 174,570 persons resorted to outpatient assistance and care
services. In absolute terms, this corresponds to 35.5 persons per 1000 inhabitants.
Of these, 62,636 persons were dependent both on practical assistance in their daily
lives and on (long-term) care services in the strict sense (1.27%); 44,558 persons
exclusively required help with activities of daily living (0.91%), while 67,376
persons needed (long-term) care services only (1.37%). In 2010, 42,792 persons
lived in residential institutions for the elderly and for persons with disabilities,
which corresponds to 8.8 persons per 1000 inhabitants.11
5
Cf. on previous STL regulations Kjønstad and Syse (2011), pp. 172 f.
6
Cf. Kjønstad and Syse (2011), pp. 170 f.
7
Cf. explanatory memorandum for amended version Prop 91 L 2010–2011, p. 340.
8
Norges Høyesterett, Judgment of 25 Sept 1990 in Case: lnr 106/1990, No. 88/1989,
Rt. 1990, p. 874.
9
Cf. on the previous provisions § 3-4 STL Kjønstad and Syse (2011), p. 185.
10
Cf. also Karlsson et al. (2012), p. 256.
11
Cf. data provided by Statistics Norway (Statistik sentralbyrå) at http://www.ssb.no/aarbok/tab/
tab-136.html [20/12/2012].
356 S. Weber
1.2 Monetary Benefits from Social Insurance
Monetary benefits from social insurance are provided for the coverage of particular
additional expenditures resulting from illness, injury, a medical condition or dis-
ability respectively. The so-called Basic Benefit (Grunnstønad) in accordance with
§ 6-3 FTL is allowed for expenses required for technical aids, prostheses, transport
or a guide dog for the blind, for instance. Pursuant to § 6-4 FTL, the so-called
Attendance Benefit (Hjelpestønad) may, under certain circumstances, be granted to
help cover the costs of special outpatient care requirements. As laid down in § 6-5
FTL, a Higher Rate Attendance Benefit may be provided for children or young
persons (Forhøyet hjelpestønad).12 In 2011, nationally 127,267 persons received
the Basic Benefit, while 83,659 persons received the Attendance Benefit.13
According to Chapter 9 FTL, persons who take care of or provide care to
children or other family members receive the so-called Care Benefit or, respec-
tively, Attendance Allowance (Omsorgs- or Pleiepenger), which serve as a substi-
tute compensating for time off from work. In its Chapter 16, the Social Insurance
Act provides for benefits for persons who have assisted or provided care to family
members for a minimum of 5 years (§ 16-5 FTL).14
2 Individual Services and Benefits
The following part describes the individual services provided by the municipal
health and care services, as well as the monetary benefits granted by social
insurance, insofar as they serve to cover the needs for help and assistance with
activities of daily living. Services related to school health, rehabilitation (§ 10-6
FTL) and work accidents (Chapter 13 FTL) are not included here.
2.1 Benefits and Services in Municipal Health

and Long-Term Care
The individual benefits and services provided by the communal health and long-
term care services are not conclusively listed in the law; they are merely derived
from the general obligations on the part of the communities and the assessed needs
of the person affected.
12
Cf. Kjønstad (2007), p. 307.
13
Cf. data provided by Statistics Norway at http://statbank.ssb.no/statistikkbanken [20/12/2012],
see respective entry.
14
Cf. Kjønstad (2007), pp. 730 ff.
2.1.1 Service Targets
In § 1-1 HOL, a general statutory target has been formulated. Accordingly, any
illnesses, impairments, ailments and disabilities shall be prevented; treatment for the
former shall be provided in order to ensure that such conditions can be overcome or,
respectively, that consequences thereof are reduced to a minimum (No. 1). Persons
affected shall be granted social protection and better living conditions; the aim is also
to contribute to their full and equal participation in society (No. 2). A further aim
formulated is for persons dependent on help to be able to live autonomously in their
homes for as long as possible (No. 3). To meet these objectives, an appropriate, high-
quality range of services shall be offered; this shall be made accessible to all persons
affected and meet the requirements of the individual case (No. 4 and 5). The
respective services must be provided without affecting the dignity or personal
integrity of the person dependent on help (No. 6), and on the guarantee that the
resources available are used to the best advantage (No. 7).15
The corresponding tasks of the communities are formulated by the legislator in
Chapter 3 HOL. Accordingly, the communities are obliged to offer the necessary
health and care services to persons residing in the community, unless these services
are covered by public or regional service schemes.16 The communities are respon-
sible for the planning, performance and evaluation of services; they may commis-
sion private providers for the performance of such services on the basis of the
relevant contracts (§ 3-1).17
2.1.2 Authorised Persons
In accordance with the new version of the statutory rules, the underlying basis for the
individual case can be found in the Act on Patients’ and Users’ Rights (PRL).18
Derived from its § 2-1a is the right of all patients or users to help as required, which
shall be provided through the municipal health and long-term care services. Particular
regulations regarding children can be found in Chapter 6 PRL. By way of this legal
separation the legislator has, for the purpose of clarity and comprehensibility,
effected a division between the tasks and obligations of the communities regulated
in HOL on the one hand, and the legal status of the individual according to PRL on
the other.19
15
Cf. Prop 91 L 2010–2011, p. 64.
16
Cf. on medical care provision Lov om spesialisthelsetjenesten (LOV-1999-07-02-61) as
amended by LOV-2012-06-22-47, LOV-2016-05-20-10 and LOV-2016-06-17-48 which regulates
hospital treatment, for instance.
17
Prop 91 L 2010–2011, pp. 134 f.
18
Lov om pasient- og brukerrettigheter (LOV-1999-07-02-63) as amended by LOV-2012-06-22-
46 and LOV-2015-12-11-97.
19
Prop 91 L 2010–2011, p. 61, as well as 344.
358 S. Weber
It is difficult to say what such claims are based on in the individual case. Both the
regulation of § 4-2 of the former Social Services Act and § 3-2 HOL leave the
communities considerable scope in the configuration of their respective service
packages; both regulations merely set an example of which services “should” be
made available. The underlying basis according to § 4-3 STL and to § 2-1a PRL in
this regard merely covered, and covers, the services actually offered by the com-
munities.20 In this context, even the economic situation and resources of a com-
munity may have an impact on the concrete claim, even though the communities are
to respect certain minimum standards in accordance with the law.21 Accordingly,
any assistance offered must not be manifestly inappropriate. Moreover, the deci-
sions of the communities are subject to judicial scrutiny also with a view to errors of
assessment or appreciation, for instance with regard to irrelevant considerations or
objectively unjustified difference in treatment.22
2.1.3 Common Types of Assistance Offered
Insofar as the content of § 4-3 of the former Social Services Act continues to be taken
as the underlying basis, benefits may be claimed by persons who are not able to look
after themselves, or who are fully or partially dependent on practical or personal
assistance with their activities of daily living, with age or type of disability not
constituting a relevant factor.23 The assistance services must be provided to the extent
necessary in accordance with general standards and individual assessments.24
However, the respective assistance services are not exhaustively listed in the
law. Just as the previous standardisation in § 4-2 STL, also § 3-2 Nos. 6 a to d HOL
merely contain an exemplary list which, in turn, may be understood as a catalogue
of commonly provided help services. This includes health services provided at
home (lit. a), personal assistance including both practical assistance with the
activities of daily living and guidance, as well as so-called contact people that
can provide support (lit. b). This can mean assistance with personal hygiene, help
with cleaning the flat or doing the washing, with meals, food shopping or cooking.
Contact people should particularly serve to contribute to a meaningful organisation
of the leisure time of the person they support.25 Finally, the law also lists inpatient
care services (lit. c) and services or benefits for carers (lit. d) as common types of
assistance.26 Common types of assistance not explicitly listed in the law are mobile
20
Cf. on the previous legal situation also Syse (2009), pp. 212 f.
21
See on this already Norges Høyesterett, Judgment of 25 Sept 1990 in Case: lnr 106/1990,
No. 88/1989, Rt. 1990, p. 874.
22
Kjønstad and Syse (2011), p. 174.
23
Cf. Kjønstad and Syse (2011), pp. 170 f.
24
Cf. Prop 91 L 2010–2011, p. 340.
25
Cf. Prop 91 L 2010–2011, p. 150.
26
Prop 91 L 2010–2011, pp. 173 ff.; cf. also Kjønstad et al. (2003), pp. 115 ff.
meal deliveries (meals on wheels), emergency call systems for the person’s house-
hold and special living arrangements for dependent persons.27
2.2 Municipal Care Wage
§ 3-6 HOL (previously § 4-2e LST) allows for further possible assistance provided
by the community, namely for the so-called Omsorgslønn (literally: care wage) for
persons who perform difficult or comprehensive assistance or long-term care tasks.
This first and foremost covers those who, pursuant to an obligation, assume tasks of
this sort, such as parents of minor children with a disability. A care wage may also
be granted to persons who, voluntarily or on the basis of a respective agreement,
provide assistance or care to persons with high-level needs due to illness, disability
or old age.28 Payment of a care wage is one possibility on the part of the community
to grant the necessary help. A community may therefore refuse payment of a care
wage in cases where the former provides the necessary help through other means.29
The specific conditions for payment of a care wage are stipulated by the
communities themselves. A general condition is for the relevant care services to
be provided in the household of the person in need of help. The recipient of the
benefits is the caregiver. However, the legal status of the latter is not further defined
by law. In practice, the communities “commission” caregivers to carry out the
respective tasks; yet, they do not enter into an employment relationship with them.
However, the care wage forms part of the taxable income and is also taken into
account for the calculation of pension payments (§ 3-16 FTL).30 On the other hand,
labour regulations with regard to working hours, leave arrangements or wage
continuation in the case of illness do not apply to caregivers.31
In 2010, 44% of persons in need of help whose caregivers obtained a care wage
were minor children; 18% of care recipients were older than 67 years of age. On
average, caregivers received a care wage of 5700 NOK per month for working 10.6
hours a week.32
2.3 Benefits from Social Insurance
On the one hand, benefits from social insurance are to compensate additional costs
arising from an illness, an impairment or ailment, or from a disability; on the other
27
Hagen et al. (2011), p. 9.
28
NOU 2011b:17, p. 17.
29
NOU 2011b:17, p. 18.
30
Cf. on this Kjønstad (2007), pp. 147 ff.
31
NOU 2011b:17, pp. 58 f.
32
NOU 2011b:17, pp. 18 f.
360 S. Weber
hand they are meant to provide financial compensation to persons who are forced to
temporarily interrupt their gainful employment in order to provide assistance or
long-term care to family members.
2.3.1 Grunnstønad
The so-called Basic Benefit is to cover recurrent additional expenditures for

technical aids in the broadest sense. § 6-3 FTL explicitly lists the costs for the
operation of technical aids (a), transport costs inclusive of expenses for operating
one’s own vehicle (b), for keeping a guide dog (c), for text phones (d), for the use of
prostheses, bandages etc. (e), for the provision of diet food (f) as well as for the
replacement of worn clothing and bed linen (g). Also included in this are the
additional electricity costs related to the use of electrical devices, or batteries for
hearing aids.33 Specific dietary habits due to illness are also taken into account.34
Yet, non-recurring costs such as the acquisition costs for prostheses, for instance,
are not covered by this Basic Benefit. Special transport costs owing to physical
impairments are only covered from the age of 70. The reference category in the
assessment for entitlement to Basic Benefit is a person not affected by impairments
due to illness, a relevant impairment or disability. In this context, “additional
expenditure” means any costs going beyond the comparable costs of transport
other persons living at the same place might incur. Apart from that, there are no
age restrictions for claiming the Basic Benefit.35
Basic Benefit is granted at six different non-taxable rates stipulated annually by
Parliament (Stortinget) that are paid out on a monthly basis. The additional expen-
diture must at least be equivalent to the first rate. For 2016 these rates have been
fixed at 670 NOK,36 1023 NOK, 1342 NOK, 1977 NOK, 2679 NOK and 3346 NOK
per month. Compared to the previous year, the rates have increased by just under
2%. The relevant rate is granted in accordance with the individual case and,
particularly, with the respective diagnosis. Detailed evidence of additional expen-
ditures is required only in the case of special costs for diet foods or in the case
of food intolerances. However, the written application must include appropriate
medical documentation, as well as suitable proof of the relevant additional expen-
diture to be expected.37
33
Kjønstad (2007), p. 312 (Note 2).
34
Trygderetten, judgment of 14 Jan 2005 in Case: TRR-2004-02283.
35
Cf. Kjønstad (2007), p. 315 (Note 11).
36
100 NKR ¼ ca. 10,50 €.
37
Cf. data provided by the Norwegian Labour and Welfare Administration (NAV) at http://www.
nav.no/Helse/Grunn-+og+hjelpestønad/Grunnstønad [29/06/2017].
2.3.2 Hjelpestønad
The so-called Attendance Benefit according to § 6-4 FTL is to cover the costs for
special home care needs or long-term care services required as a result of illness, an
impairment or disability, if such services are, presently or in future, to be carried out
by private persons, i.e. particularly by spouses, children, parents, other relatives or
neighbours. It covers daily living support, such as help with acts of personal hygiene,
food shopping, cooking and eating. Also to be taken into account is the need of those
affected for participation in society and for the development of individual compe-
tencies through guidance and training. There is a corresponding claim with a view to
the provision of long-term care and assistance to foster children (§ 6-4 Sent. 3 FTL).
In the case of children, however, long-term care or assistance is taken into consid-
eration only to the extent of the scope of services that children of the respective age
would typically not require (§ 6-4 Sent. 6 FTL). Visually impaired or blind persons
are also entitled to claim this benefit (§ 6-4 Sent. 7 FTL).
This cash benefit, too, is to cover the costs actually incurred, i.e. along with the
written application for the benefit, appropriate proof of the costs must be submitted.
Here too, the relevant costs must amount to at least the level of the first rate
stipulated annually by Parliament. The costs are based on the average costs for
help services of two to three hours’ duration per week.38 Should several family
members require help at the same time but not reach the threshold value stipulated
for each individual’s needs, the Attendance Benefit is paid on the condition that the
accumulated total exceeds this threshold value.39 As a rule, the first level rate is
granted for household help services, the second rate for assistance and long-term
care services. For 2016 these rates were fixed at 1117 NOK and 1201 NOK per
month, also showing an increase of just under 2%.40 According to § 6-4 Sent. 8 FTL
the Attendance Benefit takes precedence over the municipal care wage. When
issuing approval for the Care Wage to be granted, the communities may in turn
include in their calculations any Attendance Benefit paid (§ 6-4 Sent. 9 FTL).
However, the Attendance Benefit may not be used for co-payments to municipal
services.41
2.3.3 Forhøyet Hjelpestønad
For children and adolescents under 18 years of age who have a considerably greater
need for assistance than is covered through the ordinary Attendance Benefit, a
Higher Rate Attendance Benefit may be granted in accordance with § 6-5 FTL. This
38
Kjønstad (2007), p. 317 (Note 2).
39
Cf. Trygderetten of 10 Dec 2004 (TRR-2004-02264).
40
nav.no/Helse/Grunn-+og+hjelpestønad/Hjelpestønad [18/01/2013].
41
Kjønstad (2007), p. 317 (Note 2).
362 S. Weber
is subject to the condition that this additional payment increases the possibility of
the person in need to be able to continue living in his or her own household. The
granting of this benefit is, above all, based on the degree of physical or psycholog-
ical functional impairment, the scope of assistance or long-term care tasks to be
carried out and the time required for assistants to do so, as well as the need for
guidance or training in this context (§ 6-5 Sent. 4 FTL). A considerably higher need
for assistance is generally assumed if the scope of assistance or long-term care
exceeds the usual needs of a child of the respective age by more than seven hours
per week.42
The relevant reasons for the increased need must be stated in the application for
the benefit. This benefit, too, is tax-free and paid on a monthly basis. It is granted at
three rates fixed annually by Parliament which, in 2016, amounted to 2402 NOK,
4804 NOK and 7206 NOK respectively. The Higher Rate Attendance Benefit is, at
the longest, paid up to the month in which the child involved turns 18.43
2.3.4 Omsorgs- and Pleiepenger
Pursuant to Chapter 9 FTL parents who, due to assistance and long-term care
obligations towards their child, cannot engage in a gainful activity on a short-
term basis are granted a so-called Care Benefit (Omsorgspenger) in order to
compensate for their loss of income (§ 9-1 FTL). This also applies in cases where
the usual caregiver of the child is absent due to sickness. Sick days are to be attested
by means of a self-certification form or a medical certificate (§ 9-7 FTL).
According to § 9-6 FTL, this benefit is limited to 10 days per calendar year per
jobholder; in cases where two or more children are to be attended to, the limit can be
extended to an accumulated total of 15 days. For chronically ill children or children
with a disability, 10 additional days per calendar year are granted (Subpara. 2).
If the jobholder is a single parent, the number of days granted is doubled. Up to the
calendar year in which the child turns 12, the employer pays the Care Benefit for the
first 10 days in accordance with the provisions for continued payment of remuner-
ation (§ 8-16 FTL); for additional days, the employer is reimbursed the costs
through social insurance (§ 9-8 FTL).44
In certain circumstances § 9-10 through to § 9-12 FTL provide for Attendance
Allowance (Pleiepenger) granted by social insurance. Accordingly, parents receive
an Attendance Allowance during inpatient hospital or rehabilitation treatment of a
child under 12 if the latter needs continuous attendance or long-term care services
for a period of more than seven days. This also applies subsequent to such inpatient
treatment. If the child is chronically ill or has a disability, an Attendance Allowance
42
Kjønstad (2007), p. 319 (Note 1).
43
nav.no/Helse/Grunn-+og+hjelpestønad/Forhøyet+hjelpestønad [18/01/2013].
44
Cf. Kjønstad (2007), pp. 417 f.
of this type is paid until the child turns 18 (§ 9-10 FTL). In the case of a life-
threatening or serious illness in a child under 18, both parents can, if necessary,
receive the Attendance Allowance at the same time (§ 9-11 FTL). Furthermore,
Attendance Allowance is paid for up to 60 days to insured persons who, in their own
homes, provide long-term care to family members in their “final stages of life”
(§ 9-12 FTL).45
2.4 Basic Principles Concerning Service Provision
In Norway, too, the communal health and long-term care services and the cash
benefits from social insurance serve to fulfil the so-called holistic approach. No
matter what caused the need for help, residents are to receive through their
respective community those help services that meet their individual demands.
Individual partial services shall be coordinated in this context; they are to be
adjusted to individual needs and performed in accordance with professional stan-
dards. The person in need shall be able to preserve his abilities, or at least be put in a
position to participate in society and to lead a socially secured life in dignity,
regardless of income or housing situation.46
The services shall be of the highest possible quality, elaborated in collaboration
with the person in need, and preferably rendered with the active involvement of the
latter; at the same time, they are to take into account the limited resources of the
communities with regard to material and staff. The ultimate objective of the
services and cash benefits is to enable the person in need to lead a good quality
life.47 This also applies to benefits and services offered to persons who provide
assistance and long-term care to family members dependent on their help. These
principles are also expressed in the legal objectives of the underlying laws, such as
in § 1-1 HOL.
In light of the dependency of persons affected on help services, particular
emphasis is given to their self-determination. Their personal autonomy and rights
of choice should be central in the joint planning of services and actual use of the
latter. This applies both to the selection of services and to the specific circumstances
related to their delivery. The so-called customer perspective is to be adopted by the
communities as early as information on possible help is provided; it is also to be
taken into account in the configuration of services for each individual case and shall
ultimately serve as a quality reference.48 In this respect, outpatient services are
preferable to inpatient ones and, if possible, are to be supplemented by help
45
Cf. on this in general Kjønstad (2007), pp. 411 ff.
46
NOU 2004:18, p. 50; in the context of functional impairments cf. also NOU 2001:22, pp. 10 f.
47
NOU 2004:18, pp. 52 f.
48
NOU 2004:18, pp. 54 f.
364 S. Weber
provided by family members or friends to enable persons in need to continue to live

in their own households for as long as possible.
The conditions to be illustrated below in this context include the procedure for the
approval of benefits and services on the one hand and, on the other, the guidelines
and references for those persons and institutions that actually provide the individual
services to the person in need of long-term care. This includes the approval,
certification and supervision of professional service providers, the contractual
bases for their activity, their financing and quality assurance. Furthermore, an
outline shall be given of the conditions for non-professional service providers,
especially family members, as well as of particular forms of management,
e.g. the option of a so-called Personal Budget for persons in need of help.
3.1 Procedures of Application and Approval
Pursuant to § 13 of the Labour and Welfare Administration Act,49 services offered

by the State and the communities are jointly administered by the so-called local
NAV offices. The State and the communities are to make a corresponding agree-
ment in this regard in order to be able to guarantee a uniform and, in a given case,
individually adjusted, approval procedure for the necessary services.50 According
to § 3-5 HOL, the communities are obliged to provide “instant help” if this is
necessary. It does therefore not depend on the submission of a formal application,
but merely on the knowledge of the community of the existence of such a need.
Such knowledge may also be derived from general preventative activity in the
health and long-term care system within the meaning of § 3-3 HOL.
From § 3-4 HOL stems the obligation on the part of the community to cooperate
with other funding authorities, particularly with the districts and the State. If a
person in need for help is dependent on several partial services or, respectively, on
various service providers, the community is to consider such a need in its entirety as
part of its administrative procedures and must supervise it.
In order to implement the holistic approach and the obligation to cooperate with
regard to health, assistance and long-term care services, the overall living situation
of the person in need is to be taken into account (§ 4-1 HOL). For this purpose, an
individual plan is elaborated which is to stipulate the necessary help services
49
Lov om arbeids- og velferdsforvaltningen (LOV-2006-06-16-20) as amended by LOV-2011-12-
16-65 of 01 January 2012 and LOV-2014-12-19-74) of 01.01.2015.
50
according to the needs established.51 A precondition for this is the actual needs
assessment on the one hand and, on the other, also the autonomously made decision
of the person in need to make use of the services offered. The benefits in kind
provided by other funding bodies are also to be included in this context, e.g. by
hospitals, medical specialists or health care therapists, as well as eventual cash
benefits from social insurance (§ 7-1 HOL). To assure comprehensive service
provision, as well as the implementation of the plan and its continuous optimisation,
each community designates a coordinator (§ 7-2 HOL). The person in need or,
respectively, his/her relatives or representatives are to be involved in the planning
and configuration of the particular services to be granted. In this context, the option
for relatives to contribute to the long-term care provision as caregivers is also to be
given.52 Pursuant to § 7-3 HOL, the coordination obligation on the part of the
communities explicitly also extends to rehabilitation services. Chapter 6 HOL
furthermore regulates the obligation of the communities to cooperate with regional
healthcare providers on the basis of contractual agreements.
Given that no particular rules have been stipulated for the administrative proce-
dure, the so-called Administrative Procedure Act (FL)53 applies for proceedings in
accordance with § 2-2 HOL and § 2-7 PRL (formerly § 8-1 STL).54 This concerns
the principle of equality and the objectivity regarding the application of the law
(§§ 6 ff. FL), the obligation of the local authorities to notify and inform (§ 11 FL),
the confidentiality rules (§ 13 FL and § 12-1 HOL) and the duty to carry out the
procedure as fast as possible (§ 11a FL). The decision of the authority to grant a
benefit or service is to be recorded in writing and justification is to be given
(§§ 23 ff. FL); the decision is to be made known to persons affected (§ 27 FL).
Every person involved has the right to appeal against the decision of the authority
(§§ 28 ff. FL).55 The specific procedural rules governing social insurance can be
found in Chapters 20 to 22 FTL.
3.2 Professional and Non-professional Service Providers
In Norway, too, the provision of necessary long-term care and assistance services is
regarded first and foremost as a public task to be fulfilled by the communities.
Nevertheless, care provided through family members is of particular significance.
According to surveys from the year 2000, the proportion of family members
between 16 and 74 years providing (long-term) care to their relatives amounted
51
Cf. on this also NOU 2004:18, pp. 89 ff.
52
53
Lov om behandlingsmåten in forvaltningssaker—forvaltningsloven (LOV-1967-02-10) as
amended by LOV-2010-12-17-85 and LOV-2016-06-10-23, in force since 01.07.2016.
54
On procedural law in general cf. Oppedal (2012), pp. 66 ff.
55
On this in detail Syse (2012), pp. 105 ff.
366 S. Weber
to approximately 5% of the population. About 8% helped persons in need who were

not part of their household.56 One indicator for the growing significance of the
family with respect to the provision of assistance and long-term care to relatives is
the increasing use of benefits designed for caregivers.
3.2.1 Family Carers
The strong position of the communities in the context of health and long-term care
services and the quite predominant opinion in Norway that care and assistance
should be public duties has repeatedly given rise to the fear that insufficient
incentives are provided to promote the readiness of family members to carry out
such tasks themselves. There is no statistical evidence to prove this, even though the
proportion of informal help provided through family members is comparatively
small. Rather, it can be estimated that the extensive range of public services offered
encourages family members on their part to continuously participate in the provi-
sion of assistance and long-term care to their relatives. Nevertheless, the question as
to whether public service offers and help provided through family carers are
mutually complementary or rather exclusive remains controversial.57
Norway deals with the same set of issues as those that are illustrated in the
country report on Sweden, with the mere subjective understanding of “long-term
care activity” being hard to compare within the family context.58 This applies to
both the caregiver and the person receiving long-term care or assistance services.
Depending on which definition of long-term care is taken as a basis, it is particularly
the allocation of everyday tasks limited in scope that will vary. At the same time,
according to a survey 75% of persons older than 80 years of age receive or received
help from their children, nearly 40% from their grandchildren, and a good 25%
from friends.59
3.2.2 Benefits for Caregivers
As with the overall scope of benefits and services, a differentiation must also be made
with regard to benefits/services for caregivers: there are services provided by the
communal health and care services on the one hand, and those granted by social
insurance on the other. This means that the overall range of communal services
offered can first and foremost be considered as services targeted at the person in need
of care; however, certain types of services are in fact particularly geared at supporting
56
Cf. Ingebretsen and Eriksen (2004), p. 13.
57
Cf. NOU 2011a:11, p. 27, with evidence on the various studies.
58
Cf. Weber, Long-Term Care Benefits and Services in Sweden [Leistungen bei
Pflegebedürftigkeit in Schweden], 2018, p. 495 with further references.
59
NOU 2011a:11, p. 28.
the caregivers, in order to give them the opportunity to perform some of the care tasks
themselves within their family, for instance. This particularly includes relief mea-
sures (Avlastningstiltak) pursuant to § 3-2 Subpara. 1 No. 6 lit. d. HOL. It addition-
ally includes the so-called Contact People (Støttekontakt), by means of which family
carers are to receive relief with their assistance and long-term care activity for a
temporary period (§ 3-2 Subpara. 1 No. 6 lit. b HOL). Also of significance is the
support provided through self-help groups and further education and training mea-
sures for caregivers.60
3.2.2.1 Avlastningstiltak
Relief for caregivers may be provided in the form of various forms of support
measures that can be directed both at the person in need for long-term care and at
the caregiver. Regardless of the potential existence of a statutory obligation on the
part of the caregiver to provide assistance or long-term care, the aim is to leave
caregivers room to also see to their own needs and to engage in social contacts aside
from their engagement in caregiving activities. Relief measures in this context
include all services offered by the municipal services according to § 3-2 HOL,
particularly outpatient care services for a specific period of time, special daytime or
night-time care measures, or temporary accommodation in a semi-outpatient or
inpatient facility.61 8129 persons resorted to such relief measures in 2011; in 2008
this was the case for 7574 persons.62
3.2.2.2 Støttekontakt
With the aid of personal assistants, so-called Contact People, persons in need for
help can engage in activities they would not be able to perform on their own and
without assistance. This may range from the execution of personal projects to
activities scheduled in the context of organised programmes for particular groups
of persons in need. Especially in the field of leisure activities, e.g. for persons with
disabilities, this instrument is often used by the communities and other bodies
financing the respective programmes. The objective of offering the respective
assistant services is to benefit and relieve those who provide assistance and long-
term care to persons in need.63 Personal assistance services of this type were in
2011 used by 29,453 persons, as compared to 25,692 persons in 2008.64
60
Cf. Ingebretsen and Eriksen (2004), pp. 41 f.
61
Cf. Kjønstad and Syse (2011), p. 173.
62
Cf. data provided by Statistik sentralbyrå at http://ww.ssb.no/emner/03/02/pleie/tab-2012-07-
04-08.html [14/02/2013].
63
Cf. Kjønstad and Syse (2011), p. 173.
64
04-08.html [14/02/2013].
368 S. Weber
3.2.2.3 Financial Support
Caregivers or family carers can receive financial support through the

abovementioned Care Wage (Omsorgslønn), as well as through monetary benefits
from social insurance. Of particular significance in this context is the Attendance
Benefit (Hjelpestønad), as well as the Higher Rate Attendance Benefit, which
allows for a refinancing of the caregiver’s time spent providing assistance. This
also applies to the Care Benefit and the Attendance Allowance (Omsorgs- and
Pleiepenger), which are to compensate for loss of income owing to a temporary
cessation of gainful employment.
In 2011, a Municipal Care Wage was paid to 9264 persons, as compared to 8673
persons in 2008.65 In the third quarter of 2012, Care Benefit was paid in 1689 cases
in consequence of the illness of a child or his/her regular caregiver. Attendance
Allowance during this period was paid in 509 cases for children who received
inpatient services. In 2118 cases Attendance Allowance was paid for children with
a disability. In 3074 cases Attendance Allowance was granted as a cash benefit to
compensate for loss of income due to time off from work on grounds of serious
illness of a child. Long-term care to family members was provided in 573 cases.66
3.2.3 Non-profit and Private Long-Term Care Providers
Aside from the municipal health and care services, persons in need can also avail
themselves of non-profit and private long-term care providers. While it is true that
according to § 3-1 HOL the obligation to guarantee any necessary services remains
with the community, the latter may, pursuant to § 3-1 Subpara. 5 HOL, conclude
contracts with third parties regarding the service provision. On this basis, a
“privatisation” of service delivery has been effected to a certain extent, particularly
in elderly care.67 Notwithstanding the above, each individual naturally has the
option to finance from his/her own funds help services offered by private providers.
3.2.3.1 Freedom of Choice
The degree to which beneficiaries may choose from publicly financed services
depends on the applicable conditions of the respective community, the so-called
Brukervalgsordning. The extent to which a community offers freedom of choice
ultimately also depends on whether persons requiring services can indeed choose
65
04-08.html [14/02/2013].
66
Cf. data provided by the Norwegian Labour and Welfare Administration at http://www.nav.no
[14/02/2013].
67
Bogen (2011), p. 6.
from different providers who offer the respective services. Unlike in Sweden, there
is as yet no national statutory regulation with regard to a free choice system.
In 2007, only nine Norwegian communities, including big cities such as Oslo,
Bergen and Stavanger, had introduced a system of free choice for outpatient
services. Out of 431 communities, their share thus amounted to a mere 2.1%.
Three further communities were pondering the introduction of the relevant regula-
tions at the time.68 While in Sweden the number of communities with a system of
free choice has clearly increased since the introduction of the Act on Free Choice
Systems (LOV) in 2009,69 Norway’s count in 2012 for the field of outpatient
services showed a mere increase to 17 out of the then existing 429 communities,
representing a share of 3.96%.70
It can further be observed that communities sometimes make use of private
services—also outside the municipal boundaries—in order to be able to offer the
necessary services especially to persons strongly dependent on help. This refers not
necessarily to inpatient services, but also to certain types of assisted living in
special living arrangements that have been designed exclusively for a particular
clientele.71
3.2.3.2 Approval and Supervision
The “approval” of a private party for service provision is effected by way of a

contract that is to be concluded with the community in accordance with § 3-1
HOL. This contract can be concluded with individuals or corporate bodies. There
are no particular specifications for the content of the contractual agreements. In the
explanatory memorandum it is assumed that, where necessary in connection with
priorly stipulated legal framework conditions, special conditions are to be established
particularly with regard to the type and scope of services, their remuneration, as well
as the monitoring of the service provision through the community.72
Pursuant to § 1-2 HOL, the applicable legal specifications for private service
provision and for the provision of direct public services are identical. Aside from
that, the provisions of the Act on Patient’s Rights and the professional law of the
respective service providers apply. This means that private providers are, for
instance, subject to the regulations regarding staff qualification requirements, as
well as to the provisions regarding quality assurance and documentation of service
provision.73 The monitoring of private providers is thus the responsibility of the
contracting community on the one hand, and of the State supervisory authorities
68
Næringslivets Hovedorganisasjon/Servicebedriftenes Landsforerning (2007), p. 10.
69
Cf. Weber (2018).
70
Næringslivets Hovedorganisasjon (2012), p. 7.
71
Prop 91 L 2010–2011, pp. 163 f.
72
Prop 91 L 2010–2011, p. 164.
73
Cf. Bogen (2011), p. 8.
370 S. Weber
on the other, if the service provision falls within their remit. According to § 11-2
HOL, the beneficiary’s use of privately provided services may imply particular
co-payments on his part.
A legal claim to conclude the respective contracts does not exist on the part of
private providers; rather, in fulfilling their obligation under § 3-1 HOL, it is the
communities that decide on the necessary scope of private services to be offered. In
doing so, as well as in selecting the contractual partners and configuring the
contracts, the communities are bound by the general rules governing administrative
law. So far, the legislator has obviously had no reason to regard this coexistence of
providers as a form of competition; it much rather deems the additional availability
of private services to be a necessary supplement with respect to the community’s
obligation to ensure that provision is guaranteed. An increase in the number of
private service providers may potentially effect more detailed regulations.74
3.3 The Personal Budget as a Special Form of Management
In Norway, too, it is possible for persons involved to receive a so-called Personal

Budget instead of individual benefits in kind. § 3-8 HOL explicitly allows for the
so-called User-Controlled Personal Assistance (Brukerstyrt personlig assistanse—
BPA). The Personal Budget represents an alternative form of management regard-
ing help services within—but also outside—a person’s own household, which
grants those affected, and particularly persons with severe functional impairments,
a higher degree of self-determination. In this context, the person in need of help
may act as an employer and engage his/her own personal assistants. Another
possibility is for the community to assume the role of the employer and to only
leave the actual management of the service provision to the beneficiary.75 The aim
of this form of service is, on the one hand, to ensure the flexible and—to the greatest
possible extent—resource-saving deployment of help, as well as a high degree of
participation on the part of the beneficiary, which also contributes to a more
effective quality assurance.76
The Personal Budget thus facilitates the granting of services pursuant to § 3-2
Subpara. 1 No. 6 lit. b HOL, i.e. services of “practical assistance” with the activities
of daily living and instruction in this field. Accordingly, the communities are
generally obliged to offer a Personal Budget as a type of service; yet, within the
scope of the legal specifications, they are free to decide which of the services are to
be provided in the form of benefits in kind and which are to be provided in the form
of a Personal Budget. In the individual case up for decision, they will have to take
74
Cf. Prop 91 L 2010–2011, pp. 164 f.
75
Cf. circular of the Norwegian Ministry of Health and Care Services (Rundskriv) I-20/2000 til lov
om sosiale tjenester of 1 June 2000, clause 5.
76
NOU 2011a:11, p. 58.
into account the participation rights of the user, as stipulated in § 3-1 PRL. The user
therefore has a significant say in the actual configuration of the service package.
The request for a Personal Budget can therefore only be rejected if the opposing
interests of the community far outweigh the user’s interests. A Personal Budget is
considered particularly for persons with comprehensive assistance requirements
who, at the same time, have the possibility to lead an active life outside their
households and who are able to manage the provision of services themselves. In the
meantime it has also become possible for persons represented by their parents or
caregivers to claim a Personal Budget.77
In 2005, a total of 1833 persons made use of the possibility to receive a Personal
Budget, 127 one whom were older than 67 years of age. Until 2011, the number of
beneficiaries continuously increased to 2904, with 270 persons older than 67 years
of age.78 In 2010, the employer function was assumed by the communities in
approximately 50% of the cases, while about 10% of persons in need for help
assumed this role themselves.79 Worth mentioning in this context is ULOBA
(Uavhengig Liv Oslo—begrenset ansvar), an organisation founded by roughly
800 persons with disabilities who employ 6000 assistants employable within the
scope of a Personal Budget.80 In 2010, ULOBA acted as employer of assistants in
roughly one third of the cases. Apart from this organisation, there were only four
further institutions that addressed this purpose in 2010: two providers of care homes
for the elderly, one day-care centre and one assisted work facility for the elderly.81
3.4 Financing
Financing and management of the illustrated services is mainly the task of the
communities; the latter are also responsible for providing any further health care
services as required. Financing is based particularly on the municipal tax revenues
(§ 11-1 HOL), a governmental framework grant pursuant to § 11-5 HOL, and
earmarked State subsidies. Apart from this, the communities effected mutual com-
pensations for outlay in cases where services were drawn outside the community of
residence. The specifications hereof are laid down by ministerial order.82 In 2010, the
communities spent roughly 78 billion NOK on health and long-term care services,
77
Cf. circular of the Norwegian Ministry of Health and Care Services (Rundskriv) I-15/2005 of
23 Dec 2005, p. 2.
78
04-08.html [14/02/2013].
79
NOU 2011a:11, p. 58.
80
Cf. own presentation of the organisation at http://www.uloba.no [29/06/2017].
81
NOU 2011a:11, p. 58.
82
Kjønstad and Syse (2011), pp. 166 f.
372 S. Weber
which represented a share of 26.4% of their total expenditure. Co-payments borne by

the beneficiaries amounted to a little less than 5.5 billion NOK.83
3.4.1 Municipal Tax Revenues
Like the communities in the other Nordic states, the Norwegian ones, too, are
entitled to levy taxes and charges. This applies to both the municipal income tax and
to municipal capital and property taxes. On a yearly basis, the government defines a
payment corridor between a minimum and a maximum rate for these taxes in
accordance with § 15-2 of the Norwegian Tax Act (Skatteloven84). In practice,
however, all communities have been fixing the maximum rate for income tax since
1979; this rate has been at 28% since 1992. As for capital and property taxes, local
differences exist.85
Furthermore, a governmental framework grant is effected for municipal tasks. In
2010, the communities were free to dispose of 69% of their revenues as they
deemed fit and proper, and thus could put particular emphasis on health and long-
term care services. 64% of the revenues were communal tax revenues, while 36%
came from State resources. The remainder of the—non-freely available—revenues
consist of earmarked subsidies and charges.86
3.4.2 State Subsidies
Of major significance for the financing of the health and care services, apart from
the municipal tax revenues, is the annual so-called governmental framework grant
pursuant to § 11-5 HOL and—as described above—the benefits to be borne by
social insurance. The distribution of the framework grant among the communities
depends on the—non-influenceable—revenues and expenses of the latter, as well as
on the demand for municipal services. The communities are thus to be given the
possibility of being able to offer an adequate range of services without levelling
politically intended differences in their range a priori.87 Aside from that, further
subsidies are granted for particularly cost-intensive expenses such as the operation
of inpatient facilities. By having individual services or benefits financed through
social insurance, the communities are ultimately also indirectly supported by the
State.88
83
Hagen et al. (2011), pp. 11 and 15.
84
Lov om skatt av formue og inntekt (LOV-1999-03-26-14) as amended by LOV-2012-12-07-76
of 1 Jan 2013.
85
NOU 2005a:6, pp. 84 f.
86
Hagen et al. (2011), p. 11.
87
Cf. NOU 2005b:18, pp. 37 f.
88
Hagen et al. (2011), p. 13.
As the applicable tax rates do not put the communities in a position where they
could exhaustively fulfil their general obligation to provide services to persons in
need, the communities ultimately depend on these payments. In the field of outpa-
tient health and long-term care services this mainly applies to the benefits and
services granted through social insurance, which represent a significant part of the
overall provision.89
3.4.3 Co-payments by Beneficiaries
Pursuant to § 11-2, the communities may demand co-payments from patients or

users respectively, especially in cases where private providers are engaged. The
details are specified in a decree of the Norwegian Ministry of Health and Care
Services.90 It takes account of co-payments both for in- and outpatient services.
However, the possibilities of demanding co-payments for outpatient services are
limited. Pursuant to § 8 of the decree, the communities are entitled to regulate
co-payment themselves and to stipulate the respective rates for services according
to § 3-2 Subpara. 1 No. 6 b HOL. This applies, for instance, to household assistance
(cleaning, washing, cooking).91 However, no co-payments must be levied for
services that cover the basic needs of a person dependent on help. The decree
herein explicitly includes assistance with getting up, lying down, personal hygiene,
using the toilet, dressing, eating, and assistance as necessary (§ 8 Subpara. 2). In the
calculation of the beneficiary’s share the communities must not exceed the actual
costs incurred by them. The co-payment is calculated on the basis of the average
hourly wage for services of this type plus social security contributions and admin-
istrative costs (§ 9 of the decree).
In their determination of the amount of the co-payment, the communities are to
take into account the financial situation of the beneficiary in the individual case.
The co-payment is therefore to be limited to that level which is necessary to allow
persons affected to keep covering their running costs, as well as their provisioning
expenditures. Recourse to their capital is excluded (§ 9 Subparas. 3 and 4).
According to § 10 of the decree, these calculations are based on the taxable income
of the household, with the Attendance Benefit (Hjelpestønad) added to and the Care
Wage (Omsorgslønn) left out of the equation. As long as the taxable income is
below twice the basic amount, co-payments are not to exceed 200 NOK per month.
The Basic Amount (Grunnbeløpet) is a calculation variable used by social insur-
ance (§ 1-4 FTL) to determine the amount of sick pay and other monetary benefits.
89
Øien et al. (2012), p. 259.
90
Forskrift om egenandel for kommunale helse- og omsorgstjenester (FOR 2016-12-20-1825)
from 01.01.2017.
91
Cf. data provided by the Ministry at http://www.regjeringen.no/nb/dep/hod/tema/Helse-_og_
omsorgstjenester_i_kommunene/Egenbetaling-i-og-utenfor-institusjon.html?id¼434597 [05/02/
2013].
374 S. Weber
The Basic Amount is stipulated on an annual basis and, since 1 May 2017, has been
at 93634 NOK.92
Excluded from co-payment, however, is temporary inpatient care for persons in
need of long-term care which is to particularly serve the purpose of relieving
caregiving family members (§ 1 Subpara. 2 lit. a of the decree). Otherwise, short
stays may incur co-payments amounting to 155 NOK per day or, respectively,
80 NOK for individual daytime or night-time accommodation (§ 4 of the decree).
3.4.4 Expenses of the Communities
Since the 1980, the expenses for health and long-term care services incurred by the
communities were subject to continuous change, the main purpose being to obtain
greater service effectiveness and better quality. In this context, the communities
assumed responsibility for persons with disorders of psychological development,
and also took over the responsibility for the hospitals from the administrative
districts. A strategic shift was effected from inpatient service provision through
traditional institutions to an intensified setting up of various forms of assisted living
and outpatient services. As a consequence, there were fewer places were offered in
traditional retirement homes. In 1970, there were still 11,683 places, while in 2010
only 1196 places could be offered. Due to this circumstance, persons requiring
extensive help services partly had to be accommodated in hospitals. The bed
occupancy rate rose from 6782 in 1970 to 38,455 in 2010. By contrast, the
combination of nursing and retirement home, previously a common feature, has
meanwhile lost its significance (1970: 13,100 places, 2010: 1667 places).93
The focus of help services has also changed. The proportion of beneficiaries
requesting only practical assistance with everyday tasks has decreased from nearly
50% to 25% between 1997 and 2010. However, long-term care and health care
services are now in greater demand than social assistance services. Since greater
focus has been put on outpatient care, the expenses of the communities for the latter
have, since 2007, exceeded the costs for inpatient services.94 This development
must be seen critically, since the rules for financing may be an incentive for the
communities to offer inpatient services to persons with a high income rather than to
those with a low one due to the circumstance that co-payments are earnings-
related.95
The community expenditures have risen steadily over the years. While in 1991 a
little more than 30 billion NOK were spent, the amount was 40 billion NOK in
1999. The limit of 50 billion NOK was exceeded in 2006. In 2010, health and long-
term care service provision already cost the communities roughly 78 billion NOK.
92
Cf. Kjønstad (2007), pp. 52 f.
93
Cf. Borgan (2012), pp. 14 ff., 28.
94
Borgan (2012), p. 16.
95
Øien et al. (2012), pp. 261 f.
84.6% thereof originated from freely available municipal tax revenues and govern-
mental framework grants (approximately 66 billion NOK). This was supplemented
by earmarked State subsidies to the amount of 6.57 billion NOK. The remaining
financial requirements of the communities were met by means of levies and charges
for services provided by the latter (2010: 5.5 billion NOK).96
3.5 Quality Assurance
According to § 4-2 HOL, each provider of health and long-term care services is
obliged to assure patient and user safety during service provision; further, to make
sure that a systematic management for the safeguarding and improvement of the
service quality is maintained. Extensive documentation obligations shall support
this purpose. The service providers are, pursuant to § 5-9 HOL, subject to the
supervision of the communities, which are initially responsible for organising the
proper provision of services, as well as to the supervision of the administrative
districts and the State.
3.5.1 Quality Requirements
The legal quality requirements regarding health and long-term care services can be
found in § 1-1 HOL, whose No. 4 names quality assurance as a legal duty. § 1-1
PRL provides for services of “good quality”. § 4-1 HOL substantiates this in parts.
Accordingly, assistance services are to be provided in a coordinated way pursuant
to a holistic approach (lit. a), patients and users of services are to be respected in
their dignity (lit. b), the service provider and staff employed must be capable of
complying with the legal provisions (lit. c) and have the necessary professional
competence. For the purposes of quality assurance and quality development a
systematic quality management system shall be deployed (§ 4-2 HOL).
To assure high quality help services, the patient and user rights pursuant to PRL
apply: § 2-2 PRL, for instance, provides for the right to satisfying treatment.
Further, PRL stipulates the right to a treatment plan (§ 2-5 PRL), participation of
the person involved (§ 3-1 PRL) and information (§ 3-2 PRL). The right to inspect
the documentation follows from Chapter 5 PRL.
Still based on the previous laws regarding the municipal health care service and
the social services, further legal provisions were issued regarding the quality of
health and long-term care services provided by private parties.97 In line with its §
96
NOU 2005a:6, p. 85.
97
Forskrift om kvalitet i pleie- og omsorgstjenestene for tjenesteyting etter lov av 19/11/1982
No. 66 om helsetjenesten i kommunene og etter lov av 13/12/1991 im sosiale tjenester (FOR-2003-
06-27-792).
376 S. Weber
3, the communities are to establish a system and procedure that ensures the timely
and sufficient service provision according to the individual treatment plan. The
services are to be coordinated according to the aforementioned holistic approach
and to be provided on a continuous basis; further, they are to be adjusted in the most
flexible way possible to the needs of the beneficiary. Once again, the right of
beneficiaries or, if applicable, their relatives to participation must be noted.98
This is followed by a range of conditions that the service providers must observe.
The service providers must guarantee, for instance, that services are provided in a
respectful way, that their provision is calculable and safe, that the self-
determination and autonomy of the beneficiary is retained, that the latter is
nourished in an adequate way, that he/she has a range of options to choose from
and that his/her needs are fulfilled to the furthest extent possible. One explicit
requirement, for instance, is a normal day and night routine that spares the person
requiring help unwanted and unnecessary confinement to bed. These are also
criteria that the communities will have to measure up against when delivering
their own services.99
As a rule, the Norwegian quality management follows the so-called Deming
Cycle, which consists of four steps, namely planning, execution, review and
reaction. Of particular importance for the success of the quality management is
the relevance awarded by the provider to factors like quality assurance and quality
standards, participation of the management level, process orientation, quality
control measures, involvement of staff and actual focus on the beneficiaries.100
3.5.2 Documentation Requirements
Both the communities and private providers are obliged to document service
provision for each individual case (§ 5-10 HOL). For this purpose, an electronic
database has been provided for by statute that is to be continually optimised. The
basis for the provision of services in each case is the personal assistance plan
according to § 7-1 HOL, which is to be jointly established by the communities
and, if applicable, further service providers on the basis of individual needs tests
and the respective benefits or services granted.101
The obligation to document service provision follows from § 2-1 HOL in
connection with the provisions of the Norwegian Health Care Workers Act
(HPL),102 which pursuant to § 2 of the latter, first and foremost apply to direct
health care services, but which are to be accordingly administered to the “other”
98
Prop 91 L 2010–2011, p. 272.
99
Cf. also Prop 91 L 2010–2011, pp. 266 ff.
100
Kjøs et al. (2008), p. 433.
101
Cf. Prop 91 L 2010–2011, pp. 361 ff.
102
Lov om helsepersonell (LOV-1999-07-02-64) as amended by LOV-2012-06-22-47, LOV-
2016-06-17-49 of 01.01.2017, LOV-2016-06-17-47 of 01.01.2017.
health and long-term care services in terms of § 3-2 HOL. Pursuant to § 39 HPL,
there is an obligation to keep a journal for each beneficiary. The journal must list the
relevant and necessary data on the person in need, as well as services received in
order to also keep staff of other service providers informed. The journal also serves
to be able to fulfil the obligation to notify the authorities, if required (§ 40 HPL).
The specifications regarding type and extent of such documentation are regulated
by ministerial decree.103 § 8 of the latter, for instance, contains detailed specifica-
tions regarding the content of a patient journal; wherever possible, these are also to
be observed by the health and long-term care service providers.104
For the purpose of quality assurance and optimisation, such documentation will
also serve as a monitoring measure for service providers, communities and admin-
istrative districts. In the case of court procedures, these patient journals will also be
relevant. Beneficiaries are generally entitled to inspect such documentation (§
41 HPL, § 11 of the administrative regulation).
3.5.3 National Supervision
As a rule, it is the communities that have the shaping power over quality assurance,
as well as over the organisation and financing of services. However, State supervi-
sion exists and is executed by the administrative districts pursuant to § 12-3 HOL.
In this respect, the provisions of Chapter 10 A of the Local Government Act
(KL) apply.105 State supervision accordingly extends to general technical matters
and is exercised by the administrative districts. Furthermore, according to the
applicable benefit laws, the administrative districts may review the decisions of a
community in each individual case and, if necessary, provide redress after objection
of a person involved. To this extent, the administrative districts exercise technical
and legal supervisory functions (§§ 60b, 60c KL).106
In addition, the Health Directorate formulates technical guidelines at national
level with regard to service provision in the communities. The Health Directorate is
answerable to the Norwegian Ministry of Health and Care Services and its task is to
develop nationwide measures and procedures at sub-legal level in order to optimise
quality assurance. Such guidelines serve to implement specific standards, to set
priorities in service provision and also to emphasise the ethical aspects of health and
care services. Although these guidelines are not binding even for the service pro-
viders, they are indicative of the understanding of the supervisory authorities
103
Forskrift om pasientjournal (FOR-2000-12-21-1385) as amended by FOR-2013-01-17-61 and
by FOR-2016-12-20-1848 of 01.01.2017.
104
Cf. also Molven (2006a), pp. 233 ff.; Molven (2006b), pp. 169 ff.
105
Lov om kommuner og fylkeskommuner (Kommuneloven—LOV 1992-09-25-107) as amended
by LOV-2012-05-25-28 of 01.07.2012, LOV 2016-06-17-60 of 01.07.2016.
106
Cf. Prop 91 L 2010–2011, pp. 398 ff.
378 S. Weber
regarding the regulative framework and good practice, thus at least effecting a
direct impact on the actual service provision.107
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Rapport 2012. Oslo
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The Legal Position of Persons Dependent
on Long-Term Care in the Republic of
Poland
Ariel Przybyłowicz
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 382
2 Health Care Services Provided by the Health Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 387
3 Social Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 392
3.1 Benefits in Kind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 393
3.1.1 General and Professionally Provided Long-Term Care Services . . . . . . . . . . . 393
3.1.2 24-Hour Care Services in Family Assistance Living Groups . . . . . . . . . . . . . . . 394
3.1.3 Daytime Services in Support Centres . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 394
3.1.4 Long-Term Care Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 395
3.1.5 Commercial Service Provision in Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . 397
3.2 Cash Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 397
3.2.1 Benefits Granted for an Unlimited Period of Time . . . . . . . . . . . . . . . . . . . . . . . . . . 397
3.2.2 Benefits Granted for a Limited Period of Time . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 398
3.2.3 Targeted Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 398
3.2.4 Payment of Social Security Contributions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 398
3.2.5 Long-Term Care Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 399
3.2.6 Long-Term Care Benefit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 400
3.2.7 Social Pension . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 400
4 Social Security Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 401
5 Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 404
6 Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407
7 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 411
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 412
The article is based on the legal situation as of 26 January 2012.
A. Przybyłowicz (*)
University of Wrocław, Faculty of Law, Administrations and Economics, Wroclaw, Poland
e-mail: ariel.przybylowicz2@uwr.edu.pl

https://doi.org/10.1007/978-3-319-70081-6_10
382 A. Przybyłowicz
1 Introduction
In recent years, Polish literature has increasingly focused on long-term care and
persons dependent on it. The reason is obvious: Polish society is ageing and the
trend is likely to continue. According to the Central Statistical Office of Poland
5,153,000 persons in Poland were older than 65 years in 2010, which is a proportion
of 13.53% of the overall population. By 2035, this figure will have risen to
8,358,000 persons, representing 23.22% of the population.1 Also the number of
persons aged 80 and older will see a drastic rise: in 2009, there were 1,252,000
persons of this age group living in Poland, while in 2035 this number will have
doubled to 2,574,000 persons.2 The relevance of these figures must not be
underestimated, as most persons dependent on long-term care are elderly per-
sons—particularly those referred to as the “old elderly” (old persons aged 75–85
years) and the “very old elderly” (aged 85 and older).3 This is to say, however, that
the topic of long-term care is, naturally, not only relevant for old persons, but for all
age groups of society. These demographic changes pose a great challenge to society
and the State. The economic development and mobility of young persons has led to
the circumstance that the family today (children, grandchildren) can rarely guaran-
tee the provision of long-term care to the older generation, which in former times
had been quite the common thing to do. Thus, certain measures must be taken which
guarantee a life in dignity to the elderly and particularly to persons dependent on
long-term care. Long-term care measures are costly, however: the public expendi-
tures in this field amounted to approximately 10 billion PLN in 2005 alone, and had
increased to 13 billion PLN by 2008. According to B. Wie˛ckowska and J. Koettl,
public expenditures for long-term care will see a rapid rise—up to 21.5 billion PLN
by 2020, 35.5 billion PLN by 2030 and 71 billion in 20604 (this being an optimistic
estimate). Unless the long-term care system and its financing structure are changed,
this will have drastic impacts on the State budget. The lawmakers are, already at
this stage, very aware of the fact that the system of long-term care must undergo
fundamental reforms. This will be discussed in chapters “Long Term Care in
Hungary” and “Long-Term Care Benefits and Services in Italy”. The first chapters
shall describe the long-term care benefits and services currently granted to persons
who need them, i.e. benefits granted through the social insurance system or health
insurance schemes, or in the form of social assistance.
First, however, a definition must be found for the phrase “dependent on long-
term care” or, respectively, “long-term care dependency”, i.e. what can be under-
stood by this in the Polish legal system when it comes to discussing the benefits to
be awarded to persons dependent on long-term care. This is necessary in order to
determine the circle of beneficiaries. Unfortunately, this is not an easy task. No
1
Demographic Yearbook (2010), p. 167.
2
Population Forecast 2008–2035 (2009), p. 204.
3
Szweda-Lewandowska (2007), p. 10.
4
Wie˛ckowska and Koettl (2010), p. 11.
The Legal Position of Persons Dependent on Long-Term Care in the. . . 383
definition of “long-term care dependency” or “persons dependent on long-term

care” has been laid down in the Polish legal system. In the Act concerning
occupational and social rehabilitation and the employment of disabled persons5
(hereinafter called Disability Act), disability has been defined as a “permanent or
temporary incapacity to fulfil one’s societal role(s) due to the permanent or long-
term impairment of certain physiological functions, resulting in an incapacity for
work in particular.”6 The Disability Act distinguishes and defines three levels of
disability. The category of severely disabled persons includes persons with
impaired physiological functions who are fully incapacitated for work or, respec-
tively, who can exercise their profession only under specific protective conditions,
and who—owing to their inability to lead an independent life—require permanent
or temporary long-term care or assistance from others in order to be able to
participate in society.7 The category of persons with moderately severe disabilities
includes persons with impaired physiological functions who are fully incapacitated
for work or, respectively, who can exercise their profession only under specific
protective conditions or who require provisional or partially provided long-term
care or assistance from others in order to participate in society.8 The category of
persons with moderate disabilities includes persons with impaired physiological
functions whose capacity for work is considerably reduced by comparison with that
of persons without any physiological or psychological disability and similar pro-
fessional skills; it also includes persons whose ability to participate in society is
limited, yet can be compensated for with the aid of orthopaedic devices, specific
appliances or technical means.9 Not every disability must thus automatically mean
long-term care dependency (or, in other words, the incapacity to lead an indepen-
dent life), as the Disability Act assigns particular objectives to this term—such as
the occupational and social rehabilitation of persons with disabilities.10 Notably, it
is only the definition of severe disability that is linked to the incapacity to lead an
independent life, the latter of which has been defined in Art. 4 Para. 4 of the
Disability Act as a permanent or temporary impairment of the physiological
functions to the extent that the pursuit of the basic everyday needs (i.e. self-help,
mobility and communication) is possible only with the aid of others. Note must,
however, also be taken of the fact that, according to the aforementioned definition,
also persons with moderately severe disabilities require long-term care or assistance
from others in order to be able to participate in society, which might lead to the
assumption that they, too, are to be counted among those dependent on long-term
care. The respective disability and degree of the latter are established by the
5
Ustawa o rehabilitacji zawodowej i społecznej oraz o zatrudnieniu osób niepełnosprawnych,
consolidated text Dz. U. [Law Gazette] 2011, No. 112, Position 721.
6
Art. 2 Item 10 Disability Act.
7
Art. 4 Para. 1 Disability Act.
8
9
10
Augustyn (2010), p. 8.
Disability Determination Board of the relevant district (in the first instance) and the
Disability Determination Board of the respective voivodeship (in the second
instance).11
The inability to lead an independent life has also been defined in the Act on
Old-Age Pensions and Pensions from the Social Insurance Fund12 (hereinafter
termed Pension Act), whereby the inability to lead an independent life is established
if a person’s physiological functions are impaired to the extent that the pursuit of the
basic everyday needs is only possible through the assistance of others.13 At this
point, the provisions of Art. 12 of the Pension Act should be cited briefly, as they
contain a definition of ‘incapacity for work’ as required for pension purposes. In
terms of the Pension Act,14 incapacity for work applies to persons who have, in part
or full, lost their capacity for work due to physiological impairments and who are
not expected to retrieve their capacity for work even after vocational retraining.
A person is considered fully incapacitated for work, if he or she has lost the capacity
to carry out any kind of work15; partial incapacity for work applies to persons who
have, to a major extent, lost their capacity for specific work corresponding to their
personal qualifications. To answer the purposes of the Pension Act, incapacity for
work and the inability to lead an independent life is established by a physician
commissioned by the Polish Social Insurance Institute (in the first instance) and by
the Medical Commission of the Social Insurance Institute (in the second
instance).16 This must be mentioned in this context, as certain (medical) findings
regarding the incapacity for work or the inability to lead an independent life in
terms of the Pension Act are put at an equal level with the findings regarding
disability in terms of the Disability Act. According to the Disability Act the
procedure is as follows17:
a) the finding attesting to full incapacity for work and the inability to lead an
independent life18 is put at an equal level with the finding attesting to severe
disability;
b) the finding attesting to the inability to lead an independent life19 is put at an
equal level with the finding attesting to severe disability;
c) the finding attesting to full incapacity for work20 is put at an equal level with the
finding attesting to moderately severe disability;
11
Art. 6 Disability Act.
12
Ustawa o emeryturach i rentach z Funduszu Ubezpieczeń Społecznych, consolidated text
Dz. U. [Law Gazette] 2009, No. 152, Position 1227.
13
Art. 13 Para. 5 Pension Act.
14
15
16
Art. 14 Pension Act.
17
Art. 5 Disability Act.
18
Art. 12 Para. 2 and Art. 13 Para. 5 Pension Act.
19
20
d) any findings attesting to partial incapacity for work and regarding the useful-
ness of a vocational retraining measure21 are put at an equal level with findings
attesting to moderate disability.
This means that persons who are attested to full incapacity for work and the
inability to lead an independent life, or only to the inability to lead an independent
life, or only to incapacity for work, are to be considered as persons with severe or,
respectively, moderately severe disabilities. Consequently, these persons should
also be included in the category of persons dependent on long-term care.
At this point, attention must also be paid to another aspect of disability. In the
legal literature, three types of disability are claimed to exist in Poland: disability
recognised by law, biological disability and disability acknowledged under legal
and biological aspects.22
Disability recognised by law must, as has been explained above, be attested by way
of a medical report.
Biological disability does not require a medical report, but depends on the subjec-
tive assessment by persons who consider themselves to be with disability.
Disability acknowledged under legal and biological aspects relates to persons who
have been attested their disability by way of a medical report and who also
subjectively consider themselves to be with disability.
This distinction is relevant, since around 30% of persons with a legally attested
disability subjectively do not feel any impairment of their bodily functions that
would make their everyday life more difficult. Around 50% of persons with
disability are persons considered to be with disability under both legal and biolog-
ical aspects. Around 20% of persons with disability in Poland are with ‘biological
disability’ but cannot furnish any medical proof of their disability, even though they
subjectively require assistance in everyday life.23 It must be noted, therefore, that
nearly 1/3 of persons with a medically attested disability factually do not require
any help, since they subjectively do not feel impaired in any of their body func-
tions.24 There is, by contrast, a group of persons who have not been attested any
disability, but who indeed require assistance in everyday life. This shows that the
disability assessment system is largely inconsistent.
One could now ponder whether the inability to lead an independent life (alter-
natively called dependence) is, in fact, the same as long-term care dependency. I
approve of this supposition, and in my further deliberations assume that persons
unable to lead an independent life or, respectively, dependent persons, may be
considered as persons dependent on long-term care. However, the Polish legislator
has plans to coin a definition of long-term care dependency, and therefore the
21
Art. 12 Para. 3 in connection with Art. 119 Para. 2 and 3 Pension Act.
22
Kozierkiewicz and Szczerbińska (2007), p. 14.
23
24
Wilmowska-Pietruszyńska (2010), p. 43 assumes that this concerns approximately 1/4 of all
persons with disability.
definition of dependence proposed by the Parliamentary Group for Elderly Persons

shall be given here. This parliamentary group deals, among other things, with the
elaboration of a legislative proposal in order to provide social insurance protection
against the risk of dependency; it is highly probable, therefore, that this definition
will in future turn into a statutory definition. Dependence has been defined as the
inability to lead an independent life which has resulted from deficiencies or
impairments of the bodily functions owing to illness or injury, and which makes
permanent or long-term assistance or care through other persons necessary as
regards the activities of daily living in the field of nourishment, mobility, personal
hygiene, communication and household maintenance.25 One may say, therefore,
that the Polish proposal for the definition of dependence corresponds to the German
term of long-term care dependency. The creators of the definition are also aware of
the fact that the proposed definition still requires further specification. Dependent
persons (or, according to current terminology, persons who are unable to lead an
independent life) are granted certain benefits, among which are cash benefits as well
as benefits in kind. Benefits in kind are ensured particularly through the health
insurance and social assistance schemes; the most significant cash benefits are
guaranteed through social insurance and social assistance. In this context, the
benefits in kind ensured through the health insurance scheme are of special import;
they are often called long-term care services. According to the Ministry of Health,
long-term care means long-lasting, continuous and professional care and rehabili-
tation measures, as well as the continuation of pharmacological and dietary treat-
ment. A different definition is given by A. Kozierkiewicz and K. Szczerbińska (and
is also based on the one issued by the Ministry of Health): according to the them,
long-term care refers to the chronically and seriously ill, whose state of health does
not require hospital treatment but entails severe deficits impeding independent life
and thus rendering self-sufficient and autonomous life in their own homes impos-
sible. Persons of this category require full-day care (sometimes called 24-hour care)
to be provided by professional personnel and intensive help and long-term care
services in addition to the continuation of their medical treatment.26 The definition
of long-term care becomes even more important with a view to the fact that the most
important benefits to be granted to persons dependent on care, i.e. benefits in kind,
are guaranteed through the health insurance scheme.
In order to be able to describe the current legal situation of this category of
persons in Poland, it is important to first have established this definition of “persons
dependent on long-term care” or “persons unable to lead an independent life”, as
well as of “long-term care”. The starting point, therefore, is to first determine the
category of persons dependent on long-term care (persons unable to lead an
independent life or, respectively, dependent persons) who require long-lasting
care measures, in order to then be able to determine the scope of benefits to be
granted. It is only then that the main considerations can be brought to bear.
25
Augustyn (2010), p. 9.
26
Augustyn (2010), p. 13.
At this point, a brief terminological explanation is due. In Poland, unlike in

Germany, the health insurance (in the German sense of the term) is distributed
among two pillars. In the case of incapacity for work, in fact, protection is granted
as part of the social insurance scheme.27 The latter is an insurance covering risks
related to illness, pregnancy or motherhood, which may cause a temporary inca-
pacity for work. This part of the social insurance system only guarantees the
payment of cash benefits. Benefits in kind, however, are ensured through the health
insurance.28 The abovementioned distinction is important in that health insurance is
not a branch of the social insurance system. For this reason, a differentiation is
made in this article between social insurance benefits and health benefits, and they
are analysed under separate terms. It must be borne in mind that the benefits in kind
granted through the health insurance are not a part of the social insurance system.
This differentiation is characteristic of the Polish legal system.
2 Health Care Services Provided by the Health Insurance
The most relevant benefits for employed persons are granted through health insur-
ance and the social assistance scheme, both of which provide benefits in kind. The
health insurance, in fact, solely provides this latter kind of benefit, for the simple
reason that persons who are unable to lead an independent life require help in the
form of services rather than in the form of cash benefits in order to be able to satisfy
their needs.
According to the Constitution of the Republic of Poland, the State guarantees its
citizens—irrespective of their material situation—equal access to the health care
system, which is financed from public funds.29 The extent and conditions for
services to be provided are regulated by the Act on Health Care Services. Health
care benefits also include benefits related to long-term care,30 the latter of which can
be provided either in the form of inpatient care or care in the home of the patient.
Pursuant to the Polish National Health Fund (Narodowy Fundusz Zdrowia, herein-
after NFZ), long-term care also comprises services provided by:
• hospital departments for chronic diseases,
• end-of-life homes,
• palliative care wards,
27
Art. 1 Item 3 Act of 13 October 1998 on the Social Insurance System, consolidated text
Dz. U. [Law Gazette] 2009, No. 205, Position 1585 with later amendments.
28
Art. 65 ff. Act of 27 August 2004 on Health Care Services financed from public funds (Ustawa o
świadczeniach opieki zdrowotnej finansowanych ze środków publicznych), consolidated text
Dz. U. [Law Gazette] 2008, No. 164, Position 1027, henceforth referred to as Act on Health
Care Services.
29
Art. 68 Constitution of the Republic of Poland.
30
Art. 15 Para. 2 Item 6 and 11 in connection with Art. 33 Para. 1 Act on Health Care Services.
• care and treatment centres,

• general long-term care facilities,
• daycare centres,
• domiciliary care service providers,
• long-term care nurses and professional long-term care staff.
Also included in this list are the geriatric wards, the rehabilitation wards and
psychiatric wards of hospitals31 which, according to the NFZ, do not form part of
the long-term care system, but whose services are in most cases granted to persons
unable to lead an independent life.
Health care services include services or measures which serve to prevent ill-
nesses or to maintain, preserve, restore or improve a person’s state of health, as well
as other medical measures ensuing from the respective curative treatment or from
specific provisions relating to it.32 The Act has also provided a definition of what is
to be understood as health care benefits in kind, i.e. health products related to the
healing process, medical products (especially orthopaedic devices and other appli-
ances), as well as supplementary services, i.e. accommodation and food provided in
the health care facilities, as well as patient transport services. The health care
services are ensured by providers that carry out the medical activity. Their func-
tioning is regulated through the Act of 15 April 2011 on Medical Activity.33 The
mentioned Act stipulates, among other things, which legal form the providers of
medical activities must be registered under and who may establish it.
Publicly financed long-term care services are not only regulated in the Act on
Health Care Services, but also in other legislative acts, such as the Decree of
30 August 2009 issued by the Health Minister regarding services to be granted in
the field of care within the framework of long-term care,34 and the Decree of
29 August 2009 issued by the Health Minister regarding services to be granted in
the field of end-of-life and palliative care,35 which are of great importance. These
decrees have been issued on grounds of an authorisation pursuant to Art. 31d of Act
on Health Care Services and define the list of services in this field as well as the
conditions pertaining to their implementation.
Long-term care services are granted following a referral by a physician.36 They
are granted to persons who are chronically or severely ill and who, even though
hospitalisation is not required, do need intensive and professional long-term care
and relief care on a 24-hour basis, as well as continued curative treatment. The NFZ
finances the following inpatient and 24-hour services within the framework of long-
term care:
31
32
Art. 5 Act on Health Care Services.
33
Act of 15 April 2011 on Medical Activity.
34
Dz. U. [Law Gazette] No. 140, Pos. 1147 with amendments.
35
Dz. U. [Law Gazette] No. 139, Pos. 1138 with amendments.
36
Art. 33a Para. 1 Act on Health Care Services.
a) 24-hour health care services which comprise the following:

• relief care for and rehabilitation of patients who do not need to be
hospitalised,
• ensured provision of health products and medical products, accommodation
and provision of food in conformity with the patient’s state of health;
• training in health care for patients and their families, as well as preparatory
instructions in order for patients to be able to take care of themselves or,
respectively, for relatives to provide long-term care in the home environ-
ment of the patient.
These services are provided in care and treatment centres,37 with more than one
type of such facilities existing, namely facilities
• for adults, children and adolescents,
• for patients suffering from respiratory insufficiency (and requiring mechanical
respirators),
• for patients with apallic syndrome (persistent vegetative state, PVS).
b) 24-hour health care services which comprise the following:
• long-term care for and rehabilitation of patients who do not need to be
hospitalised;
• ensured provision of products, accommodation and nourishment in confor-
mity with the patient’s state of health and as required for the continuation of
the curative treatment;
• training in health care for patients and their families, as well as preparatory
instructions in order for patients to be able to take care of themselves or,
respectively, for relatives to provide long-term care in the home environment
of the patient.
The services are provided in general long-term care facilities.38
c) health care provision that consists of a variety of care services (health care
services, psychological help and social aid) for patients who are terminally ill, as
well as for families of such patients.
Services of this sort are provided in end-of-life homes.39
d) 24-hour curative treatment and long-term care services for chronically ill
persons.
These services are provided in the departments for chronic diseases.40
37
Art. 9 Para. 1 Item 1 in connection with. Art. 12 Para. 1 Item 1 Act on Medical Activity.
38
39
40
Witkowska (2010), p. 62.
The Decree of 30 August 2009 regulates the exact scope of services to be

provided in care and treatment centres or, respectively, in the general long-term
care facilities, and it states that these services are to be granted to persons who have
scored 40 or fewer points on the Barthel ADL index41 (or Barthel scale). The scope
of services to be granted is assessed by a physician and a nurse—prior to accom-
modation of the patient in the respective care facility and at the end of each month.
Annex 2 of the Decree gives an example of the Barthel index scoring form.
However, patients who have scored 40 or fewer points on the Barthel ADL index
must not be admitted to the care facilities if their detrimental state of health is due to
a tumor, psychological illness or an addiction. In such cases, different benefits and
services are granted in accordance with the provisions of appertaining regulations.
The exact scope of services provided in end-of-life homes (and also in the
palliative care wards of hospitals) have been stipulated in the aforementioned
Decree of 29 August 2009. Pursuant to the Decree, the services offered through
end-of-life and palliative care represent a varied range of care and nursing services
for terminally ill patients. The aim is to prevent pains and other somatic symptoms,
as well as to alleviate and minimise the suffering of patients with a view to their
psychological, mental and social needs.
Besides inpatient long-term care and nursing services the NFZ also finances
services that are provided in the home of the patient. They are delivered by nurses
specialised in long-term care and a variety of variably qualified medical staff
specialised in long-term care.42 Pursuant to the Decree of 30 August 2009, this
refers to the following services:
a) preparatory services of persons dependent on care and of their families in order
for them to be able to manage self-care activities (particularly the patient, who
has to be able to deal with his disability); long-term care services; health care
education to persons dependent on help and to their families; assistance with
resolving the patient’s health problems; assistance with the acquisition of
medical and rehabilitative appliances; other types of nursing care services.
The services are provided by nurses specialised in long-term care and are
granted to persons who have scored 40 or fewer points on the Barthel ADL
index and who fulfil further requirements.43
b) services for persons with respiratory insufficiency who require permanent or
temporary invasive or non-invasive respiratory therapy, but who do not need to
41
The Barthel ADL index is a procedure developed in the USA to assess the activities of daily
living of a patient and serves to determine systematically who is to be defined as capable of living
independently and who is to be considered as dependent on long-term care. A certain amount of
credits is awarded for each part of the “activities of daily living”, with a minimum of 0 credits
(fully dependent on long-term care) and a maximum of 100 credits (full capability of living
independently) possible.
42
43
§ 9 Decree of 30 August 2009.
be hospitalised. These services are provided by caregiving units specialised in

long-term care delivery in the home of the patient.44
Emphasis must be put on the fact that the NFZ only finances the health care
services provided to beneficiaries accommodated in a care and treatment centre or,
respectively, in a general long-term care facility. Food and accommodation must be
paid for individually by each beneficiary accommodated in a care and treatment
centre or, respectively, in a general long-term care facility.45 The monthly charge
has been fixed at 250% of the minimum old age pension rate,46 but it must not
exceed 70% of the monthly income of the beneficiary (in line with the provisions
governing social assistance). If the beneficiary is under 18 years of age, the monthly
charge amounts to 200% of the minimum old age pension rate, but must not exceed
70% of the monthly family income per person (in line with the provisions
governing social assistance). In end-of-life homes, however, all services are free
of charge, i.e. they are financed through the NFZ.
In the past years the number of long-term care facilities operated under the
health insurance system has increased. In 1999 there were 95 care and treatment
centres with 8521 beds, and 20 general long-term care facilities with 861 beds. On
31 December 2008, the number had already risen to 268 care and treatment centres
and 121 general long-term care facilities, with 13,271 and 4463 beds respectively.47
64 end-of-life homes with 964 beds were added to this number in 2008. However, a
notable reduction in hospital departments for chronic diseases has been effected:
there were 134 departments with 2747 beds in 2007, while only 102 departments
with 2317 beds existed in 2008. However, K. Szczerbińska and A. Kozierkiewicz
point out that departments of this sort are to be converted into long-term care
facilities and sanatoriums.48 Another problem is the long waiting times for long-
term care services, a circumstance which significantly limits access to these ser-
vices. According to B. Witkowska, the average waiting period—depending on the
respective voivodeship—is as follows:
a) for a place in a care and treatment centre—between 25 and 259 days;
b) for a place in a general long-term care facility—between 0 and 134 days;
c) for the delivery of nursing services in the home of the patient—between 0 and
64 days;
d) for services provided by long-term caregiving units in the home of the
patient—between 0 and 249 days.49
44
§§ 7, 8 Decree of 30 August 2009.
45
Art. 18 Act on Health Care Services.
46
The lowest old-age pension as of March 2011 amounts to 728.18 PLN.
47
48
49
As to the number of patients, it is worth mentioning that in 2008 there were

32,278 persons who received services in care and treatment centres, 11,710 persons
who received services in general long-term care facilities, and 14,469 who received
services in end-of-life homes.50 In 2007 there were 60,444 persons who resorted to
inpatient long-term care services, and only 7712 who preferred care services to be
provided in their homes.
The expenditure incurred by the NFZ for long-term care purposes amounted to
702,290,880 PLN51 in 2007; to 911,956,070 PLN52 in 2008; and to 888,128,580
PLN53 in 2010.
The Polish Ministry of Health is aware of the tendency for long-term care issues
to gain increasing importance owing to demographic developments, and of the fact
that the current financing structure within the framework of the health insurance
must be improved in order for services to be guaranteed at a consistently high level.
In 2007, the Minister of Health summoned a working group for the elaboration of
the principles of the Long-Term Care Act. The group has elaborated the funda-
mental principles; further measures, however, have not been taken by the Ministry
of Health. On 21 August 2009, the Minister of Health enacted a decree on health
priorities54 which lists long-term care as a priority with the aim of improving the
quality of life of persons dependent on care.
3 Social Assistance
According to the legal definition, the element of social assistance serves as a social
policy provision on the part of the State that aims at securing the livelihood of
persons and families who are experiencing a difficult life situation which they
cannot surmount by means of their own abilities, competencies or assets.55 It is
provided by the agents of self-governance and State administration in cooperation
with churches, social organisations, non-governmental organisations and natural
persons or, respectively, corporate entities. Social assistance is granted particularly
on grounds of disability or permanent or, respectively, serious illness56; this must
lead to the conclusion that social assistance may also be granted to persons unable
50
51
Raport NFZ za 2007 rok (2008), p. 71.
52
53
Roczne sprawozdanie wykonania planu finansowego Narodowego Funduszu Zdrowia za rok
2010, Warsaw 2011, p. 38.
54
Dz. U. [Law Gazette] Number 137, Position 1126.
55
Art. 2 Para. 1 of the Act of 12 March 2004 on Social Assistance (Ustawa o pomocy społecznej),
consolidated text Dz. U. [Law Gazette] 2009, No. 175, Position 1362 with amendments, hence-
forth referred to as Act on Social Assistance.
56
Art. 7 Act on Social Assistance.
to lead an independent life. Contrary to health insurance, which grants benefits in

kind only, social assistance may come in the form of both benefits in kind and cash
benefits. Social assistance in the form of benefits in kind as granted to persons
unable to lead an independent life is regulated in the Polish Act on Social Assis-
tance; the provision of cash benefits is regulated in the Act on Social Assistance as
well as in the Act of 28 November 2003 concerning family benefits57 (henceforth
referred to as Act on Family Benefits) and in the Act of 27 June 2003 on social
pensions58 (henceforth Social Pension Act). The following part shall outline both
benefits in kinds and cash benefits as granted to persons unable to lead an indepen-
dent life in the context of social assistance.
3.1 Benefits in Kind
3.1.1 General and Professionally Provided Long-Term Care Services
General and professionally provided long-term care services which are provided in
the home of entitled beneficiaries59 are, as a rule, granted to single persons who
require assistance from other persons owing to old age, illness or other causes. They
may also be granted to persons who need assistance from others if their families
(as well as a separated spouse, ascendant relatives, or descendants) cannot ensure
such help.
General long-term care services include assistance with the fulfilment of every-
day needs (tidying up, washing, shopping, preparing meals etc.), with hygienic care,
with care services as recommended by the physician, and with the maintenance of
contacts within the social environment of the beneficiary.
Professionally provided long-term care services are services that are provided by
specifically trained personnel. They are designed to fulfil the special needs resulting
from the illness or disability of the beneficiary. The social assistance agencies
decide on the scope and duration of services to be granted, with the exact scope
of professionally provided long-term care services available having been deter-
mined in the Decree of the Minister for Social Policy of 22 September 2005
regarding professional long-term care services.60 It must be noted that the men-
tioned services are not free of charge. The municipal councils decide on the exact
regulations according to which care services are granted, as well as on the principles
governing the obligation to pay fees. Only in exceptional cases where beneficiaries
57
Ustawa o świadczeniach rodzinnych, consolidated text Dz. U. [Law Gazette] 2006,
No. 136, Position 992 with amendments.
58
Ustawa o rencie socjalnej, Dz. U. [Law Gazette] No. 135, Position 1268 with amendments.
59
60
Decree of the Minister for Social Policy of 22 September 2005 on Professionally Provided Long-
Term Care Services, Dz. U. [Law Gazette] No. 189, Position 1598 with amendments.
are experiencing a particularly difficult life situation may services be provided free
of charge or against partial payment.
In 2000, general long-term care services were granted to 86,180 persons, with
municipalities having spent 259,543,223 PLN for this purpose; in 2008, services of
this sort were granted to 92,470 persons, with expenditures amounting to
342,389,099 PLN.61
3.1.2 24-Hour Care Services in Family Assistance Living Groups
Services that are provided in family assistance living groups62 are a form of long-
term care service provided on a 24-hour basis through a natural person or a social
organisation. Services of this type are granted to persons who, for one, require help
for reasons of age or disability, and if, for another, there is no possibility for them to
be provided long-term care services in their place of residence. A family assistance
living group is operated for a minimum of three, and no more than eight persons.
The costs of accommodation in the family assistance living group are to be borne by
the person entitled to a stay there. Until 3 November 2011, the scope and type of
services to be provided by the family assistance living groups, as well as the
conditions for admission and payment, were determined by the Decree of the
Minister for Social Policy of 28 July 2005 regarding family assistance living
groups.63 With the entry into force of the Act of 18 March 2011 amending the
Polish Act on Social Assistance and the Act on Health Care Services, the afore-
mentioned decree was rendered inoperative on 3 November. Even though the
Minister was given 6 Months’ time for the adoption of a new regulation, the new
Decree has been passed on 31 May 2012 (Decree of 31 May 2012 regarding family
assistance living groups, Dz. U. [Law Gazette] Position 719).
3.1.3 Daytime Services in Support Centres
A support centre64 is an institution funded through social assistance where services

are, as a rule, provided during the day only; in exceptional cases 24-hour services
may be allowed for. These centres offer general and professionally provided long-
term care services and meals for persons who, owing to their age, adverse state of
health or disability, need care services (if applicable) and assistance with the
fulfilment of their everyday needs. The objective of these centres is to support the
families of those dependent on help or with disability in order to prevent them from
having to resort to inpatient care. There are several types of centres in operation,
61
Wyrwicka and Łukasik (2010), p. 89.
62
63
Dz. U. [Law Gazette] No. 153, Position 1276 with amendments.
64
Art. 51-51c Act on Social Assistance.
among which are self-help homes, day care homes, homeless shelters, self-help
associations, food assistance centres, homes for mothers. Support centres for
psychologically ill persons have also been established; they are financed from the
State budget and mainly come in the form of self-help centres. In 2008 there were
1493 support centres, providing help to around 94,000 persons.65
A self-help centre is a form of support centre that is increasingly gaining in
importance. In 2000 there were 235 self-help centres catering for 7110 beneficia-
ries. In 2008 this number rose to 627 self-help centres and 19,519 beneficiaries.
During this period the number of day care homes has remained almost unchanged.66
3.1.4 Long-Term Care Homes
Long-term care homes (henceforth referred to as long-term care homes) provide

general services, long-term care service, support and education services, the scope
and way of delivery of which should comply with the needs of the care home
residents. In this context, the residents’ freedom, dignity and intimacy must be
respected and the degree of disability must be considered. (General and profession-
ally provided) long-term care services may also be delivered to persons who do not
live in a long-term care home. The long-term care homes bear the costs incurred for
securing the care provided to their residents, as well as for the fulfilment of their
social needs and necessities of life. The Act on Social Assistance regulates the
issues involved in running long-term care homes.67 Eligibility to care provision in a
respective long-term care home extends to persons who, for reasons of age, illness
or disability, require 24-hour care services, who cannot autonomously manage their
everyday lives and who have no possibility of receiving assistance in the form of
long-term care services. Care provision in a long-term care home requires the
beneficiaries’ consent or that of their legal guardians. Occasionally, the “creation
of a home with long-term care provided as necessary” is mentioned as the objective
of a long-term care home,68 and it is this aspect which distinguishes long-term care
homes from care and treatment centres and general long-term care facilities, whose
objective is rather to prepare patients for their return home. Persons requiring more
extensive medical care are referred to a care and treatment centre or a general long-
term care facility by the administrator of the district authority.69 There are several
types of long-term care homes, depending on which category of persons they are
intended for:
65
66
Wyrwicka and Łukasik (2010), pp. 95–96.
67
Art. 54-56 Act on Social Assistance.
68
69
Art. 54 Para. 3 Act on Social Assistance.
• long-term care homes for the elderly,

• long-term care homes for persons with chronic somatic illness,
• long-term care homes for persons with chronic psychological illness,
• long-term care homes for adults with mental disabilities,
• long-term care homes for children and adolescents with mental disabilities,
• long-term care homes for persons with physical disabilities.
Operation of a long-term care home requires authorisation; the latter is to be
obtained from the competent voivode. This procedure applies to both long-term
care homes—which are to be considered as institutions funded through social
assistance—as well as to commercial businesses, and aims at guaranteeing a
correspondingly high quality of services. The exact functioning of long-term care
homes of any kind, the standard of services to be delivered by the long-term care
homes, the admission procedure to and care provision within a long-term care home
are regulated by the Decree of the Minister for Social Policy of 19 October 2005
regarding long-term care homes run by the Social Welfare Department.70 Admis-
sion to a long-term care home is effected following an administrative act on the part
of the competent municipal authority, in the course of which the charges payable
are also fixed. In 2004, the payment principles were changed. Accordingly, accom-
modation in a long-term care home is liable to a charge, the upper ceiling being the
average monthly maintenance costs71; these costs are fixed by law.72 It is, in the first
place, the residents themselves who pay for their accommodation; however, the
accommodation fee is to amount to no more than 70% of their individual income. In
cases where the resident’s payment does not sufficiently cover the costs, the family
of the former—i.e. the spouse, descendants, or ascendant relatives—are obliged to
contribute, provided that their income has reached a certain statutorily established
level. If the charges paid by the residents or their family members do not suffi-
ciently cover the maintenance costs, the remaining costs are to be borne by the
municipality that has admitted the person in need to the long-term care home. The
overall costs borne by the municipalities for this purpose amounted to 12,666,093
PLN in 2004, to 139,564,711 PLN in 2006, and to 320,124,231 PLN in 2008.73 The
legislator also allows for the possibility of an exemption from contributions for
residents and their families74; in such cases, it is the municipality that bears the
overall costs. These regulations regarding contribution payments and determination
of the payable amount do not apply to private long-term care homes: in this latter
case, a civil law contract is concluded by which the parties involved lay down their
reciprocal rights and obligations.
70
Dz. U. [Law Gazette] No. 127, Position 1837 with amendments.
71
72
73
74
Worth mentioning at this point is the fact that long-term care homes do not
deliver any health care services. Residents of long-term care homes who require
medical care are entitled to health care services in the context of health insurance
schemes (also within the framework of long-term care), to be provided to them to
the same extent as if they were living in their home environment. This is particu-
larly relevant for persons who have been recognised as being incapable of leading
an independent life.
In 2008 there existed, on the whole, 792 long-term care homes, showing a
decrease in number by 28 as compared with 2003.75 In the light of demographic
forecasts the reduction of long-term care homes offers cause for concern.
3.1.5 Commercial Service Provision in Care Facilities
In cases where, in the context of commercial activity, services are provided in

facilities providing inpatient care to persons with disabilities, chronically ill or
elderly persons, such activity may be conducted only upon authorisation. The
voivode examines if the statutory provisions are fulfilled and is also vested with
supervisory powers. The scope of long-term care services to be provided by these
facilities, as well as all other obligations they may have, are laid down in the Polish
Act on Social Assistance.76 The costs for accommodation in a facility of this type
cannot be financed through social assistance; care services in such a facility are
provided on grounds of a contract under civil law.
In 2005 there were 213 facilities of this type, and in 2008 there were already
228 such facilities with places for more than 3629 patients.77
3.2 Cash Benefits
Apart from benefits in kind, cash benefits are also granted through the social
assistance scheme. As mentioned before, this refers to particular benefits as regu-
lated in the Act on Social Assistance, the Act on Family Benefits and the Social
Pension Act. These benefits, too, deserve a brief description.
3.2.1 Benefits Granted for an Unlimited Period of Time
Benefits delivered for an unlimited period of time (zasiłek stały) are granted to
persons of legal age78 whose income does not exceed a certain limit and who are,
75
76
77
Wyrwicka and Łukasik (2010), pp. 112–113.
78
due to their age, unfit for work (i.e. at the age of 60 for women, and 65 for men79) or
who have been attested full incapacity for work. The criterion governing the income
amount depends on whether the person involved lives alone (477 PLN/ approx.
110 EUR), or together with family members (351 PLN/approx. 88 EUR per person
in the family). Benefits granted for an unlimited period of time are granted to the
extent of the calculated difference between the criterion-based income ceiling and
the actual income, and shall not amount to less than 30 PLN. For persons living in a
one-person household, the upper ceiling for benefits granted for an unlimited period
of time has been fixed at 444 PLN (approx. 100 EUR). The expenditure for benefits
granted for an unlimited period of time amounted to 600,000,000 PLN in 2008.
3.2.2 Benefits Granted for a Limited Period of Time
Persons who do not exceed the criterion-based income ceiling are entitled to
benefits granted for a limited period of time (zasiłek okresowy)80; these benefits
are granted particularly on grounds of permanent illness, disability or unemploy-
ment. The benefit amount is calculated in the same way as for benefits granted for
an unlimited period of time. The social assistance agencies decide on the duration
of the benefit payment.
3.2.3 Targeted Benefits
Targeted benefits (zasiłek celowy) may be granted for the purpose of satisfying the
necessities of life of a person dependent on help. These necessities of life include, in
particular, the provision of food, medication, curative treatment, clothing, house-
hold items as required, small maintenance works in the home of the patient,
provision of heating material, funeral services.81
3.2.4 Payment of Social Security Contributions
The possibility exists for social insurance contributions to be paid by the social
assistance agencies on behalf of persons who have interrupted an employment
relationship due to an obligation on their part to provide direct and personal care
to severely or permanently ill family members. The need for personal care provi-
sion must be confirmed by a physician, however no earlier than 14 days before
application for the benefit is made. Persons who may resort to personal care services
include direct family members, as well as mothers, fathers and siblings, even if the
79
Art. 6 Item 7 Act on Social Assistance.
80
81
latter do not live in the applicant’s household. The contribution amount and
duration of payment is precisely defined by law.82 It must be mentioned that this
benefit is not granted directly to persons in need of care, but to family members who
assume the duty of care provision and who, due to this, are forced to interrupt their
gainful employment. Social security contributions are only paid if additional,
statutorily fixed conditions have been met.83 This benefit is not resorted to very
often. In 2008, social insurance contributions were only paid for on behalf of
393 persons, incurring a total cost of 327,008 PLN.84
3.2.5 Long-Term Care Allowance
Long-term care allowance (zasiłek piele˛gnacyjny) is a care service within the

meaning of the Act on Family Benefits.85 Its purpose is to cover part of the costs
arising from the necessity to secure the provision of help and care services through
others on grounds of one’s own inability to lead an independent existence. Eligi-
bility extends to the following categories of persons:
• children with disabilities;
• persons who have reached 16 years of age and who have been attested a severe
disability;
• persons who have reached 75 years of age;
• persons who have reached 16 years of age and who have been attested a
moderately severe disability, given that the disability occurred before the person
turned 21 years of age.
Eligibility is excluded in cases where the person in question fulfils the
abovementioned conditions, but is a resident of an institution that ensures the
provision of inpatient care. Furthermore, no long-term care allowance is granted
to persons who receive a long-term care subsidy.86 The long-term care allowance
amounts to 153 PLN. In 2008, around 771,000 persons received long-term care
allowance, with the overall expenditure amounting to approximately 1,416,000,000
PLN.87
82
83
84
85
Art. 16 Act on Family Benefits.
86
Cf. Part IV Act on Family Benefits—Social Insurance Benefits.
87
3.2.6 Long-Term Care Benefit
As with long-term care allowance, the long-term care benefit (świadczenie

piele˛gnacyjne) is a care benefit within the meaning of the Act on Family Benefits;
the latter also regulates as to who is entitled to the long-term care benefit.88 Persons
entitled to it include:
• the mother or father of the person in need of care;
• other persons who, according to provisions under family law, are liable for
maintenance (unless they themselves are also considered as persons with severe
disabilities);
• the person actually providing the care to the child;
• other persons if none of the above exist or if these persons cannot provide the
care service.
The precondition for receiving the long-term care benefit is for the person
involved to renounce or not take up employment or any other gainful activity in
order to instead provide care to a person in need of care. The next condition is for
the person in need of care to have been diagnosed with a disability. This diagnosis
must attest
• that the person in question is dependent on permanent or long-term care or help
through others, or
• that a continuous cooperation with the carer of the child is necessary with regard
to the curative treatment, rehabilitation or education of the latter, or
• that the person requiring assistance has been diagnosed to be with severe
disability.
Cases that are excepted from eligibility to a care benefit are regulated in detail.89
It must be noted that as per 1 January 2010 the right to care benefits is independent
from any income criteria, a circumstance which has considerably extended the
circle of persons that are factually eligible for benefits. These benefits amount to
520 PLN per month. In 2008, the financing of care services amounted to
336,000,000 PLN. Just as with the payment of social insurance contributions
pursuant to the Act on Social Assistance this benefit is not granted directly to the
person dependent on care, but to those who provide care services to this person.90
3.2.7 Social Pension
Social Pension (renta socjalna) has been regulated in the Social Pension Act.
Persons eligible are those who, due to an impairment of the physiological functions,
88
Art. 17 Para. 1 Act on Family Benefits.
89
Art. 17 Para. 5 Act on Family Benefits.
90
Korcz-Maciejko and Maciejko (2009).
are fully incapacitated for work. The impairment must have occurred either before
the person has turned 18, or during education at school or a tertiary institution
(before the person has reached the age of 25), or during the person’s doctoral
studies. The pension may be granted for a limited or unlimited period, depending
on whether the incapacity for work is of a temporary or permanent nature.91 In order
to assess an incapacity for work, the rules of the Pension Act are applied. For the
determination of the social pension amount, the rules of the Pension Act are
applied, as the social pension amounts to 84% of the minimum pension that is
granted to persons on grounds of full incapacity for work in accordance with the
Pension Act92 (in 2011: 677.11 PLN93). In 2009, expenditures for the social pension
amounted to 1,453,150,500 PLN.94
4 Social Security Benefits
As already explained, the inability to lead an independent life is defined in the

Pension Act.95 Persons unable to lead an independent life are entitled to a long-term
care subsidy (dodatek piele˛gnacyjny) if they meet the conditions laid down in Art.
75, Para. 1 of the Pension Act. The circle of beneficiaries includes persons who are
entitled to an (old-age) pension if they:
1. are recognised as being incapable of leading an independent life or
2. have reached the age of 75.
Art. 75 Para. 4 of the Pension Act excludes the right to a long-term care subsidy
in cases where persons entitled to pension benefits are accommodated in a care and
treatment centre, or in a general long-term care facility, unless they spend more than
2 weeks per month outside the respective institution.
The aim of the long-term care subsidy is to reimburse beneficiaries the higher
costs incurred for long-term care and attendance services. The long-term care
subsidy has been fixed at 186.71 PLN (around 45 EUR) as per 1 March 2011. It
is quite obvious that this long-term care subsidy will not suffice if the beneficiary
has to finance from it any long-term care services or special needs-based furnish-
ings to his or her home. Another problem is the low payment level of the main
benefits. The combination of main benefits and a long-term care subsidy is under-
stood to be insufficient in the event of dependency and, furthermore, does not
guarantee the reimbursement of any costs incurred due to the need for paid
assistance provided through third persons.96
91
Art. 4 Para. 2 Social Pension Act.
92
Art. 6 Para. 1 Social Pension Act.
93
According to Polish Social Insurance Fund, www.zus.pl.
94
Karczewicz and Łabe˛cka (2011), p. 64.
95
Cf. above fn. 13.
96
Wilmowska-Pietruszyńska (2010), p. 47.
The first precondition refers to the beneficiary’s state of health and requires the
medical attestation to confirm both full incapacity for work and the inability to lead
an independent life. In line with the interpretation of Art. 13 Para. 5 of the Pension
Act, the risk of becoming unable to lead an independent life has been established as
separate from the incapacity for work, meaning that in the Polish legal system they
constitute two separate risks.97 However, this separation has not been consistently
implemented in terms of Art. 75 of the Pension Act, as the criterion for receiving the
long-term care subsidy is the combination of full incapacity for work and the
inability to live an independent life. This means that the mere attestation of the
inability to lead an independent life does not suffice to be granted the subsidy. This
circumstance is particularly puzzling to old-age pensioners, as reaching retirement
age is commonly associated with incapacity for work. Any decision establishing
full incapacity for work among pensioners therefore seems to be irrational. The
combination of two risks as a precondition for the entitlement to long-term care
subsidy has been criticised in the literature.98 A separate benefit protects the risk of
becoming unable to lead an independent life. This benefit, however, does not
constitute a benefit of its own. This means that a person becomes eligible for a
long-term care subsidy only once he or she is entitled to the main benefit
(i.e. old-age pension or any other type of pension). It is thus impossible to receive
the long-term care subsidy as an independent benefit of its own. Thus, the risk of
becoming unable to lead an independent life is sometimes defined as a separate risk
that, nevertheless, depends on further criteria for it to become relevant for benefit
entitlements.99 This implies that the discontinuation of the main benefit will also
result in the revocation of the long-term care subsidy. It is worth mentioning,
however, that there are also other opinions that are based on the grammatical
interpretation. Remarkably, the legislator uses the term “persons entitled to
old-age (and other) pensions”. A mere entitlement does not necessarily mean,
however, that the old-age pension (or any other type of pension) is actually paid.
In this reading, the discontinuation of the pension does not result in the revocation
of the long-term care subsidy.100 The jurisdiction in this field is clear, however, and
leaves no doubt about the dependence of the long-term care subsidy on the main
benefit.101
The second precondition does not cause any problems. All persons who have
reached the age of 75 are officially entitled to receive the long-term care subsidy
from the Polish Social Insurance Fund, and this refers to all persons who receive the
main benefit (old-age pension). The beneficiary’s state of health does not play any
role in this regard—what counts is the fact that the person has reached 75 years
of age.
97
Je˛drasik-Jankowska (2009), p. 315.
98
Wypych-Żywicka (2009), p. 16.
99
Je˛drasik-Jankowska (2009), p. 316.
100
Wypych-Żywicka (2009), p. 17.
101
Ciszewska (2004), p. 34.
J. Jończyk emphasises that the comparison of the two preconditions ultimately

establishes the context for the second precondition, which is based on the assump-
tion that all persons aged 75 and older are unable to lead an independent life; this,
however, often does not correspond to the real situation.102 It is very important to
comprehend this, as it makes clear that there are many persons eligible for a long-
term care subsidy who are, however, probably not dependent on help and do not
really require any long-term care or assistance services. A valid question to be
posed here is, therefore, whether the financial means reserved for long-term care
subsidies are spent in an appropriate way. In 2007, there were 2,008,256 persons
who received the long-term care subsidy: 535,884 persons due to full incapacity for
work and the inability to lead an independent life; and 1,472,372 persons due to
having reached 75 years of age103—a figure representing nearly 75%. Unfortu-
nately, no estimates can be made as to the proportion of persons unable to lead an
independent life in the second group. The assumption is, however, that many
persons in this group factually do not meet the criteria defining the inability to
lead an independent life. This means that they receive the long-term care subsidy
even though they do not require any long-term care services. For persons of this
group, the care subsidy rather represents a premium they are entitled to due to their
having reached a particular age. The usefulness of this practice is questionable,
particularly in light of the low level of long-term care subsidy paid to persons who
are indeed unable to live independently.
At this point, brief mention shall be made of the fact that a long-term care
subsidy may also be granted under other laws in the field of social insurance. There
is, to begin with, the Act of 20 December 1990 regarding social insurance for
farmers,104 according to which a long-term care subsidy is granted in addition to the
(old-age) pension for farmers if the criteria related to general (old-age) pension
regulations are met.105 This reference relates to the general social insurance laws,
i.e. the aforementioned Act on Old-Age Pensions and Pensions from the Social
Insurance Fund (Pension Act). The granting of long-term care subsidy has also been
regulated in the Act of 30 October 2003 regarding social insurance in the event of
work accidents and occupational diseases106 (social insurance covering against the
risk of accidents). Much like the aforementioned Act of 20 December 1990
regarding social insurance for farmers, this Act refers to the Pension Act.107
Thus, to be eligible, the person involved must either be unable to lead an indepen-
dent existence, or must have reached 75 years of age.
102
Jończyk (2006), p. 147.
103
Wilmowska-Pietruszyńska (2010), p. 48.
104
Consolidated text Dz. U. [Law Gazette] 2008, No. 50, Pos. 291.
105
Art. 27 Para. 1 Act on Social Insurance for Farmers.
106
Consolidated text Dz. U. [Law Gazette] 2009, No. 167, Pos. 1322.
107
Art. 19 Para. 2 Act on Social Insurance in the event of Work Accidents and Occupational
Diseases.
5 Review
The above regulations, which should guarantee a decent living standard for persons
unable to lead an independent life, have been increasingly criticised during recent
years. Even the short description of the legal situation of persons in need of long-
term care leaves no doubt that the benefits in kind as well as cash benefits provided
by the different institutions at various levels no longer suffice to cover the strictly
vital needs of persons unable to lead an independent life. Some points of criticism
could be brought forward that have been specified by the Parliamentary Group for
Elderly People. Further considerations are especially based on the diagnosis drawn
up by this group108 in the report.
One of the major problems of the Polish legal system in the area of long-term
care is the unclear and imprecise distribution of tasks and—consequently—also of
responsibilities. The most important benefits and services are provided via three
sectors:
• social insurance
• health insurance and
• social assistance
Cash benefits are provided through the social insurance scheme and social
assistance, whereas benefits in kind—which are, or at least should be, of utmost
importance for persons unable to lead an independent life—are provided through
the health insurance scheme and social assistance. The problem of dependence is, to
a certain extent, regulated by a total of eighteen laws (and many provisions).109
That is why the system is not transparent and causes persons in need of long-term
care a number of problems. In light of the lack of coordination on the part of the
legal subjects administering the (public!) funds regarding the various long-term
care benefits and services (i.e. Ministry of Health and National Health Fund, Social
Insurance Fund or Agricultural Social Insurance Fund, self-administration at var-
ious levels) it is very difficult to assess the costs for long-term care in Poland. If we
add to this the problem of definition, i.e. who is to be defined as in need of or
dependent on long-term care, a precise assessment of the public costs for long-term
care seems hardly feasible. Depending on the definition used or on the question as
to what services are considered to be long-term care services, the expenses for long-
term care are estimated at 0.1–0.5% of GDP reference. At large (including long-
term care subsidy granted through social insurance), the annual amount comes up to
108
Worth mentioning in this regard, however, is the fact that this group includes not only the
delegates or, respectively, senators but also the well-established Polish scientists who deal with the
problems arising with a view to the elderly population. That is why the repeatedly quoted book
“Opieka długoterminowa w Polsce. Opis, diagnoza, rekomendacje” edited by M. Augustyn is of
particular significance, as it shows the results of collaborative efforts between politicians and
scientists.
109
Augustyn (2010), p. 156.
approximately 10 billion PLN. Also, the problems regarding the assessment of the
actual expenditure for long-term care make it difficult to say whether the funds are
spent efficiently, a point which may be doubtful, however.
Regarding the benefits in kind, it has been emphasised that a serious problem is
the lack of coordination between the different actors responsible for the benefits.110
This leads to an uneconomic financing of benefits and services, especially in cases
where the beneficiary is granted domiciliary services and may receive both benefits
in kind and cash benefits from all sectors, resulting in a possible benefits overlap.
When benefits and services provision by different sectors coincides, this is gener-
ally a delicate point. An example is, for instance, the provision of services by
professional care staff according to the Polish Act on Social Assistance, and of
domiciliary long-term care according to health insurance regulations. Furthermore,
as a consequence of the distribution of tasks (and responsibilities), the costs for
long-term care are passed on, a situation which occurs at various levels: nobody
wants to bear the costs if they can be borne by another legal subject. Families may,
for instance, place the person in need of long-term care in a long-term care home or
a hospital (so-called vacation stays) to avoid costs, since, in these cases, the costs
are borne by the community or the National Health Fund; the communities try to
pass the long-term care costs on to the government (for instance by accommodating
the person in need of long-term care in a general long-term care facility instead of a
long-term care home). As already mentioned above, the government has passed on
the costs for long-term care to the families and communities by modifying the
method of financing stays in a long-term care home.111 These are only a few
examples illustrating the attempt to avoid the costs for long-term care which,
nevertheless, have to be borne by someone in the end.
Another problem already mentioned is the faulty determination of beneficiaries,
a fact which is particularly striking with respect to long-term care subsidy. As
illustrated above, long-term care subsidy is provided to two groups of persons,
namely:
• all persons entitled to a pension or old-age pension who are adjudged to be
unable to lead an independent life, and
• all persons entitled to old-age pensions who have reached the age of 75.
Almost 75% of all care subsidies are paid by reason of having reached 75 years
of age. It is impossible to determine how many of these persons are, in fact,
dependent on long-term care. Yet, if the care subsidy is granted due to a certain
age, an attestation confirming the inability to lead an independent life is no longer
needed. According to estimates, only one person in six of those receiving long-term
care subsidy is in fact dependent on help. These estimates clearly show that the
funds for long-term care are not used efficiently. The amount of the subsidy is
small.112 In 2007, the Social Insurance Fund paid 5 billion PLN for the coverage of
110
Błe˛dowski (2010), p. 139.
111
Augustyn (2010), p. 158.
112
186.71 PLN per month in 2011—approx. 40 EUR.
the long-term care subsidy.113 It is worth considering whether this amount could be
used more efficiently. The amount of the subsidy does not even cover the costs for
the most vital needs of those dependent on long-term care. The help they need most
is in the form of services (personal hygiene, feeding, tidying up, food shopping,
etc.). According to the social assistance agencies, 1 h of such services costs about
12 PLN.114 Hence it is easy to calculate that the care subsidy reimburses about 16 h
of this kind of assistance, i.e. approximately 30 min a day. In this context, one
should not forget that the main benefits are also small: In 2010, the average old-age
pension amounted to 1588.95 PLN with about 42% of old-age pension beneficiaries
receiving an amount of between 600 and 1400 PLN.115 According to the Polish
Statistical Office, the average income available in the households of old-age
pensioners was only about 1200 PLN per person in 2010.116 This clearly shows
that most old-age pensioners (and similarly also other pensioners) cannot afford the
necessary care or assistance. It would undoubtedly be much better if the overall
quota determined annually for care subsidies was only granted to persons unable to
lead an independent life (i.e. to persons who are de facto in need of long-term care)
as this would significantly increase the amount of the individual benefit and
guarantee a better coverage of needs.
The next issue regards benefit structures. M. Augustyn estimates that in 2008
about 120,000 persons received benefits for domiciliary long-term care and about
253,000 persons for inpatient or semi-inpatient care.117 In this context, we must be
aware of the fact that inpatient and semi-inpatient social care services are usually
much more expensive than domiciliary care services. That means that, in 2008,
approximately 66% of all long-term care services belonged to the more expensive
services, and it shows that the resources available for long-term care could probably
be used in a much better way, since more domiciliary services could be provided for
the same amount of money. That is why the service structure of long-term care
requires a reorganisation. Also with a view to the well-being of the beneficiaries, it
is important that they remain in their personal environment for as long as possible.
The answer could be nursing and long-term care being provided by family carers.
The legislator is well aware of the fact that this would be a very good solution, but
the benefits granted to the caring family members—who would renounce employ-
ment—are much too small.
A further problem is the provision of benefits, and especially of benefits in kind.
As already mentioned, almost two thirds of the benefits in kind refer to inpatient and
semi-inpatient social services. However, this does not mean that the beneficiaries
113
Błe˛dowski (2010), p. 150.
114
Augustyn (2010), p. 157.
115
According to data offered by the Social Insurance Fund, available at http://www.zus.pl/files/Wa
%C5%BCniejsze%202010.pdf, pp. 36–37.
116
Available at http://www.stat.gov.pl/cps/rde/xbcr/gus/PUBL_wz_sytuacja_gosp_dom_2010.
pdf, p. 3.
117
Augustyn (2010), p. 154.
absolutely need those services. The high percentage of those services in comparison
to domiciliary services is rather due to the fact that the scope of domiciliary services
does not correspond to the actual needs. The only such service granted by health
insurance is domiciliary long-term care. This kind of care service is, however, not
granted to many beneficiaries, with the waiting period being rather long; in 2007,
the waiting period was about 1 month until a person was offered a place in a care
and treatment centre. The waiting period to be placed in a general long-term care
facility was about two and a half months.118 There is also a waiting list for long-
term care homes. According to Z. Szweda-Lewandowska, the average waiting
period for these homes is 3 years119!
In summary, it can be said that long-term care is not appropriately structured in
the Republic of Poland. The needs of persons unable to lead an independent life are
not sufficiently covered. Cash benefits are much too small and are also attributed to
persons who are not dependent on care. Benefits in kind are hardly available and are
improperly structured, as the more expensive inpatient services are given prefer-
ence over the less costly domiciliary services. This is a result of the lack of
coordination between the different sectors that are to ensure long-term care. All
these remarks lead to the conclusion that the funds for long-term care are spent
inefficiently. It must be pointed out that the current system of support to persons in
need of long-term care is becoming more and more expensive and that, even in the
case of optimistic demographic developments, it is unavoidable that the costs for
long-term care will rapidly increase during the next few years, a fact which will
result in a serious problem for the public finances. That is why it has been
acknowledged that the system of long-term care must undergo fundamental
reforms. What is, however, still more important is to ensure a life in dignity for
the elderly (and all other persons dependent on long-term care, of course) and
provide benefits and services at an appropriate level. For some years now, politi-
cians and academics have been working on the principles of reform and have put
forward several solutions, of which the introduction of a social insurance for
persons unable to lead an independent life (long-term care insurance) is of the
utmost importance. The solutions proposed will be discussed in the following.
6 Project
As pointed out above, the Polish system of support regarding persons dependent on
long-term care must be subjected to fundamental reforms. In the light of demo-
graphic developments this will be inevitable, and failure to implement reforms
118
According to the State Advisers in the field of long-term care for the chronically ill and persons
with disabilities, available at http://www.mz.gov.pl/wwwmz/index?mr¼m7&ms¼603&ml¼pl&
mi¼603&mx¼0&mt¼&my¼602&ma¼10061.
119
Szweda-Lewandowska (2009), p. 17.
could result in the fact that the needs of persons unable to lead an independent life
are met on an ever smaller scale, with costs growing at the same time. The
consequence might be serious social, political and ethical problems.
There are several possibilities of reforming the long-term care system in the
Republic of Poland. Each sector has already now some solutions at hand for the
future, however without allowing for coordination between the sectors. Seeing that
lack of coordination is one of the major problems in the area of long-term care, this
cannot be regarded as a favourable solution. Another possibility would be a reform
based on health insurance or social assistance, and the introduction of a voluntary
long-term care insurance. A further solution would be the introduction of a com-
pulsory long-term care insurance—and this is considered to be the best solution.120
Long-term care insurance was to be introduced in two stages, as described below.
This description is based on the aforementioned study of Senator Mieczysław
Augustyn, who chairs the Senate Committee for Family Affairs and Social Policy
as well as the Parliamentary Group for the Elderly, and who participated in the
preliminary work on a draft law on social insurance in connection with the risk of
dependence on long-term care.
By 2011/2012, the budget finance system was to be established in a first step,
with its functioning being regulated by the Act on Support for Persons Unable to
Live Independently.121 The Act will ensure the coverage of the most vital needs of
persons dependent on long-term care. It will determine the criteria for persons to be
provided long-term care services, the organisation and the financing of long-term
care as well as the service standard. Dependence shall be defined as a separate
criterion for the precondition to be provided long-term care. Moreover, dependence
levels shall be graduated—with certain long-term care services being granted at
each of the different levels. The Act shall also lead to the consolidation of the
previous tasks of long-term care in different systems. A further objective is the
creation of a uniform system for the determination of long-term care dependence,
its level and the benefits to be granted in the respective case. What is especially
important is that the Act is to contain a list of benefits (particularly benefits in kind)
and that the differentiation of these benefits is to be conditional on the level of
dependence only. The minimum standard as well as the quality assessment of the
benefits is to be regulated by law, too. In order to ensure that the funds are in fact
used for long-term care services, persons unable to lead an independent life shall be
issued a voucher which allows them to pay for certain services provided by a
provider of their choice. The maximum amount of the value of the voucher
would solely be conditional on the level of dependence. In this context, the service
providers will have to have acquired a business licence from the competent
authorities in order to be allowed to run a business in the field of long-term care.
The system introduced by the Act on Support for Persons Unable to Live
120
Augustyn (2010), p. 165; Kozierkiewicz and Szczerbińska (2007), p. 47; Wilmowska-
Pietruszyńska and Putz (2009), pp. 264–267; Błe˛dowski (2008), p. 71.
121
Augustyn (2010), p. 166.
Independently would base on existing institutions in order to avoid the costs

necessary for the creation of new structures. The financial resources are to be
secured by consolidating the current expenses in the systems of social assistance
and social insurance, with appropriate changes having to be addressed in these
systems. Instead of the small care subsidy, which every person aged 75 years and
older is entitled to, care benefits would be provided in the form of the above-
mentioned voucher—however, only to those persons who have officially been
acknowledged to be dependent on long-term care. Thus, larger benefit amounts
could be paid out, because they would only be granted to those who actually depend
on long-term care. Persons who are already receiving a care subsidy would, of
course, retain the right to do so for protection of the status quo, unless they are
granted other benefits in the field of long-term care. Also the Act on Family Benefits
would require an appropriate amendment. Financing would fall under the respon-
sibility of the voivodeships, which would especially pay for the vouchers (once the
provision of benefits has been confirmed).
As already pointed out, dependence according to the Act on Support for Persons
Unable to Live Independently shall be classified into three levels depending on the
care level. The qualification criteria for each of the levels must be precisely defined
by the Act or a provision in order to allow for the needs to be assessed as objectively
as possible. Long-term care services will be provided to persons unable to lead an
independent life who, due to the loss of physical, psychological or mental auton-
omy, rely on the assistance, help or care of other persons to cope with the activities
of daily living for more than 6 months. Services provided by informal (especially
family) carers would be given priority and would comprise:
• payment of social insurance and health insurance contributions,
• reimbursement of documented expenses for care (provision of care products,
care and rehabilitation equipment, etc.),
• reimbursement of costs for respite care,
• reimbursement of costs for particular training seminars for caregivers.
The sum which an informal carer could receive is, however, not to exceed the
value of the voucher granted upon evidence of the acknowledged level of depen-
dence. If long-term care cannot be provided by an informal carer, the person unable
to lead an independent life could again be granted certain benefits in kind up to the
amount of the value of the voucher, e.g.:
• domiciliary care or assistance (such as tidying up, washing, food shopping,
preparing meals, helping with moving around),
• accommodation in a facility where the services are provided during the day,
• inpatient accommodation in a long-term care facility.
The extent of the benefits to be granted would be stated in the medical report
regarding long-term care dependence, with the dependent person choosing the
services he or she would like to receive. The quality of the services would be
regularly subjected to control by the staff members of the social assistance
agencies.
As a result of the Act on Support for Persons Unable to Live Independently, a

uniform system would be established which would allow long-term care benefits to
be provided to persons who are actually dependent on long-term care. The foun-
dations would be laid for the creation of a competitive market in which the
beneficiaries could choose the services necessary, which would likely also increase
the quality of the latter. One must not underestimate the fact that the market for
long-term care services could also secure various jobs. For persons dependent on
long-term care, it would be especially important that the benefits they are entitled to
are provided at a higher level, which would serve the satisfaction of needs in a
better way.
The second step would be based on the introduction of a long-term care
insurance in the framework of the social insurance system after 2020. Because of
the rapid demographic change, it will be impossible to guarantee that every person
dependent on long-term care will be granted care services at an appropriate level if
the latter are only financed through public funds. The new pillar of the social
insurance system would base on:
• social solidarity,
• self-financing,
• the right of the insured to choose the provider and the type of services,
• subsidiarity,
• equal treatment of all insured persons.
The obligation to insure should be the same as with health insurance. The
contribution rate would be determined by an actuary, taking into account the fact
that the budgetary funds so far used to finance long-term care are to be transferred
into the long-term care insurance fund. With respect to the determination and
collection of contributions, the provisions contained in the Act on Health Care
Services should be applied. The long-term care insurance fund will finance the
benefits and services at a basic level, since it would be impossible for the fund to
finance the total long-term care costs of the dependent person. Especially expensive
inpatient care would oblige persons dependent on long-term care or their families to
contribute to the costs (to a certain extent). The costs would, however, be lower than
they are at the moment, since part of them would be covered by the fund. Eligibility
for benefits and services will follow principles similar to those laid down in the Act
on Support for Persons Unable to Live Independently.
After the Act on Support for Persons Unable to Live Independently having been
in effect for some years, the functioning of the new system would have to be
examined and, with the introduction of long-term care insurance, the necessary
changes would have to be made. Also the number of long-term care dependence
levels will be determined, as well as the extent of benefits granted at each level.
Another point worth considering is whether the family members of an insured
person who are not subjected to the obligation to insure might be entitled to benefits
as well. This entitlement would only become valid after 60 months of contributions.
The list of benefits and services would be similar to the one established under the
Act on Support for Persons Unable to Live Independently, but would probably be
more exhaustive due to the medical progress. Also with respect to long-term care
insurance a market would be created as, depending on the care dependence level,
persons unable to lead an independent life would receive a voucher up to a certain
amount in order to be able to decide themselves which services they would like to
receive from which provider. Moreover, the long-term care insurance fund would
cover the training costs for family members.
The introduction of long-term care insurance into the Polish legal system should
serve the best possible satisfaction of needs of persons dependent on long-term care.
Moreover, the use of private funds would help to make the system independent
from political decisions. The budget would be partly exempted from the high
expenditures in the field of long-term care, which, in the case of a lack of reform,
will rapidly increase in the next few years. In addition, the health insurance system
would have to provide long-term care services to a much lesser extent if most of the
long-term care services were financed by the long-term care insurance fund.
In this context, it must be pointed out, that the Project of the Act on Supports for
Persons Unable to Live Independently was prepared in May 2013. Unfortunately,
further work on the project has been ceased.
7 Summary
The legal situation of persons in need of long-term care (dependent persons,

i.e. those unable to lead an independent life) is not easy in Poland. Even though
various benefits are granted (cash benefits as well as benefits in kind), the applicable
regulations are complicated and non-transparent. The benefits are provided via
several systems, i.e. via health insurance, social assistance and social insurance,
yet with cooperation lacking between the different actors who are responsible for
long-term care benefits in each of the systems. Most of the funds are spent on cash
benefits although it is clear that persons unable to lead an independent life rather
need support in the form of services. The structure of the benefits in kind is also
often inadequate, as most of them are attributable to expensive inpatient care.
Benefits in kind are difficult to access; there are voivodeships where the waiting
period for accommodation in a care and treatment centre is 8 months. In some
municipalities, the waiting period for accommodation in a long-term care home is
about 3 years. It must therefore be concluded that persons who actually depend on
long-term care are not always provided support. Another problem is the use of the
funds that are due to persons dependent on long-term care. As mentioned above,
care subsidy is provided to all persons who have accomplished 75 years of age,
irrespective of whether they are to be regarded as dependent on long-term care or
not. The relevant subsidy is, however, so small that financing the strictly vital needs
is hardly possible. If the pension level is low, elderly persons dependent on long-
term care cannot afford the support they need. If, in addition, we consider the
demographic forecast according to which society will be rapidly ageing in Poland
during the next few years, it becomes clear that the current system must be
subjected to fundamental reform, in order to provide the ever increasing group of

elderly persons with appropriate, high-level long-term care and support. In other
words, it must be ensured that the elderly can lead a life in dignity. That is why the
necessary measures must be taken right now. It is to be pointed out that a reform of
the long-term care system is of great social significance and should therefore be the
subject of an extensive social debate. In this context, the proposals for reform
described above can be regarded as a good starting point for the discussion. One
must, however, also be aware of the fact that the introduction of a new pillar of
social insurance burdening the insured with further contributions could be a cause
for further concern. And one should not forget that the system of old-age pensions
in Poland is in crisis due to the demopgraphic changes. It causes the lack of trust to
the whole social insurance system. This is also why introducing social long-term
care insurance requires a debate that makes society understand the urgent need for
this measure.
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mendacje działań
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Warsaw
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systemowych potrzeb osób niezdolnych do samodzielnej egzystencji, Poste˛py nauk medycznych
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Warsaw 2009
Wyrwicka K, Łukasik J (2010) In: Augustyn M (ed) Opieka długoterminowa w Polsce. Warsaw
Legal Aspects of Long-Term Care
in Slovenia
Grega Strban
Contents
1 Introductory Remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 416
1.1 Historical Arguments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 416
1.2 Aging of the Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 417
1.3 Proposals for the New Long-Term Care Insurance Scheme . . . . . . . . . . . . . . . . . . . . . . . . . 419
1.4 Long-Term Care as a New Social Risk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 420
1.5 Structure of the Present Paper . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421
2 Overview of Long-Term Care Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421
2.1 Current Legal Situation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421
2.1.1 Long-Term Cash Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 421
2.1.2 Long-Term Benefits in Kind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 425
2.2 Legislative Proposals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 431
3 Defining Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 432
3.1 Social Risk Definition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 432
3.1.1 Defining the Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 433
3.1.2 Characteristics of Reliance on Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 434
3.1.3 Long-term Cash Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 436
3.1.4 Long-term Cash Benefits in Kind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 438
3.2 Proposed New Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 439
3.3 Delimitation from Other Social Risks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 440
3.3.1 Delimitation from Occupational Disease or Injury . . . . . . . . . . . . . . . . . . . . . . . . . . 440
3.3.2 Delimitation from Sickness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 442
3.3.3 Delimitation from Invalidity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 444
3.3.4 Delimitation from Old Age . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 445
3.3.5 Delimitation from Having a Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 446
3.3.6 Delimitation from Assistance to Children in Schooling . . . . . . . . . . . . . . . . . . . . . 446
4 Provision of Long-Term Care Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 448
4.1 Organisation and Financing of Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 448
4.1.1 Organisation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 448
4.1.2 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 450
4.2 Freedom of the Beneficiary to Choose the Most Suitable Long-Term Care
Arrangement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 451
4.3 Cooperation Between a Beneficiary and Long-Term Care Providers . . . . . . . . . . . . . . . 453
G. Strban (*)
Faculty of Law, University of Ljubljana, Ljubljana, Slovenia
e-mail: grega.strban@pf.uni-lj.si

https://doi.org/10.1007/978-3-319-70081-6_11
416 G. Strban
4.4 Inclusion of Family Members and Quality Control Mechanisms . . . . . . . . . . . . . . . . . . . 454

4.4.1 Priority of Professional or Informal Care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 454
4.4.2 Mechanisms to Improve the Quality of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 456
4.4.3 Reliance on Long-Term Care: Double Social Risk? . . . . . . . . . . . . . . . . . . . . . . . . . 457
5 Concluding Thoughts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 458
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 458
1 Introductory Remarks
The importance of long-term care is growing, especially in societies which are

getting older. Also in Slovenia, it has been recognised that there is a need for
organising long-term care insurance and introducing mechanisms to ensure a good
quality of long-term care provision as well as proper protection of informal
caregivers. In the present paper the legal aspects of the existing long-term care
arrangements and new legislative initiatives in Slovenia are being analysed.
1.1 Historical Arguments
Social security has a long tradition in the territory of Slovenia. In archaic societies,
it was foremost the (extended, mainly rural) family which was able to provide
protection to its members against certain risks like sickness, invalidity or old age,
and any related reduction in or lack of the ability to autonomously perform all
activities of daily living would materialise. The period before industrialisation was
characterised by mutual societies and fraternities, first among which was the
Fraternity of Slovenians of Saint Jerome (St. Hieronymus), established in as early
as 1452 in Videm.1
First public schemes, established by the State, were introduced in the form of
social insurances, no long after they were announced (1881) and introduced (from
1883 onwards) in Germany.2 The first one was insurance for accidents at work and
occupational diseases (1887), followed by the mandatory health insurance for
workers (1888), pension and invalidity insurance (1906). Unemployment insurance
was introduced a bit later (1937)3 and the last one was parental care insurance
adopted in 2001. Already before social insurances, the local communities provided
assistance to its inhabitants in the form of financial assistance and social services.4
1
For a membership fee it offered security in illness, disease and marriage. Pavliha and Simoniti
(2007), p. 42.
2
Eichenhofer (2010), p. 20; Zacher (2011), p. 30.
3
Bubnov Škoberne and Strban (2010), p. 100.
4
Strban (2010), p. 100.
Legal Aspects of Long-Term Care in Slovenia 417
When the first modern social insurances were introduced in the territory of
Slovenia there was hardly any discussion on also introducing long-term care
insurance. The reasons are manifold. The need for long-term care was not perceived
as a general social phenomenon. Also, the medicine of that time enabled people to
live longer only in few cases of more complicated (inborn) diseases, injuries and
irregularities of the functioning of a human body, for which the requirement of
long-term care existed. Life expectancy was much lower than it is today and (long-
term) care could be provided within larger families.5
1.2 Aging of the Population
Slovenia is no exception in an overall European trend of the population getting

older. Increased life expectancy (at birth) in developed countries (including Slove-
nia)6 means that we live longer, which is not necessarily negative. It is a reflection
of welfare and quality of life, which should be maintained at a highest attainable
level also when we become reliant on care in old age. It is reassuring to know that
we live longer and the life expectancy of persons aged 65 or more is increasing,7
also due to medical advancement, better education, healthier lifestyles and rising
living standards. However, longer lives and more risky lifestyles (with a growing
possibility of serious injuries or diseases) may bereave an individual person of the
capacity to autonomously meet the requirements of daily living. At the same time,
fertility rates are rather low also in Slovenia.8 Although it is impossible to predict
the future with legal tools,9 the aging of the population is a long-term trend that is
5
Strban (2012c), p. 211. It seems that a similar situation existed in Germany. In 1885, only
voluntary insurance for long-term care for the mentally sick was introduced. Gitter and Oberender
(1986), p. 16.
6
Boys born in 2016 could expect (under unchanged circumstances) to live almost 78 years (approx.
9 years more than boys born in 1990) and girls almost 84 years of age (approx. 6 years more than
those born in 1990). These figures show that the life expectancy for men is at that for women
slightly above the EU-28 average. Statistical Office of the Republic of Slovenia (2012), p. 79,
Vrabič Kek (2012), p. 28, www.stat.si, October 2017.
7
Men at 65 years of age could, in 2010, expect to live (on average) for at least another app. 17 years
and women for at least another app. 21 years, with slight increase up to 2016. Vrabič Kek
(2012), p. 28, www.stat.si, October 2017.
8
The fertility rate (as the average number of children per women in certain age brackets) in
Slovenia was 1.26 in 2005 and had slightly increased to 1.57 by 2010, but decreased again in 2011
(1.56, and remained stable up to today, i.e. at 1.58 in 2016). Statistical Office of the Republic of
Slovenia, 2012, p. 80, www.stat.si, October 2017. It was below the EU average. To maintain the
population level (not counting migration flows) it should be at least 2.1 or 2.2 (due to the unequal
number of births of boys and girls). European Commission (2010), p. 28.
9
This is emphasised also by the Slovenian Constitutional Court, e.g. in Decision U-II-1/11,
10 March 2011, SI:USRS:2011:U.II.1.11, Official Journal RS, No. 20/2011.
418 G. Strban
expected to continue,10 and thus the number of persons requiring long-term care is
growing.11 At the same time, it can be expected that there will a lack of young
persons to perform activities of long-term care in the future.12
It is likely that there will be no family- or household members available to
deliver such care. The traditional family structure of two or even three generations
living together is not common anymore. As the population ages, more people live in
smaller households, increasingly consisting of single persons.13 This is especially
the case with elderly women living alone. Among them nearly every second women
has disposable income below the national at-risk-of-poverty line.14 Non-marital
relationships, lone parenting, childless (married) couples, and same-sex partner-
ships have become more widely accepted. In Slovenia, for instance, registered
same-sex partners have just recently acquired the right to a widow/er’s pension15
and a discussion has been initiated regarding the rights of cohabitating
(non-registered) same-sex partners, whose situation has been equalised with het-
erosexual cohabiting partners in 2016.16
Also the participation of women (who for the most part not only receive, but also
perform long-term care activities) in the labour market is traditionally high in
Slovenia.17 In addition, the mobility within the EU and activation (also outside of
the place or state of residence) of social security benefit recipients in the so-called
work-first welfare state18 is promoted.
10
According to population projections, the share of persons aged 65 or more is projected to
increase from 17.4 to 30% (in 2060) in the EU. European Commission (2010), p. 65.
11
In Slovenia the number of dependent persons receiving long-term care benefits (in institutional
care and at home, for old-aged and disabled recipients) rose by 7.5% within a couple of years only
(from 23.411 in 2006 to 25.130 in 2008). Preparatory legislative material for a Long-term Care and
Long-term Care Insurance Act in Slovenia, March 2010.
12
The natural increase in Slovenia was negative in the years 2000 ( 0.2) and 2005 ( 0.3); it was
positive from 2006 onwards (0.4) with its peak in 2010 (1.8) and a slight reduction in 2011 (1.6).
Statistical Office of the Republic of Slovenia (2012), p. 78. Natural increase remained positive also
in the following years (e.g. 0,3 in 2016), www.stat.si, October 2017.
13
The average family and household size has been declining since the 1960s. European Commis-
sion (2010), p. 72.
14
Resolution on the National Social Assistance Program 2013–2020 (Point 2), Official Journal RS,
No. 39/2013.
15
Article 7 of the new Pension and Invalidity Insurance Act (ZPIZ-2) applicable since 2013.
16
The Slovenian Constitutional Court recognised the rights of cohabiting same-sex partners in the
law of inheritance (Decision U-I-212/10, 14 March 2013, SI:USRS:2013:U.I.212.10, Official
Journal RS, No. 31/2013). See also the Civil Union Act from 2016 (Zakon o partnerski zvezi,
Official Journal RS, No. 33/2016).
17
Above 50% in 2011. Statistical Office of the Republic of Slovenia (2012), p. 231. In the
following years (up to 2016) participation of women was slightly below 50%, www.stat.si,
October 2017.
18
Stendahl et al. (2008), Eichhorst et al. (2008).
1.3 Proposals for the New Long-Term Care Insurance

Scheme
When preparing the new long-term care legislation, the question arose as to who
should be responsible for guaranteeing long-term care benefits. There were some
initiatives to define it as the responsibility of legal subjects governed by private law,
like the dependent person him /herself (by means of his/her savings or possible
private insurance).19 The other possibility was to define it as a social risk and hence
as the responsibility of legal persons governed by public law, i.e. the State, regional
or local communities and other public law governed bodies.
It has already been established that the Slovenian social security system has a
long tradition in the beginning part of the legal legacy of continental Europe,20
where social insurances present the main path of providing the right to social
security.21 This is reflected also in the Slovenian Constitution.22 It obliges the
State to regulate mandatory health, pension, invalidity and other types of social
insurance, and to ensure their proper functioning. The enumeration of social
insurance branches is not exhaustive and there is an open possibility to introduce
additional ones. Among them are unemployment23 and parental care insurances.
The same could apply to long-term care insurance, which has been anticipated for
many years already,24 but has not been introduced yet. It is argued that only (and
predominantly) social insurance (not prevailing private insurance, national protec-
tion schemes, special social assistance or special tax benefits) could be in harmony
with the Slovenian legal tradition.25
This would be the case if the conditions of having defined long-term care as a
social risk were met. It could be argued that for certain occurrences in the lives of
people that are rare or even isolated, the State is under no obligation to organise a
social protection system. At the same time, it can be assumed that (due to its limited
scope) private insurance is not arranged for either. It is when such occurrences are
numerous enough, but still do not present a general risk to life, that the attention of
private insurances might be gained. But when they occur often enough and at a
certain (predictable) regularity they become general risks to life, which may
influence the existence and further development of an individual and society as
19
E.g., Zgrablić (2007) argued for mandatory private long-term care insurance.
20
On typology of legal systems David and Grasmann (1998–1999).
21
On the structure of the Slovenian social security system Strban (2010/11), p. 363.
22
Article 50 (The right to social security) of the Constitution, Official Journal RS, 33-I/1991, last
amendment 75/2016.
23
Confirmed also by the Slovenian Constitutional Court, e.g. in case U-I-159/07, 10 June 2010, SI:
USRS:2010:U.I.159.07, Official Journal RS, No. 51/2010. See also Becker et al. (2010), p. 404.
24
The first legislative proposal was introduced by the Ministry of Health in 2006 and the second
one by the Ministry of Labour, Family, Social Affairs and Equal Opportunities in 2010. New
proposal was offered to public discussion by the Ministry of Health on 20 October 2017.
25
Strban (2012c), p. 212.
420 G. Strban
such. Then, social protection, in the form of social insurances, and possibly
complemented with other public (social assistance and social compensation) sys-
tems has to be organised.26
1.4 Long-Term Care as a New Social Risk
The question might be whether long-term care is to be considered a new social risk.
Criteria for defining it as such could be found in international standards, legally
binding for Slovenia, as compared to the social security systems of other, similarly
organised states, and foremost in the modified relations within society, which are
causing imbalances in the social security system.27 It could be argued that people
have, already in the past, lost their autonomy to perform activities of daily living
and that not everything that evolved with regard to social security systems in the
last 65 years, i.e. since ILO Convention No. 102 on social security minimum
standards28 was passed, could be qualified as new.
Although long-term care might be related to certain (traditional) social risks, like
having a family (in cases where children with difficulties in their development
require long-term care), serious injury or persisting sickness, invalidity, accidents at
work, occupational diseases or old age, it should be qualified maybe not as a new,
but certainly as an independent social risk. What has changed is the rising number
of persons who require assistance with the basic activities of daily living. We also
have more detailed information on the number of dependent persons,29 the kind and
level of dependency, and the care facilities developed in the last decades. It has also
become self-evident that disabled and old persons represent an equal part of our
modern society and could not simply be locked away in their homes or in residential
facilities.30 Tackling long-term care under the traditional categories of social risks
will inevitably lead to partial solutions only, which in turn will impose an undue
burden on the traditional social security schemes and render impossible any com-
prehensive social policy to address the phenomenon of reliance on long-term
care.31
A clear definition of the risk of reliance on long-term care should increase
awareness and show the similar features of distinctive long-term care benefits
provided for in distinctive parts of the Slovenian social security system. It is the
26
Strban (2012c), p. 213.
27
More on the criteria as well as international and European legal instruments binding Slovenia
ibid., p. 221.
28
Bubnov Škoberne A in: Novak et al. (2006), p. 381.
29
Introduction to the Proposal of the Long-term Care and Long-term Care Insurance Act by the
Ministry of Labour, Family, Social Affairs ad Equal Opportunities, 12 March 2010.
30
Strban (2012a), p. 249, Pieters (2006), p. 94.
31
Pieters (2006), p. 95.
rule-of-law argument, a cornerstone of every modern society that demands the

legislator to follow and regulate the ever-changing social relations by means of
normative action.32 This especially holds for social security law, one of the most
rapidly changing areas of law.
1.5 Structure of the Present Paper
In the present paper an overview of the various long-term care benefits is presented
and the long-term care benefits are analysed more closely. The characteristics
marking the reliance on long-term care are explored, both in relation and in
distinction to other social risks.
Special attention is given to the delivery of long-term care benefits, especially
with regard to the beneficiaries’ freedom to choose the most suitable care, and their
cooperation with long-term care providers. Particular attention is paid to informal
caregivers, who predominantly tend to be family members of beneficiaries, and to
the endeavours to ensure the highest attainable quality of care. The results of the
analysis are highlighted in the concluding thoughts.
2 Overview of Long-Term Care Benefits
2.1 Current Legal Situation
The law of social security has not been codified in the Slovenian legal order,
although some proposals have been made in this direction.33 At the same time, no
uniform long-term care scheme has been introduced yet. Long-term care benefits
may be found not only in various parts of the social security system, but also outside
of it. They may come in the form of cash benefits or benefits in kind or a
combination of both.
2.1.1 Long-Term Cash Benefits
Long-term care benefits within the social security system are redirected from social
insurance to social assistance and family benefits schemes. Care services (benefits
in kind) are also provided within the network of social services.
32
For instance Decision of the Slovenian Constitutional Court No. U-I-69/03, 20. 10. 2005, SI:
USRS:2005:U.I.69.03, OdlUS XIV, 75.
33
Bubnov Škoberne and Strban (2010), p. 50, 178. Conversely, some other legal fields are codified,
like the law of obligations or criminal law or recently also family law.
422 G. Strban
More specifically, according to the new pension and invalidity insurance scheme
regulated by the ZPIZ-2,34 pensioners have retained the right to an assistance and
attendance allowance (dodatek za pomoč in postrežbo). It is a cash supplement,
granted to any recipient of a pension (either old-age, early, invalidity, widow/
widower’s or family pension) whose independence has been reduced to such a
degree that it makes him/her unable to perform all or at least the majority of basic
activities of daily living.35 It may also be granted to active (employed or self-
employed) insured persons who are blind, visually impaired (group 2 of the
definition of blindness) or immobile (with mobility reduced by at least 70%).36
There are three levels in the context of assistance and attendance allowance. If
long-term care is required to meet the entirety of basic vital needs (also for blind
and immobile persons) the allowance amounts to 53% of the minimum pension
calculation base.37 On the one hand, this amount can be halved if care is required to
satisfy the majority but not all basic vital needs (also for the visually impaired). On
the other hand, it is increased to 76% of the minimum pension calculation base38 if a
pensioner requires 24-hour supervision from family members (informal help) and
mandatory professional assistance (from at least a medical technician) for the
continuous provision of nursing care.
In substance related to this supplement and mirrored in social assistance schemes
is the assistance and attendance allowance (dodatek za pomoč in postrežbo) for
social assistance recipients. The latter are entitled to increased social assistance in
connection with this supplement if due to old age, sickness or invalidity they require
assistance from another person in order to perform basic activities of daily living.
This has been regulated in the Financial Social Assistance Act (ZSVarPre)39 and is
of subsidiary nature, provided only when the social assistance recipient is not
entitled to any similar supplement from another scheme (e.g. from pension and
invalidity insurance). It is linked to the allowance granted by pension and invalidity
insurance, since the qualifying conditions and amounts are the same. The distinc-
tion is that the allowance granted by mandatory pension and invalidity insurance is
financed from social security contributions, and the allowance for social assistance
recipients is financed from the State budget.
The question might be whether this supplement for social assistance recipients
presents a right of its own or whether it is an integral part of a general financial
social assistance. This might be important for the coordination of social security
systems, where general social assistance is, as a rule, excluded. Nevertheless, even
34
Pension and Invalidity Insurance Act (Zakon o pokojninskem in invalidskem zavarovanju, ZPIZ-
2), Official Journal RS, No. 96/2012, last amendment 40/2017.
35
Definition in Article 7 ZPIZ-2.
36
Article 100 ZPIZ-2.
37
In June 2013 this would amount to 292 Euro (in net terms) or 449 Euro (in gross terms).
38
In June 2013 this would amount to 419 Euro (in net terms) or 645 Euro (in gross terms).
39
Zakon o socialnovarstvenih prejemkih – ZsvarPre, Official Journal RS, No. 61/2010, as last
amended by 88/2016. See also Strban (2011), p. 171.
if it was part of general social assistance, the Court of Justice of the EU might tend
to split it up into a social assistance and a long-term care part, as it has already done
in the past.40
Similar rules as for the abovementioned social insurance and social assistance
supplements apply to the care and assistance supplement (dodatek za tujo nego in
pomoč). It has been regulated in a rather old legislative act, namely in the Social
Care of Mentally and Physically Handicapped Persons Act (ZDVDTP) of 1983.41 It
provides protection to persons who are not able to live and work independently. The
criterion of invalidity qualifies if inborn or acquired in childhood, i.e. before
coming of age (at 18 years of age), or up to the age of 26 years if persons in
question are in schooling. The care and assistance supplement is provided to
recipients of invalidity benefits (nadomestilo za invalidnost), which is also regu-
lated by the ZDVDTP.
Two additional cash benefits have been found in a family benefits scheme,
regulated by the Parental Care and Family Benefits Act (ZSDP).42 These are special
childcare allowance (dodatek za nego otroka) and partial payment for lost income
(delno plačilo za izgubljeni dohodek). The first one is provided as financial assis-
tance to any family with a child who requires special care and protection. The
intention of this benefit is to cover the increased costs the family is facing due to
such special care. It may be provided up to the age of 18 years and can be
prolonged, if the duty to maintain the child exists.
The second benefit, i.e. partial payment for lost income, is provided to one of the
parents if the latter has decided to reduce his/her economic activities to part-time
work or to terminate the employment contract altogether and leave the labour
market, in order to care for a child with severe mental or physical disabilities
(or several children with moderate or advanced disabilities). The partial payment
amounts to app. 735 euro and the recipient is covered by all social insurance
schemes.43
Parental care insurance is also regulated by the ZSDP-1 as a special part, clearly
showing its social insurance nature and distinction to non-contributory family
benefits. When a child is born that requires special care and protection, parental
leave (starševski dopust) and parental benefit (starševsko nadomestilo) are
40
For instance with the UK’s Disability Living Allowance (DLA), whose mobility component was
considered to be of a social assistance nature (a so-called special non-contributory benefit, for
which somewhat restricted rules of social security coordination apply), but whose care component
had to be regarded as sickness (i.e. long-term care) benefit and which was hence subject to all
social security coordination rules. Cases C-299/05 Commission v Parliament and Council [2007]
ECR I-8695 and C-537/09 Bartlett and Others [2011] ECR I-3417.
41
Zakon o družbenem varstvu duševno in telesno prizadetih oseb – ZDVDTP, Official Journal SRS,
No. 41/1983, last amended in 2012 (by the Financial Balance Act).
42
Zakon o starševskem varstvu in družinskih prejemkih – ZSDP-1, Official Journal RS, No. 26/
2014 and 90/2015.
43
Article 84 ZSDP.
424 G. Strban
prolonged for an additional 90 days on grounds of the medical commission’s

opinion.
The medical commission can also establish the need for prolonging the right of
one parent to work part-time and for payment of the social security contributions
(pravica staršev do krajšega delovnega časa in plačila prispevkov za socialno
varnost zaradi starševstva). As a rule, this right is recognised until the child reaches
3 years of age, for two or three children until the youngest child completes first year
of primary schooling, and for four or more children one parent has the right to leave
the labour market until the youngest child completes the first year of primary
schooling. If the child is severely impaired or mentally handicapped, the duration
of the right might be prolonged until such child reaches the age of majority,
i.e. 18 years of age.44 In this part it might be considered as a long-term care benefit.
The right to work part-time due to parenthood is critically evaluated. It is being
argued that it might cause discrimination on two personal grounds. One is indirect
discrimination on gender grounds, since it is usually the mothers that exercise this
right. Social security contributions for settling the difference to the equivalent full-
time work salary are paid only from the proportionate part of the minimum salary.
For instance, if a person works 50%, a salary and contributions are paid for this part;
for the other 50%, the payable contributions are calculated on the basis of half the
minimum salary and covered by the State as an entitlement derived from parental
care insurance. This means that all income replacement benefits (including sickness
cash benefits and old-age pension) are reduced, since the calculation base is
lower.45 In addition, discrimination on the grounds of material standing might
apply, which is one of the prohibited grounds for distinction in the Slovenian
Constitution.46 This right can be exercised by families with a higher, rather than
by those with a lower income, since there is no direct cash benefit.47 It could be
argued that this benefit is reinforcing the male breadwinner model, rather than
contributing to its abolishment.
A special long-term care benefit is provided by the social compensation system.
Although the Slovenian Constitution obliges the legislator to provide special
protection to war veterans and victims of war under the right to social security,
social compensation benefits are in Slovenian legal theory not considered as part of
the social security system. They are part of the broader social protection system.48
Among social compensation benefits are benefits for war veterans, victims of war,
victims of certain criminal acts or of consequential damages ensuing from manda-
tory vaccination.
44
Article 50 ZSDP-1.
45
Strban (2012b), p. 38.
46
Article 14 of the Slovenian Constitution.
47
48
The social protection system is considered to encompass social security, social compensation
and social advantages schemes. Strban (2010/11), p. 367.
The assistance and attendance allowance (dodatek za pomoč in postrežbo) is

provided for war invalids of a disability degree of at least V, i.e. of at least 70%,
according to the War Invalids Act (ZVojI).49 Additionally, war invalids must have
an established need for permanent assistance and attendance with regard to
performing all or a majority of activities of daily living, or require permanent
supervision, or be entitled due to blindness or paralysis. In its substance the
assistance and attendance allowance for war invalids relates to the assistance and
attendance allowance from pension and invalidity insurance. The same applies for
assistance and attendance allowance for war veterans, who have special benefits if
they are older than 55 years or permanently and completely unable to work.50
2.1.2 Long-Term Benefits in Kind
2.1.2.1 Non-acute Medical Care
Linked to mandatory health insurance is non-acute care. Several Slovenian general

hospitals and natural spa resorts run special departments for non-acute medical
treatment. The first specialised nursing hospital (negovalna bolnišnica) in Slovenia
was opened in 2011 as part of the University Medical Centre Ljubljana. It is
financed from mandatory health insurance, according to the general tripartite
agreements between the Health Insurance Institute of Slovenia (HIIS as insurance
carrier), healthcare and care providers, and the State. On their basis, specific
contracts are concluded between the HIIS and providers. In a nursing hospital
(or care department of a general hospital or a natural spa) care activities are
emphasised. A stable medical condition is one of the requirements for admittance
to a nursing hospital. Further, the majority of staff consists of nurses, and only few
are physicians.51
Home care is provided by the range of services. Community services provide
medical nursing care at the home of the person reliant on long-term care. The
beneficiary is provided nursing care services, preventive home visits (by specialised
nurses) and assistance with obtaining adequate social treatment. The costs of
nursing care services are covered by the mandatory health insurance.
A concept that has gained importance in recent years,52 although it is not entirely
new,53 is the so-called community psychiatry (skupnostna psihiatrija, obravnava v
49
Zakon o vojnih invalidih—ZVojI, Official Journal RS, No. 63/1995, last amended by 19/2014.
50
Article 13 of the War Veterans Act (Zakon o vojnih veteranih—ZVV), Official Journal RS,
No. 63/1995, last amended by 32/2014.
51
Vrhnjak (2011), p. 6.
52
Švab (2011).
53
It seems that it had already been used in 1881 by Dr. Karl Bleiweis, who advocated the inclusion
of the families in the treatment of psychiatric patients and adjustment of their living and working
conditions. Ibid, p. 4.
426 G. Strban
skupnosti). It is a team approach to the treatment of patients after their discharge from
treatment at the secondary (specialist) level into home care, providing their social
inclusion, maintenance and follow-up of their health condition. The question as to
whether the care of persons with mental disabilities should be institutional or
community-based is outdated. Persons with mental impairments are, to a large extent,
treated outside of institutions. The reason might be lack of institutional care, but more
importantly, there is a shift from institutional care to community-based care. People
usually want to remain within the familiar environment with familiar people.
Of course, both, institutional care and care in the community, are required, but to
a varying extent. Although more funds are invested in institutional care, it should
remain an exception provided only in urgent cases and for severe disabilities, i.e. if
continuous and intensive treatment and care are required. According to the Mental
Health Act (ZDZdr)54 the coordinator of care in the community is to be a person
employed at the centre for social work, who has the task to supervise and coordinate
the treatment and care of a beneficiary. Individualised medical and social care
services should be foreseen in the community care plan.55
2.1.2.2 Social Services
Social (care) services (socialnovarstvene storitve) are part of the social assistance
scheme in Slovenia. According to the Resolution on the National Social Assistance
Program 2013–2020,56 the principles of social assistance are the safeguarding of
human dignity, social justice, solidarity and responsibility of everyone to provide
security for him- or herself and his/her family, the empowerment of individuals, and
individualised social assistance measures and intergenerational solidarity.
Contrary to financial social assistance, social services are intended to prevent
and eliminate social problems which are not of a financial nature. Social services
for persons reliant on long-term care may be provided in the form of home care,
semi-residential care or residential care. They are provided within the public
service network by the centres for social work, homes for elderly, residential
homes for mentally and physically disabled adults, welfare employment centres
(providing care and organising employment for mentally and physically disabled
adults), institutions for the training of severely mentally disabled children, and
special institutions for home care.57
Social services are, as a rule, available to permanent residents of Slovenia
(regardless whether they are Slovenian nationals with a permanent residence status
or foreigners with a permanent residence permit). In addition, they have to be
54
Zakon o duševnem zdravju—ZDZdr, Official Journal RS, No. 77/2008.
55
Articles 2 and 91 ff. ZDZdr.
56
Resolucija o nacionalnem programu socialnega varstva za obdobje 2013–2020, Official Journal
RS, No. 39/2013.
57
available to workers who are EU nationals, since social services might qualify as
social advantages according to Regulation 492/2011/EU.58
Social services are regulated by the Social Assistance Act (ZSV),59 whereas
financial social assistance was excluded from ZSV. Since 2010, it has been regu-
lated by the aforementioned Financial Social Assistance Act (ZSVarPre). It has
been proposed that a new legislative act should deal with social (care) activities,
which would make the ZSV obsolete. As yet, however, such a legislative act has not
been passed.
2.1.2.3 Domestic Care
Assistance to family members (pomoč družini) encompasses three types of assis-

tance, i.e. assistance for the home (professional counselling for family relationships
and their functioning), home care and social servicing.
2.1.2.3.1 Home Care (pomoč na domu)

Home care includes social care at home and mobile help. At the end of the year
2011, there were 6624 users of home care and the number has been slowly
increasing since the year 2006. The majority of users lived in larger cities (Lju-
bljana, Maribor, Novo mesto, Celje, Nova Gorica). It is clear that long-term care
services are provided predominantly to the elderly. As much as 85.7% of all
beneficiaries were entitled to home care due to old age, and more than 50% of all
beneficiaries were older than 80 years of age. Two thirds were women.60
Care at home can be utilised by beneficiaries with provided living environment
(e.g. they own a flat or a house)61 who cannot look after and take care of themselves
due to old age (65 years or more) or severe disability and whose family members
cannot provide such care either. One of the conditions is that the beneficiaries’
remaining physical and mental capacity enables them to continue living in their
familiar environment if organised temporary assistance is provided.
Care at home covers distinctive forms of assistance and services that offer
beneficiaries (at least a temporary) alternative to institutional care. Service is
adjusted to the needs of an individual beneficiary and may include housework
assistance, assistance with personal hygiene and with maintaining social contacts.
According to the Rules on Standards of Social Services62 home care can be
58
Article 7 Regulation 492/2011/EU on freedom of movement for workers within the Union,
Official Journal L 141, 27 May 2011.
59
Zakon o socialnem varstvu—ZSV, Official Journal RS, No. 54/1992, as last amended by 54/
2017.
60
Nagode et al. (2012), p. 16.
61
Reportedly, in Slovenia the majority of inhabitants/families own real estate, still only the
minority rent an apartment or a house.
62
Pravilnik o standardih in normativih socialnovarstvenih storitev, Official Journal RS,
No. 45/2010, as last amended by 102/2015.
428 G. Strban
provided on all days of the week, but up to a maximum of 20 h weekly. In the case
of enhanced need for home care, which would have to be provided by two
caregivers, the number of hours can be increased by one third.63
Mobile help ensures that persons with mental and physical disorders can receive
professional assistance at home. It depends on the beneficiaries’ needs and focuses
also on their family members. It encompasses tasks and procedures for correcting
disorders, counselling and therapeutic work. It is aimed particularly at special
pedagogics, social and psychological treatment and employment. Entitled to mobile
help are children, youths and adults with moderate, severe or serious mental or
physical development disorders to whom this service provides an alternative to
guidance, care and employment under special conditions or institutional care.64
2.1.2.3.2 Social Servicing (socialni servis)

Social servicing includes assistance with domestic and other work in cases of
childbirth, illness, disability, old age, accidents and in other cases where such
assistance is required for the inclusion of a person in the everyday life of the
community.
It includes, for instance, the bringing of prepared meals (meals on wheels),
shopping and the delivery of food and other necessaries, preparation of heating
and food for the winter, laundry and ironing, maintenance of the apartment sur-
roundings, thorough cleaning of the apartment and repairs, furnishing, organisation
of different kinds of companionship, pedicure, body care services and maintenance
of appearances, pet care, supervision of medicine intake, and the safeguarding and
supervision of the user’s condition during the night. A user is any person who orders
certain parts of the service and assumes the payment of such service. However,
service providers are only persons and organisations with an authorisation of the
Ministry of Labour, Family, Social Affairs and Equal Opportunities.
In addition, personal assistance (osebni pomočnik) is a programme run by
persons with disabilities themselves, and it is financed by the state, the local
community and user funds (it is not yet available throughout the country). In
2017 the Personal Assistance Act (Zakon o osebni asistenci-ZOA) was passed and
should be applicable as of the beginning of 2019.65 Social alarm or telecare systems
are organised locally. It is not provided within the public service network and is
available only in some municipalities. Sheltered housing is also on the rise and is
partially funded by the public sector (municipal housing funds, Pension Real Estate
Fund) and partially by private investors. Formalised public-private partnerships are
also possible.
63
Article 6 of the Rules on Standards of Social Services.
64
More at the Ministry of Labour, Family, Social Affairs and Equal Opportunities, www.mddsz.
gov.si, October 2017.
65
More at www.missoc.org, October 2017. ZOA, Official Journal RS, No. 10/2017.
2.1.2.4 Residential Care
2.1.2.4.1 Semi-Residential Care

Semi-residential care is organised in day care centres. The latter are organised
locally and may offer services like protection, food supply, health care, social
integration, social activities and transport (as an additional service). Day care is
usually also performed in the welfare employment centres, in residential homes for
the elderly and in private institutions on a basis of a concession contract concluded
between institutions performing day care and the State, or on the basis of a special
work permit, issued by the Ministry of Labour, Family, Social Affairs and Equal
Opportunities. It is provided for a certain amount of hours daily.66 Group homes
and day centres for people with mental health problems (stanovanjske skupine) are
also available. They are organised locally, not provided within the public service
network. They are currently available only in some municipalities and are partially
financed by the State, and partially by the local community and user funds.
2.1.2.4.2 Residential Care

Maintaining the network of residential care facilities is mainly a public responsi-
bility. The State and communities have the obligation to establish and maintain
facilities and to develop the network of social care homes. The system of financing
residential care is a combination of public and private responsibilities. Beneficiaries
(and their family members) have to cover the expenses for accommodation, food
and social care services, but if their income is insufficient, the state or municipality
might contribute to the payment up to the full price.
Residential care in Slovenia is provided by several institutions and regulated by
the ZSV. It encompasses all forms of assistance in an institute, in another family or
any other form of organised assistance. Its purpose is to substitute or supplement the
functions of a person’s home and their own family, especially in the form of
placement, organised food, care and medical care.67
Residential homes for the elderly (domovi za starejše) have the longest tradition
in Slovenia and are operating in the public and private domain, in the latter case as
private institutions with licences or concessions. Homes for the elderly run special
(long-term) care departments.
One of the problems might be that the demand for places in homes for the
elderly68 is exceeding the supply. Especially in larger cities, not every person
reliant on long-term care can use this kind of residential care. For instance
66
Detailed regulation can be found in the already mentioned Rules on Standards of Social
Services.
67
Article 16 ZSV.
68
According to the information from the Ministry of Labour, Family, Social Affairs and Equal
Opportunities, there are 55 residential homes for the elderly in Slovenia, www.mddsz.gov.si,
June 2013.
430 G. Strban
according to the information provided by the Association of Social Institutes of

Slovenia, there are actually no places in the city of Ljubljana and its surroundings.
Capacity in Slovenia is 20.607 placements and only seven places are availabe. At
the same time, there are 19,552 active applications (for which placement proceed-
ings have been initiated) and 7,334 actual applications (for which immediate
placement is requested).69
Institutional care of children and young persons deprived of normal family life
also includes education and preparation for life. Children and young persons
suffering from a mental or physical development disorder who are placed in
institutional care are also provided with training, care and guidance.
Special social care homes for adults (posebni socialnovarstveni zavod za
odrasle) operate special forms of residential care for adults with mental or physical
disorders. They may exercise market activities, with the purpose of raising the
quality of life and care.
In residential facilities health care is provided through the mandatory health
insurance of the HIIS and through the contract it concludes with healthcare pro-
viders in such institutions.
The service of guidance, care and employment under special conditions is an
organised form of care provided to adult persons with disabilities. Special services
should enable such persons to actively participate in social life and in a working
environment in accordance with their abilities.70 The service also provides other
forms of care that are to enable the beneficiaries and their families to work and be
active in society. Beneficiaries, adults suffering from moderate, severe or serious
mental disorder, are of course remunerated for their work.
Any disabled person who has reached the age of majority and suffers from a
serious disturbance in his/her mental or physical development has the right to
choose a family assistant (družinski pomočnik). One of the entitlement conditions
is that he/she require care from another person for performing all basic activities of
daily living. Long-term care is, as a rule, provided by close family members. If one
of the parents was already entitled to partial payment for lost income (one of the
family benefits), the right to a family assistant is recognised without the need for
new attestation through the Invalidity Commission. It is acknowledged that the
requirement for long-term care services does not cease just because a person
(a child) who is reliant on long-term care has reached the age of majority.
69
According to the overview of applications and vacancies of 2 November 2017, of the Associ-
ation of Social Institutes of Slovenia (Skupnost socialnih zavodov Slovenije, www.ssz-slo.si).
70
Article 17 ZSV.
2.2 Legislative Proposals
Long-term care benefits can be found throughout the social security system and
some have even been found outside of it. Therefore, it could be argued that the
Slovenian long-term care system is of a mixed nature, encompassing long-term care
benefits (in cash and in kind), stemming from social insurance, social assistance,
family benefits and social compensation schemes.
It has been established that existing cash benefits and benefits in kind are not
linked within a uniform system and that, in practice, better coordination among the
institutions providing them could be hoped for. The entitlement conditions and
procedures for acquiring various similar long-term care benefits vary. Cash benefits
are provided to certain groups of persons, hence excluding others who might also
require them. In addition, the services are not individualised, access to services and
their quality might vary to a greater extent across country, and the demand for
services is higher than the facilities available. Waiting periods for being accepted
into residential care are long, especially in larger cities. Services in the home
environment of the beneficiary are underdeveloped and residential care is still
common practice. It has been argued that the existing system is not adjusted to
the needs of the growing number of persons relying on long-term care, which is
expected to rise in the future.71
It has also been realised, that changing family structures (including the devel-
opment of a dual earner model or a full-time/part-time earner family model)72 and
the demographic situation require legislative action. Several proposals for new
long-term care insurance have been written. In the present paper mainly the
legislative proposal from 2010 made publicly available will be analysed.
It has been suggested that a new branch of social insurance should be
established, similar to the mandatory health insurance in two aspects. Everyone
covered by mandatory health insurance should also be insured for long-term care,
which is almost the entire population,73 and it should be managed under the same
organisational structure as mandatory health insurance (with separate accounts).
The already existing (smart) health insurance card should be used for claiming
long-term care benefits.74
Although it seems similar to the German care insurance,75 it shows certain
distinctions from the former. For instance, reliance on long-term care is
71
Ministry of Labour, Family, Social Affairs and Equal Opportunities (2010), p. 4.
72
Hohnerlein and Blenk-Knocke (2008), p. 13.
73
Slovenian mandatory health insurance is characterised by a very broad vertical and horizontal
solidarity. Everyone (employees, public servants, the self-employed and farmers, regardless of
their income and that of their family members) active or (permanently) residing in Slovenia is
covered by the uniform scheme. Reportedly, less than 0.5% of inhabitants were (temporarily)
without health insurance coverage at the end of 2012. ZZZS (2013), p. 19.
74
Art. 23 of the 2010 Proposal.
75
Extensively Igl, in von Maydell et al. (2012), p. 929 ff.
432 G. Strban
automatically expected to last for at least 3 months and care is provided for at least
4 h a day. No grades or levels of reliance on long-term care are foreseen. Instead, a
long-term care coordinator (of the insurance carrier) should organise care and
propose an individual long-term care plan in cooperation with the beneficiary and
his or her family. Such plan should be confirmed by the opinion of two level long-
term care commissions appointed by the insurance carrier and composed of various
experts (for instance experts on social assistance, health care, family medicine,
medical and other rehabilitation, construction, if necessary),76 and by the adminis-
trative decision issued by the insurance carrier.
Priority should be given to benefits in kind provided by contracted providers.
The insurance carrier should cover the costs of the benefits package according to the
individual long-term care plan that should not exceed a certain amount. The
principle of self-responsibility is emphasised for the benefits up to a certain limit,
and any costs exceeding this limit should be borne by the individual (or private
insurance or by social assistance, if required). Cash benefits shall be granted only if
the beneficiary chooses services outside the public service provision network. They
should amount to only 40% of the recognised benefits package,77 which clearly
shows that care services (i.e. benefits in kind) should have priority.78
3 Defining Long-Term Care
3.1 Social Risk Definition
The notion of long-term care as such is not used in Slovenian legislation. For each
benefit which could be classified as a long-term care benefit, the scope of benefi-
ciaries and entitlement conditions are specified. By contrast, traditional social
security risks,79 such as sickness, maternity (and paternity, or parenthood in the
broader sense), old age, invalidity, death, accidents at work or occupational dis-
eases, unemployment or having a family, are rather clear and similarly structured in
many countries. Their limitations are set in legislative acts, judicial practice and/or
legal theory.
Since there is no legislative or judicial definition, the question related to long-
term care might be twofold. On the one hand: how should we name the social risk
76
Art. 110 of the 2010 Proposal.
77
Cash benefit could also be granted if benefits in kind cannot be provided. In this case the full
amount of the benefits package would be granted. Arts. 33 and 34 of the 2010 Proposal.
78
Strban (2012a), p. 266.
79
“Traditional” social security risks are (not exhaustively) mentioned in the Universal Declaration
of Human Rights (Article 25) and enumerated in ILO Convention No. 102 concerning Minimum
Standards of Social Security, 1952.
upon whose materialisation long-term care benefits are to be provided? And, on the
other hand: what are the basic characteristics of this social risk?
3.1.1 Defining the Concept
It could be argued that the terminology used 30 or 40 years ago was not uniform
across Europe. For instance, in the UK at first the term being in need of nursing care
and in Germany the term Hilflosigkeit seem to have been used.80 In France care of a
third person (tierce personne) appears to be emphasised.81 It is similar in Slovenia,
where the assistance and attendance allowance is provided when care services from
another person are required in order to perform all or a majority of activities of daily
living.
In other countries, more suitable terms have evolved. For instance, terms like
long-term care (in the UK and generally in the English language), dependency
(de´pendence in France or dependencia in Spain)82 or loss of autonomy (perte
d’autonomie in France), and need for care (Pflegebed€ urftigkeit in Germany and
Austria)83 seem to have become established and most commonly used.84
In Slovenia, it has been argued that need for long-term care might not be the
most appropriate term, since other social risks are not defined from the viewpoint of
the beneficiary and his/her needs either. For instance, sickness is used rather than
need for medical care (sickness benefits in kind). It is similar with other social risks
which are conditioned by required income replacement or coverage of additional
costs.
The more suitable term would appear to be dependency or loss of autonomy. It is
also used in some international legal instruments. For instance, Recommendation
No. R (98) 9 on the Committee of Ministers to Member States85 on dependency
defines dependency as a state in which persons by reason of lack or loss of physical,
psychological or intellectual autonomy, require significant assistance or help with
carrying out their usual day-to-day activities. It is emphasised that dependency is
linked predominantly, but not exclusively, to old age.
The Charter of Fundamental Rights of the EU also mentions the social risk of
dependency under the topic of social security and social assistance in Chapter IV:
80
Schulin (1997), p. 6. For instance, the term helplessness allowance (Hilflosenentsch€adigung) is
used e.g. in Switzerland and Liechtenstein (www.missoc.org, June 2013).
81
Kerschen et al. (2005), p. 13.
82
Art. 2 of the Spanish Ley 39/2006, de Promoci on de la Autonomía Personal y Atenci on a las
personas en situaci on de dependencia, Boletı́n Oficial del Estado, No. 299/2006. On care (depen-
dency) also Pieters (2006), p. 93.
83
Roller (2007), Udsching et al. (2010), p. 69. Greifeneder and Liebhart (2008), p. 5.
84
Missoc Secretariat (2009).
85
Adopted by the Council of Europe on 18 September 1998 at the 641st meeting of the Ministers
Deputies.
434 G. Strban
Solidarity.86 Moreover, it also emphasises that elderly persons and persons with
disabilities should have the possibility to live independent lives.87
Despite these arguments, applying solely the term dependency might not be the
most accurate solution. It could be mistaken with particular diseases causing depen-
dency (and hence representing the social risk of sickness). Also the term loss or
reduction of autonomy might cause confusion. For instance, every child is dependent
(at least until certain age), since he/she cannot act autonomously in legal matters and
requires certain guidance by parents or guardians. Further, an adult person’s capacity
to act might be limited or withdrawn, causing (a partial) loss of (legal) autonomy.
Dependence could also mean financial dependence and Recommendation No. R
(98) 9 explicitly excludes such dependence from the definition applied therein.88
The term long-term care, which is also mentioned in the so-called Social Open
Method of Coordination,89 could be used as well. However, it describes schemes or
benefits, rather than the social risk itself. In the proposed new Slovenian long-term
care insurance only long-term care activities are defined.90
Therefore, it has been suggested to combine the notions of dependency and long-
term care. The social risk could then be defined as dependency or reliance on long-
term care, of course with care provided by another person (odvisnost od oskrbe
drugega).91 The term reliance on care is also used by the Court of Justice of the EU
(CJEU).92
3.1.2 Characteristics of Reliance on Long-Term Care
Whatever term is being used, there are some common features to this independently
defined social risk. These might be used as minimum common criteria for identi-
fying long-term care benefits. First, the autonomy (physical, mental, intellectual or
sensorial) of a person is either reduced or lost, or has never been (fully) acquired.
The reason might lie in the decreasing strength of frail elderly persons, a (serious)
disease or (considerable) incapacity. Among these, the reduction of autonomy due
to old age seems to be the most common reason. The consequence for persons
confronted with any such situation might be dependence on a significant amount of
assistance from another person, usually over an extended period of time. The goal
86
See Article 34 of the EU Charter.
87
See Chapter III Equality (Articles 25 and 26) of the EU Charter.
88
See Appendix to the Recommendation.
89
The Single Social Open Method of Coordination was established in 2005 by the Commission
Communication entitled Working together, working better—A new framework for the open
coordination of social protection and inclusion policies in the European Union, COM (2005)
706 final.
90
Article 2 of the 2010 Proposal.
91
Strban (2012c), p. 220.
92
For instance in cases C-160/96 Molenaar, EU:C:1998:84, Para 3 and C-388/09 da Silva Martins,
EU:C:2011:439, Para. 40. On notions also Fine and Glendinning (2005), p. 601, or Igl (2008), p.1.
of long-term care benefits should be to enable the beneficiary the performance of

the essential activities of daily living.
Taking into account the above criteria we could define reliance on long-term
care as a situation in which persons who, over an extended period of time, on
account of old age, disease or incapacity, and linked to lack or loss of physical,
mental, intellectual or sensorial autonomy, require assistance from (an)other person
(s) or considerable help with carrying out essential daily activities.93
It shall be analysed how an ‘extended period of time’ and ‘loss of autonomy’ can
be determined. In the next chapter, the relation of reliance on long-term care to
other social risks, among them sickness, invalidity and old age, will be explored.
3.1.2.1 Extended Period of Time
One of the difficulties might be to define the term “extended period of time.” For
instance, in Slovenian legislation there is no such condition for the granting of long-
term cash benefits. Assistance and attendance allowance is granted when the need
for assistance and attendance is established by the Invalidity Commission of the
Pension and Invalidity Insurance Institute of Slovenia (PIIS). It is provided for as
long as such need persists.94 The same applies for assistance and attendance
allowances according to other legislative acts. In some, it is expressly specified
that re-evaluation is possible. For instance, the centre for social work may ask the
PIIS invalidity commission to re-establish the need for long-term care of a person, if
it estimates that the medical condition of a social assistance recipient has improved
to such extent that a lower level of assistance and attendance allowance could
suffice or that such allowance would no longer be required.95
Similarly, long-term care, parental and family benefits (special childcare allow-
ance, partial replacement of lost income, prolonged parental leave/benefit and
prolonged part-time work) are provided on the grounds of the evaluation of medical
commissions, appointed by the Minister of Labour, Family, Social Affairs and
Equal Opportunities, on the proposal by the Paediatric Clinic.96 These benefits
are granted for as long as the condition of a child necessitates these (or until the
person reaches the age of majority and ceases to be legally considered as a child).
There is also no specific time frame for benefits in kind. For instance, as for
nursing hospitals, placement should be of a temporary nature. Patients who have
concluded acute medical treatment, but are not yet ready to lead an independent life
in their homes (which might have to be adjusted to their needs) or in a residential
facility, may be admitted. The decision on admittance is taken by the respective
team of experts, according to the overall plan of treatment and care. Hence, longer-
93
Jorens and Spiegel (2011), p. 14.
94
Articles 128 and 181 ZPIZ-2.
95
Article 32 ZSVarPre.
96
Article 3a ZSDP.
436 G. Strban
term care is foreseen for such patients, and accommodation in the nursing hospital
serves to bridge the transitional stage between medical treatment and long-term
care arrangements.97 There are other long-term care services that are also not
related to a specific time requirement.
However, according to the proposed new legislation on long-term care insur-
ance, the reliance on care from another person is to be expected to persist for more
than 3 months. The assistance required must be assumed to be considerable,
i.e. amount to more than 4 h per week.98 The need for long-term care should be
established by the (first and second instance) commissions for long-term care of the
insurance carrier (Health Insurance Institute of Slovenia—HIIS). These commis-
sions should also approve the individual long-term care plan.99
3.1.2.2 Reduced Autonomy in Performing Essential Activities of Daily

Living
The question might also be how to define a loss or reduction of autonomy and,
especially, what could be considered as an essential activity of daily living. In the
current Slovenian legislation, the benefits requirements and scope of benefits are
defined separately for each long-term care benefit.
3.1.3 Long-term Cash Benefits
It seems that with regard to long-term cash benefits priority is given to assistance
and attendance allowance from the mandatory pension and invalidity insurance.
The need for such an allowance is to be established by the Invalidity Commissions
of the PIIS.100
Pensioners and blind or immobile active persons are reliant on long-term care
from another person if they are in need of assistance and attendance to be able to
meet all or a majority of their basic vital needs to perform activities of daily living.
One of the conditions in both cases is that they are reliant on care due to permanent
changes in their state of health. If this was not the case, the state of health could still
be remedied by medical care and medical rehabilitation services.
Beneficiaries require care from another person to perform all their basic vital
needs if they are unable to move independently within and outside of their home
despite their own efforts or despite the assistance of orthopaedic aids. They are also
unable to feed themselves without assistance, get dressed and undressed, put on and
97
Vrhnjak (2011), p. 6.
98
99
Article 4 of the 2010 Proposal. At least three month condition is foreseen also in the 2017
proposal (Article 2)
100
Article 102 ZPIZ-2.
take off their shoes, maintain their personal hygiene, and perform other basic tasks
indispensable for their survival.101
To be able to meet the majority of basic vital needs, assistance and attendance is
required when, due to their inability to meet the majority of basic vital needs as
described above, or if they require permanent supervision as severe psychiatric
patients in home care. The latter is the case with chronic patients who have lost all
control of reality and who, due to the mental, physical or social implications of the
disease, cannot meet the basic vital needs required for daily living.102
Immobile persons are those whose mobility has been reduced by at least 70%. It
is deemed to be reduced in persons who, due to the impairment of limbs or other
parts of their locomotor system, move only with great difficulty and must put
excessive efforts therein, both with the use of orthopaedic aids and without
(if use is not possible). Such reduced mobility is the case, for instance, with all
paraplegic persons who, due to the paralysis of the lower limbs, are confined to a
wheelchair, or other persons who are permanently confined to a wheelchair, persons
who, due to a partial paralysis of the limbs (tetraparesis, paraparesis, hemiparesis),
have difficulties in moving with the use of supporting devices and must put
excessive efforts therein, persons who have had above-knee amputations and
despite using prostheses, can only move with the support of crutches or canes,
persons with neuromuscular or muscular diseases where electrophysiological
examinations and results of muscular tests demonstrate such a degree of deteriora-
tion of the muscle functions within the locomotor system that independent move-
ment in an area without outside assistance is no longer possible, or persons with a
loss of both upper limbs, with stumps inappropriate for the use of functional
prostheses (work, mechanical or electronic).103
Assistance and attendance allowance for social assistance recipients (according
to ZSV) and care and assistance supplement for mentally and physically
handicapped persons (according to ZDVDTP) are of subsidiary legal nature, but
linked to the assistance and attendance allowance from pension and invalidity
insurance (according to ZPIZ-2). The same Invalidity Commission of the PIIS
establishes the need for assistance and attendance, i.e. for long-term care for
performing all or a majority of the basic vital needs. The same criteria as described
above are being applied.104 These criteria are also used when establishing the need
for long-term care in war invalids and war veterans entitled to the assistance and
attendance allowance according to ZVojI and ZVV.105
Children requiring special care and protection whose parents are entitled to long-
term care benefits from parental care insurance and family benefits schemes are
children with disturbances in their mental development, children who are blind and
101
Article 101 ZPIZ-2.
102
Articles 101 and 102 ZPIZ-2.
103
Article 102 ZPIZ-2.
104
Article 32 ZSVarPre and Article 9.a ZDVDTP.
105
Article 24 ZVojI.
438 G. Strban
visually impaired, deaf and hard of hearing, children with failing functions of vital
organs, with physical disturbances in their development, long-term seriously ill
children who require more intensive care and protection. Next to this general
definition, particular requirements may be set for certain benefits. For instance,
the amount of the childcare supplement is doubled for children with severe mental
disability (e.g. requiring constant care, assistance and guidance, whose movement,
understanding and following of instructions is very limited, whose IQ test is below
20, whose mental age does not exceed the age of 2) or severe motoric impairment
(e.g. the child has very few useful moves, cannot move independently, is entirely
dependent on assistance from another person, easily disturbed in communication,
communicates by means of non-verbal or substitute communication).106
The reliance of children on special care and protection is to be established by the
aforementioned medical commissions (of the first and second degree), appointed by
the Minister of Labour, Family, Social Affairs and Equal Opportunities, on the
proposal by the Paediatric Clinic.
3.1.4 Long-term Cash Benefits in Kind
Also long-term care benefits in kind can be applied for only on the condition that the
autonomy of an individual beneficiary has been established as reduced. Social care
services provide assistance in terms of personal hygiene and daily activities (getting
up, dressing, moving, walking, communicating and orientation), i.e. activities
which cannot be performed by the beneficiary alone. Special forms of care are
designed to maintain and develop the person’s independence and social relations
and also focus on occupational activity, the correction of disorders, therapy, active
leisure time and solving personal and social distress. They are professionally
assessed and tailored to the needs of the beneficiary.
For instance, persons entitled to residential care for the elderly are treated
according to their individual needs when granted benefits in kind. The type of
residential care (care I, II, IIIA, IIIB and IV) depends on the individual assessment.
For instance, in care I, the person involved needs assistance to a very limited extent
(mostly very basic assistance and social care), whereas care IV is required by
persons with serious and long-lasting mental problems or dementia who need
more or less constant and specialised care.
Also the right to choose a family assistant is evaluated individually. It is granted
to a disabled person if one of the parents was already entitled to family benefit of
partial payment for lost income, or if invalidity has been recognised according to
ZDVDTP, or if the PIIS Invalidity Commission has established a severe distur-
bance in the mental development of or severe motoric limitations in a person, who
requires assistance with performing all basic living needs; such assistance can be
provided by a family assistant.107
106
Article 79 ZSDP-1.
107
Article 18f ZSV.
3.2 Proposed New Legislation
The long-term care system should become more transparent and more uniform rules
should be introduced. This has been foreseen with the Proposal of the Long-Term
Care and Long-Term Care Insurance Act of 2010 (and its 2017 version). Many of
the abovementioned benefits should be integrated into a more uniform system of
long-term care and long-term care insurance. This would include all assistance and
attendance allowances, partial payment for (a parent’s) lost income, home care,
residential care and the right to choose a family assistant.108
There is a distinction between reliance on long-term care for performing all basic
activities of daily living and reliance on long-term care for supporting daily
activities.
The basic activities have to be performed for the preservation and maintenance
of vital functions, like eating and drinking, maintaining personal hygiene, dressing
and undressing (also maintaining proper body temperature), using the toilet, mov-
ing (also sitting, standing-up and placing the body in a proper position, sleeping and
resting.109
Supporting activities of daily living are considered to be activities that allow an
individual to live independently in his or her home or other environment. They
consist mainly of household chores and the like, such as shopping, cooking,
washing, banking operations, postal and telephone services (like paying bills and
sending letters), staying connected to a person’s living environment by means of
telecommunication equipment, transportation and guidance, and other tasks related
to the exercise of basic activities of daily living.110
The level of reliance to long-term care should be established by multi-
professional long-term care commissions (or expert worker, according to 2017
proposal). They should verify whether all possibilities of medical care and medical
rehabilitation, which could reduce the reliance on care, have been exhausted. If
non-acute medical treatment is still in progress, the decision can be postponed until
such treatment is completed. The long-term care commission issues an opinion in
which it may confirm, or modify, or supplement the individual care plan. Based on
such opinion the administrative decision should be issued by the HIIS (which
should be renamed into Health and Long-Term Care Insurance Institute of
Slovenia).111
A clear definition of the risk of reliance on long-term care should increase
awareness and show similar features of distinctive long-term care benefits and
determine when social security law should and when it should not be applied.
108
109
110
111
440 G. Strban
3.3 Delimitation from Other Social Risks
Although the risk of reliance on long-term care might sometimes be difficult to

distinguish from (and may be overlapping with) other social risks such as sickness,
invalidity and old age, employment injury and occupational disease, or having a
family (with a child reliant on long-term care), it should be perceived as an
independent social risk.
As it has been shown above, linking it to various traditional social security risks
may result in a variety of similar benefits (like the assistance and attendance
allowance, regulated or mentioned in many legislative acts, or non-acute medical
care provided in a hospital setting, or linked to other social services) which reduces
transparency and legal certainty. Therefore, it is legally important to make a
delineation between traditional social risks and the risk of reliance on long-
term care.
As a rule, the Slovenian legislator does not define social risks as such. Their
features could be deducted from benefit eligibility conditions, legal (especially
judicial) practice and legal theory. The only social risk being partially defined is
the risk of accidents at work or occupational disease. It could be one of the causes,
among others, also for sickness or invalidity. Both could (as irregularities in the
functioning of a human body), next to (regular) old age, cause a reduction in a
person’s autonomy to perform the activities of daily living and hence reliance on
long-term care.
3.3.1 Delimitation from Occupational Disease or Injury
Accidents at work (sometimes called employment injury, although it is no longer

related only to employment and workers with employment contracts)112 or occu-
pational disease could be one of the causes for reliance on long-term care. They are
recognised as a special social risk,113 although in Slovenia there is no separate
social security scheme covering this risk. Preventive measures are governed pre-
dominantly by the Occupational Safety and Health Act (ZVZD-1).114
The uniform Health Care and Health Insurance Act (ZZVZZ)115 and the already
mentioned ZPIZ-2 (on pension and invalidity insurance) govern social insurance
112
For instance Regulation (EC) 883/2004/EC on the coordination of social security systems, OJ L
166, 30 April 2004, uses the notion of accidents at work (e.g. in its Article 3) and the older ILO
Social Security (Minimum Standards) Convention of 1952 (No. 102) uses the notion of employ-
ment injury (e.g. its Article 31).
113
Cf. also Part VI of the ILO Social Security (Minimum Standards) Convention of 1952
(No. 102). It is legally binding also for Slovenia, Official Journal FLRJ-MP No. 1/1955 and
Official Journal RS-MP, No. 15/1992 (succession of international treaties). Slovenia is bound also
by the Employment Injury Benefits Convention of 1964 (No. 121). Kalčič M in; Novak et al.
(2006), p. 393.
114
Zakon o varnosti in zdravju pri delu (ZVZD-1), Official Journal RS, No. 43/2011.
115
Zakon o zdravstvenem varstvu in zdravstvenem zavarovanju (ZZVZZ), Official Journal RS,
No. 9/92, last amended in 2013.
rights even in case the risks of accidents at work or occupational disease were to
materialise. Nevertheless, easier access to social insurance rights and their more
favourable scope is determined if an injury, disease, invalidity, physical impairment
or death is work-related.
Accident at work and occupational disease are defined in the ZPIZ-2116 and the
same definition is used also by the ZZVZZ (in mandatory health insurance).117 An
accident at work is defined as an injury sustained as a result of a direct and
mechanical, physical or chemical effect of short duration. In addition, it is also
defined as an injury sustained as a result of rapid changes of bodily posture, sudden
bearing loads to the body or other changes in the physiological condition of the
organism. To be recognised as an accident at work, such injury has to be in causal
relation to the performance of the work or the activity on the grounds of which the
person concerned has been insured. An accident at work might also be an injury
sustained on the way to or from work (but since the beginning of 2013 only if
transport to/from work was organised by the employer), or to a physician, and due
to vis major.118
An occupational disease is a specific disease caused by long-term direct influ-
ence of the work process and work conditions at a specific workplace or at work
which directly involves activities on the basis of which the person is insured. There
is a list of recognised occupational diseases119 and it is not possible to claim
benefits on grounds of occupational disease outside this list in individual
proceedings.
The list entails only physical, often measurable, factors in working conditions,
like chemical, physical or biological agents. Other diseases (e.g. mental diseases or
stress or burnout, or diseases caused by repetitive work, night work, work intensity
or violations of dignity) are not mentioned. It is argued, that women continue to lose
out in occupational disease recognition. Women are more likely to work in occu-
pations and sectors which are traditionally associated with “female qualities/tal-
ents”, like caring for others or organising social arrangements. Also due to
historical reasons, men are, as a rule, compensated for a much wider range of
diseases.120 In addition, despite paying social insurance contributions, the employer
might still be liable, due to the principle of full compensation.
Accidents at work or occupational disease might or might not be linked to the
reliance on long-term care. An insured person could be entitled ‘only’ to sickness
benefits (in kind and in cash) or an invalidity pension and other benefits on the
116
Article 66 ZPIZ-2.
117
Article 19 ZZVZZ.
118
Strban G in: Kresal et al. (2016), p. 127.
119
Pravilnik o seznamu poklicnih bolezni, Official Journal RS, No. 85/03, which has remained
applicable also after adopting the new ZVZD-1 in 2011. Due to ZPIZ-2 it is no longer in force
(since the beginning of 2013), but it is still being applied until the new list is published.
120
It is argued that the situation of women might be improved if an open system (system of
evidence for each disease) or at least a mixed system (list plus possible evidence for non-listed
diseases) was introduced. Strban, 2012/2, p. 35.
442 G. Strban
grounds of invalidity. This will usually be under more favourable conditions (like
no co-payments for medical care, no qualifying insurance period, higher income
replacement benefits), since persons suffering from sickness or invalidity due to
work are historically being perceived as commiserated and valued more by society
than persons whose sickness or invalidity is not work-related. If sickness lasted for
an extended period of time and both sickness and invalidity were to result in a
reduction or loss of personal autonomy, requiring considerable assistance from
another person in performing (all or a majority, or basic and supportive) activities of
daily living, long-term care benefits could be provided in addition to sickness or
invalidity benefits.
3.3.2 Delimitation from Sickness
Reliance on long-term care may be closely linked to sickness (or injury), which is
also the case in EU social security law. For instance, the CJEU first assimilated
long-term care benefits to sickness benefits,121 but later on distinguished between
sickness benefits stricto sensu and long-term care benefits (as sickness benefits lato
sensu).122 Also in the so-called Social Open Method of Coordination, goals are set
in both fields, i.e. providing accessible, high-quality and sustainable health care and
long-term care.123
In Slovenia, there is no legislative definition of sickness.124 However, the
definition evolved by taking into account definitions of accidents at work and
occupational diseases, judicial practice125 and teleological interpretations of the
ZZVZZ (legislative act governing health care and health insurance). The social risk
of sickness is defined as endogenously or exogenously caused by physical or mental
disturbance (irregularity),126 and the social risk of injury as exogenously caused by
physical disturbance (including the negative results of rapid changes in bodily
posture, sudden bearing loads to the body) in the functioning of a human body.
Disturbance alone does not suffice to qualify sickness or injury as social risks. The
second part of the definition is required. Sickness or injury must always be causally
related to the need for medical care and/or incapacity for work (and the need for
income replacement).127
121
Decisions in cases C-215/99 Jauch, EU:C:2001:139 and C-160/96 Molenaar, EU:C:1998:84.
122
Decision in case C-388/09 da Silva Martins, EU:C:2011:439.
123
Commission Communication, A renewed commitment to social Europe: Reinforcing the Open
Method of Coordination for social protection and social inclusion, COM(2008) 418 final.
124
Like it is, for instance, in Austrian legislation Allgemeines Sozialversicherungsgesetz (ASVG),
Article 120.
125
Which has mainly developed the definition, for instance, in Germany. Ebsen I in: von Maydell
et al. (2012), p. 762.
126
ILO Conventions No. 24 and 25 on Sickness Insurance (Industry/Agriculture) use the wording
‘abnormal state of his bodily or mental health’. Both are binding also for Slovenia. Strban, in
Novak et al. (2006), p. 343.
127
Extensively Strban (2005), p. 176 ff.
Both, medical care and long-term care include care provided by another person.
The question can be raised how to make a distinction between them. In general,
sickness (or injury) is, as a rule, of shorter duration and can be remedied by proper
treatment, and the autonomy of a sick or injured person in performing basic
activities of daily living is not necessarily reduced. Most importantly, medical
care is provided by specially trained and licensed physicians, and only supported
by others (e.g. nurses). Conversely, long-term care is provided only if care from
another person is required for a longer period of time, for instance for 3 or even
6 months, if the autonomy of the beneficiary to perform daily routine tasks is
reduced and, most importantly, if non-medical care is the predominant form of care.
Nevertheless, there might be some overlapping areas between sickness and
reliance on long-term care. For instance, non-acute care could be provided also in
a hospital environment or special nursing hospitals, sickness could persist for a
longer period of time, medical care can be provided as home care or medical
rehabilitation, and there might be the further question of how to qualify palliative
care and medical (technical) aids.
Even if non-acute treatment is provided in separate hospital departments or
special hospitals and financed by mandatory health insurance, it might be closer
to long-term than medical care, since (non-medical) nursing care has priority. It
could also be the case that next to a primary social risk, a secondary social risk
will occur.128 For instance, a person reliant on long-term care might get sick. The
legislator has to solve such an accumulation of social risks. In Slovenian legis-
lation the assistance and attendance allowance is provided also during the period
of hospitalisation or stay in another inpatient institution, but only for up to
6 months. If hospitalisation or placement lasts longer, the assistance and atten-
dance allowance is stopped.129 According to the proposed new legislation on
long-term care insurance, long-term care benefits are to be suspended during
hospitalisation.130
A similar distinction could be made with regard to palliative care, i.e. care for
terminally ill patients, where medical care can no longer produce the desired
treatment results. It could be provided in hospices (as special institutions, distinct
from hospitals and residential homes for the elderly)131 or at the home of a person.
Since non-medical spiritual and emotional guidance and nursing prevails in this
context, palliative care can hardly be qualified as medical care, despite it being
financed also by the mandatory health insurance.132 Even though it is specific and
128
On primary and secondary social risks in the German social security system
Kreikebohm (1999).
129
Article 128 ZPIZ-2.
130
131
First hospice house was opened in Ljubljana in December 2010, www.hospic.si and http://
ljubhospic.si/, October 2017.
132
Strban (2005), p. 201.
444 G. Strban
may be of a shorter duration (than 3 or 6 months), palliative care resembles long-

term care rather than medical care.
The OECD, for instance, distinguishes nursing care and palliative care from
long-term care, even though it recognises that these services can be combined.133
Hence, strictly speaking, long-term care should be distinguished not only from
medical care, but also from nursing care and palliative care. Conversely, the
proposed new Slovenian legislation mentions palliative care among the services
provided for assistance with basic daily tasks of the beneficiary, and therewith as
long-term care.134
In any case, it seems that medical technical aids (orthopaedic, hearing and other
aids intended for home care, like special beds, sanitary medical equipment, etc.) are
excluded from the scope of long-term care benefits. Their purpose is to enable
normal functions of a human body, but without providing long-term care by way of
another person. Hence, it is this personal element that might be missing.135
Although long-term care insurance might also provide certain rehabilitation
services, especially in order to prevent a further reduction of one’s personal
autonomy (i.e. a kind of tertiary prevention),136 they may be provided only after
all forms of medical rehabilitation have been completed.137
There is also a distinction between medical care and nursing care provided at the
beneficiary’s home, and home long-term care, although they may all be provided in
the same environment. Again, it could be distinguished according to the person and
his or her specific skills of performing care, i.e. of a physician, a nurse or a provider
of long-term care services.
3.3.3 Delimitation from Invalidity
The distinction between reliance on long-term care and invalidity might be more
difficult. Invalidity is permanent (or at least of a longer duration, since medical
checks are possible also after established invalidity),138 inborn or inflicted, or
133
“LTC is defined as a range of services required by persons with a reduced degree of functional
capacity, physical or cognitive, and who are consequently dependent for an extended period of
time on help with basic activities of daily living (ADL). This “personal care” component is
frequently provided in combination with help with basic medical services such as “nursing care”
(help with wound dressing, pain management, medication, health monitoring), as well as preven-
tion, rehabilitation or services of palliative care. LTC services can also be combined with lower-
level care related to “domestic help” or help with instrumental activities of daily living (IADL).
Colombo et al. (2011).
134
Article 12 of the 2010 Proposal. According to the legislation proposed in 2017, palliative care
should be regulated in the new health care and health insurance act.
135
Article 17 of the 2010 Proposal also excludes medical technical aids.
136
Primary prevention means the prevention of diseases (also by way of immuno- and chemopro-
phylaxis); secondary rehabilitation means the early detection of diseases. More also about general
and special preventive measures Strban (2005), p. 187 ff.
137
138
Article 94 ZPIZ-2.
defined as a physical or mental disturbance in the functioning of a human body

which cannot be remedied through medical care or medical rehabilitation.139
Although both invalidity and reliance on long-term care are permanent (or -
longer-term) situations, a distinction between them can be made.
One of the most important distinctions might be that the purpose of invalidity
insurance (and other measures for persons with disabilities) is occupational reha-
bilitation and inclusion of the disabled in the (especially working) life of the
community. For the majority of persons relying on long-term care, especially for
the elderly who are no longer active on the labour market, this might be
irrelevant.140
Of course, invalidity could also mean full and permanent general or occupational
incapacity to perform (any) organised and gainful activity. In this case a more
permanent income replacement benefit (in the form of invalidity pension) would be
required. However, this does not presuppose that such person would at the same
time be reliant on long-term care from another person, even though, also in this
case, both social risks could materialise at the same time with the same person. In
this case both invalidity and long-term care benefits might be required.
3.3.4 Delimitation from Old Age
The social risk of reliance on long-term care can be distinguished also from the
social risk of old age. The latter may cause loss of income and the need for its
replacement. From a historical point of view, when a certain old age was reached,
invalidity was presumed. For instance, when the first modern social insurances for
old age were introduced in 1889 in Germany, retirement age was set at 70 years,
although the average life expectancy was only 58 years (and the average drawing of
a pension amounted to 2 years).141
Today, the retirement age is set as a product of social agreement regarding a
particular point in time from which economic activity in society is no longer
expected from an individual person. Retirement should be a happy, not sad occur-
rence in life.142 Therefore, a retired person could also in old age be completely
healthy and independent, not at all reliant on long-term care from another person.
Nevertheless, as old age progresses, a person might increasingly require consid-
erable and permanent assistance from another person to perform the basic activities
of daily living. In this case two social risks, i.e. old age and reliance on long-term
care, are combined in the same person.
139
140
Strban (2012c), p. 229.
141
Dawson (1912), p. 138. Hänlein A, Tennstedt F in: von Maydell et al. (2012), p. 70.
142
Igl (2007), p. 43 describes it as risque heureux.
446 G. Strban
3.3.5 Delimitation from Having a Family
The social risk of having a family with a view to the additional costs related to the
upbringing of children is also recognised in ILO Convention No. 102. It is defined
as a responsibility for the maintenance of children.143 Also the CJEU emphasises
that family benefits are those which are intended to meet the family expenses,
related to the upbringing of children. More particularly, they are aimed at remu-
nerating the service of bringing up a child, meeting other costs of caring for a child,
and possibly also mitigating the financial disadvantages entailed in giving up
income from full-time employment.144
The social risk of reliance long-term care can be combined with the social risk of
having children. However, in such cases specific additional costs might occur for
which there is a need for them to be covered by the social security system, either as
income replacement benefits or benefits in kind.
3.3.6 Delimitation from Assistance to Children in Schooling
Outside the scope of the social security system is the adjustment of kindergarten
and school programs for children who require special care. Additional professional
assistance in the form of assistance for the overcoming of shortcomings, obstacles
and distress, counselling services and study assistance, is also available. This has
been regulated in the new Guidance of Children with Special Needs Act (Zakon o
usmerjanju otrok s posebnimi potrebami, ZUOPP-1). which has been applicable as
of September 2013. In 2017 a special Act Regulating the Integrated Early Treat-
ment of Preschool Children with Special Needs (Zakon o celostni zgodnji obravnavi
predšolskih otrok s posebnimi potrebami - ZOPOPP) was passed. Both were
influenced also by the Optional Protocol to the UN Convention on the Rights of
Persons with Disabilities, the latter of which was ratified by Slovenia already in
2008.145
Children with special needs are defined as children with disorders in their mental
development, blind and weak-sighted children and children with impairments of
their visual functions, the deaf and hard-of-hearing children, children with speech
disorders, physically handicapped children with motoric impairments, long-term
sick children, children with deficiencies in certain learning areas (learning difficul-
ties), children with autistic disorders as well as children with behavioural and
personality disorders.146
According to the former Guidance of Children with Special Needs Act of 2000,
the competences regarding the assessment of special needs and the granting of
rights were transferred from the field of social services to the educational field. The
143
Article 40 of ILO Convention No. 102.
144
Decision in joined cases C-245/94 and C-312/94 Hoever and Zachow [1996] ECR I-4895.
145
Official Journal RS-MP, No. 10/2008.
146
Kresal B in: Kresal et al. (2016), p. 205.
responsible institution which decides about the guidance of children with special
needs is the National Education Institute of the Republic of Slovenia,147 within
which a guidance commission is formed as an interdisciplinary team of experts.
Among others, the ZUOPP-1 foresees that education according to programs with
adjusted implementation and additional professional assistance is provided by
public schools in regular departments. The purpose of the ZUOPP-1 is to adjust
the methods of education within a uniform school system to the requirements of
children with special needs. Educational standards should enable them to achieve
an equivalent educational standard within the primary, the vocational and the
secondary general education. Special programmes with lower educational standards
are adopted for children who are unable to cope with the regular educational
programmes.
The implementation of school programmes takes into account the type and
degree of disability. The organisation of schoolwork, the assessment of pupils
and their promotion, as well as timetables can be adapted accordingly. Children
with special needs can be given additional professional help which is carried out
individually and/or in the form of group work within or outside the child’s institu-
tion and class. If so required, additional help can be provided at the pupil’s home.
Children with special needs can also be granted a special personal assistant in cases
like physical disability, blindness, impairment of visual function, long-term sick-
ness, autistic disorders, if such support is required. Children with behavioural and
personality disorders can be given expert help in the form of pedagogical, social-
integrative, preventive, compensational and correctional programmes.
According to the statute of the respective university or any other institution of
higher education, students with special needs are provided with the special equip-
ment they require and adjusted examination rules.
Children with behavioural and personality disorders whose development is
endangered due to their condition, or who require special education in an institu-
tion, can be placed in an educational institution for children with special needs.
With the consent of the respective school, placement in the institution is decided
and followed by the competent centre for social work.
Programs of care and education required for guiding children with special needs
are explicitly excluded from the Proposed Legislative Act on Long-term Care and
Long-term Care Insurance.148
147
Zavod Republike Slovenije za šolstvo, www.zrss.si, October 2017.
148
Article 17 of the 2010 proposal.
448 G. Strban
4 Provision of Long-Term Care Benefits
One of the most sensitive topics related to the reliance on long-term care is the
provision of long-term care services. In this more procedural (than material) part of
long-term care law, the person reliant on long-term care and his/her (professional or
informal) caregiver meet and have to cooperate.
4.1 Organisation and Financing of Long-Term Care
4.1.1 Organisation
Long-term cash benefits are provided by the responsible institution and the financ-
ing follows the rules of a respected social security scheme. For instance, assistance
and attendance allowance to pensioners is provided by the PIIS. As a rule, it is
financed from pension and invalidity insurance contributions predominantly by
insured persons and their employers (but also by the State and other responsible
organisations, like the Employment Service of Slovenia for elderly unemployed
persons). Therefore, it could not be classified as a special non-contributory cash
benefit in the sense of social security coordination.149
Benefits from parental care insurance (prolonged parental leave and benefit, as
well as the right to work part-time) are, as other benefits from this insurance, only
partially financed from social insurance contributions. The majority of funds are
provided directly from the State budget. This is one of the reasons why there is no
special insurance carrier for this social insurance branch. It is managed by 62 local
centres for social work.
Entirely budget-financed and managed by the centres of social work are the
invalidity benefit, the care and assistance supplement for mentally and physically
disabled persons, as well as special family benefits (special childcare allowance and
partial payment for lost income) and assistance and attendance allowance for social
assistance recipients. Assistance and attendance allowance that is provided for war
invalids and war veterans is also State-financed, but managed by administrative
units of the state government.150
Non-acute nursing in general hospitals or in specialised nursing hospitals or spas
is organised within the network of healthcare providers and financed in terms of
hospital treatment151 (although it could also be financed in terms of treatment in a
149
Article 70 of Regulation (EC) 883/2004/EC.
150
Article 89 ZVojI, Art. 22 ZVV.
151
However, no DRG method is used to pay the providers, but the so-called hospital treatment days
are financed by the HIIS. Article 37 of the General Agreement between HIIS, the State and
healthcare providers for the contractual year 2013. Articles 13–15 of the Agreement for hospitals
for the contractual year 2008.
social care residential facility).152 Hospital treatment implies co-payments from

insured persons from 20% (for non-work related sickness) to 30% (for non-work
related injuries).153 However, co-payments to the full value of the respective
healthcare services are covered by the State for some groups of insured persons
(among them war invalids, social assistance recipients). Co-payments are waived
for urgent treatment of disabled (over 70%) and elderly persons (over 75 years of
age), if these persons have not contracted private supplementary health
insurance.154
There are no co-payments and medical care is financed in full by the HIIS for
beneficiaries of the residential social care arrangements, including residential
homes for the elderly. The same applies for nursing visits and medical care in the
home of the insured person.155 However, it is argued that home medical care is less
developed, especially in urban areas, where physicians rarely make home visits.156
This does not seem to apply for nursing home visits, which appear to be well
organised. Every primary medical care centre has a department for nursing at
home157 and there is an association of private nurses exercising this activity.158 It
includes care of persons with disabilities and chronically ill persons (but also
pregnant women and babies).
Social (care) services are provided on a non-for-profit basis within the public
service network, organised by the State and local communities, or outside of it. It is
even possible to provide it outside of the social care activities (like in schools,
hospitals or within the judiciary).159
Social services might be provided by juridical persons governed by public or
private law (in the latter case with the concession or authorisation of the ministry),
or natural persons (with a permit). Among the providers are public social care
institutes (centres for social work, residential homes for the elderly, special insti-
tutes for disabled adults, homes for children), other institutes (maternity homes,
housing groups, centres for independent living of disabled persons), voluntary and
non-for-profit organisations (established by individuals or religious communities,
organisations of disabled persons).160
The public network of home (long-term) care has to be organised by the local
community. Home care providers can be local centres for social work or other
providers, among them also residential homes for the elderly, and care and
152
Article 41.c ZSV.
153
There are no co-payments for accidents at work and occupational diseases. Strban
(2005), p. 209.
154
Article 25 ZZVZZ.
155
Article 23 ZZVZZ.
156
ZZZS (2013), p. 45.
157
E.g., Community Health Centre Ljubljana, www.zd-lj.si, October 2017.
158
E.g., http://patronaza.si/, October 2017.
159
Article 41a ZSV.
160
450 G. Strban
employment centres for persons with disabilities. Social servicing is performed

outside of the public service network, by juridical and natural persons with special
work permits.161 Residential care within the public service network is organised by
the State. It may be provided by residential homes for the elderly, special care
institutes for disabled adults or for children.
4.1.2 Financing
Social services are financed from many sources, like from the State or the local
community’s budgets, contributions of voluntary organisations, donations. How-
ever, the general rule is that social services have to be paid by the beneficiary (and
his or her family members). This was emphasised also by the Slovenian Constitu-
tional Court.162 The market rules are most explicitly expressed with regard to social
servicing. This also be provided by private (juridical or natural) persons for a
service fee, the latter of which might differ for similar services with different
providers. Fees have to be paid by the beneficiary or his family members.163
Nevertheless, many services are provided free of charge, among them all
counselling services. Payment for social services is waived for permanent social
assistance recipients and recipients of the invalidity benefit (according to
ZDVDTP), with the exception of residential care (also in residential homes for
the elderly), which still has to be paid.
But there is also a possibility to request from the centre for social work an
exemption from paying for social services (as a rule provided within the public
network), among them home care and residential care. It will be verified whether a
beneficiary and his or her family members are not able to pay for the requested
social service. If this is the case, the service is paid either by the State or by the local
community according to specific rules and regulations.164
The provision of a family assistant is paid by the local community. However, the
beneficiary has to allow payment of the assistance and attendance allowance
directly to the local community. In addition, the beneficiary and his/her family
members have to reimburse the local community for the payment of the family
assistant. Only if they are not able to do so will the local community have to finance
the difference from its budget.165
161
A full list of social servicing providers can be found at the internet site of the Ministry of
Labour, Family, Social Affairs and Equal Opportunities, www.mddsz.si, October 2017.
162
Decision in case U-I-150/05, 5 July 2005, SI:USRS:2007:U.I.150.05.
163
For instance, in Ljubljana social servicing was subsidised up to 60% of its value. This was
abolished in 2013. Žibret (2013).
164
Regulations on criteria for determining exemptions from the payment of social services
(Uredba o merilih za določanje oprostitev pri plačilih socialno varstvenih storitev), Official
Journal RS, No. 110/2004, last amended in 2015.
165
Article 18.a ZSV.
The legislative proposal on long-term care and long-term care insurance rests on
a very similar structure as regards long-term care providers, with minor distinctions
(for instance, a personal assistant instead of a family assistant is foreseen, who
should be financed from long-term care insurance). In addition, the inclusion of
volunteers in the provision of long-term care services would be possible. One of the
reasons is that volunteer work is being promoted also by a special Act on
Volunteering.166 The beneficiary would have to pay for the long-term care package
up to a certain amount, and only above this amount it would be financed from long-
term care insurance.167
4.2 Freedom of the Beneficiary to Choose the Most Suitable

Long-Term Care Arrangement
Persons reliant on long-term care may freely choose one of the assistance and
attendance allowances if an entitlement according to more legislative acts exists.168
They may also freely dispose of cash benefits. They may use them (next to their
own funds) to pay professional providers of long-term care services, to award
family members who provide long-term care, to use it for any other purpose, or
to save them for the future.
Cash benefits are not provided as a kind of a long-term care budget in cases
where cash benefit would have to be spent on long-term care and the beneficiary
would just have the option to choose the most suitable provider. Essentially, such
benefits could better be qualified as long-term care benefits in kind.169
As for benefits in kind from the mandatory health insurance, the insured person
has a right to freely opt for the physician and healthcare provider of his choice
(primary health centre or a hospital). This also goes for nursing at home and in
hospital or spa departments where medically non-acute care is provided, as well as
for care provided in nursing hospitals. It is important that this right is granted to an
insured person, since it implies the duty of a health-care provider to accept such an
insured person.170
166
Volunteering Act (Zakon o prostovoljstvu - ZProst), Official Journal RS 10/2011, last amended
in 2015.
167
In Article 30 of the 2010 Proposal the amount of 230 Euro is mentioned.
168
E.g., Article 104 ZPIZ-2 or Article 83 ZVojI.
169
Cases C-208/07 von Chamier-Glisczinski EU:C:2009:455 and C-466/04 Acereda Herrera EU:
C:2006:405. See also Decision of the Administrative Commission for the Coordination of Social
Security Systems No. S5 of 2 October 2009 on the interpretation of the concept of benefits in kind
as defined in Article 1(va) of Regulation (EC) No. 883/2004 of the European Parliament and of the
Council in the event of sickness or maternity pursuant to Articles 17, 19, 20, 22, 24(1), 25, 26, 27
(1, 3, 4 and 5), 28, 34 and 36(1 and 2) of Regulation (EC) No. 883/2004 and on the calculation of
the amounts to be refunded under Articles 62, 63 and 64 of Regulation (EC) No. 987/2009 of the
European Parliament and of the Council, OJ C 106, 24 April 2010, p. 54.
170
Only under specific circumstances might an insured person be rejected (e.g., if there is no
available place in a hospital). Strban (2005), p. 255.
452 G. Strban
If an insured person is determined to claim long-term care benefits from a

specific provider, it can hardly be argued that the waiting time is too long (consid-
ering that there are services available with other providers in the State), and a
person will have to assume some responsibility for waiting. The argument of
excessively long waiting lists for medically non-acute (long-term care) services
may not either be used to claim such services in another EU Member State (or EEA
State or Switzerland) outside of coordination rules. Directive 2011/24/EU on the
application of patients’ rights in cross-border healthcare171 expressly excludes
long-term care services from its scope.172 It appears that the CJEU is also rather
reluctant to apply the Treaty provisions on the free movement of services in the
field of long-term care.173
Among the basic principles of social (care) services provision are the principles of
equal access and free choice of services.174 This is also in line with the revised
European Social Charter of the Council of Europe.175 It is emphasised that every
elderly person has the right to social protection.176 With a view to ensuring the
effective exercise of this right, the Member States have to adopt or encourage
(directly or by way of public-private partnerships) appropriate measures to enable
elderly persons to remain full members of society for as long as possible. They have
to provide sufficient resources and full information on the services and facilities for
elderly persons, which obviously includes information on long-term care services and
facilities. Only then is a beneficiary enabled to make an informed choice. The revised
Charter also emphasises that elderly persons have the right to freely choose their life-
style and to lead independent lives in their familiar surroundings for as long as they
wish and are able to (also by adapting housing and home care services).177
If elderly persons permanently stay in residential care, they should be supported,
their privacy observed and participation in decisions concerning living conditions
enabled.178 Also, according to Slovenian law all long-term care providers have to
respect the personal integrity and dignity of a beneficiary and his/her data privacy.
Beneficiaries with full capacity to act legally have to decide by themselves whether
they require social (long-term care) services, and they have the right to choose the
one they deem most appropriate. For instance, they may decide on a particular
home care, social servicing or residential care provider of their own choice.179
171
OJ L 88, 4 April 2011, p. 45. See also Strban (2013), p. 391.
172
Article 1 Directive 2011/24/EU.
173
Case C-562/10 Commission v Germany, EU:C:2012:442.
174
Article 4 ZSV.
175
Slovenia has ratified the revised European Social Charter, Official Journal RS-MP, No. 7/1999.
176
Point 23 (First Part) of the revised Charter.
177
Article 23 (Second Part) of the revised Charter.
178
Ibid.
179
4.3 Cooperation Between a Beneficiary and Long-Term Care

Providers
Undisputably, it is only if a beneficiary can choose the preferred long-term care

arrangement and if there is a bond of trust and good cooperation between the person
reliant on long-term care and the provider of long-term care services that such
provision can be effective.
As a rule, the expert (invalidity or medical) commission deciding on the need for
long-term care benefits will have to cooperate with the person reliant on long-term
care. This is even more expressed in the proposed new legislation on long-term care
and long-term care insurance.180
Provision of various long-term care services, encompassing nursing care, home
care, social servicing, (semi- or full) residential care, has to be coordinated.
According to the proposal of the new legislative act, coordinators of long-term
care shall officially be introduced. They would have to be knowledgeable about and
experienced in long-term care. It should be an employee of the health and long-term
care insurance institute (today HIIS). The latter would have to organise a network of
coordinators in order to guarantee equal access to all insured persons. The main task
of a coordinator would be to cooperate with the beneficiary in creating an individual
long-term care plan and monitoring its execution. In addition, he/she would offer
assistance with the provision of proper medical (nursing) and social care in the
transitional period from a hospital stay to adjusted living at home or in a residential
facility, present all possible forms of long-term care services to the beneficiary, so
that the latter could make a fully informed choice.
Already under the present legislation, the chosen social service is, as a rule,
claimed directly from the provider by the beneficiary or his/her legal representative,
in exceptional cases by the centre for social work ex officio. An initiative for
commencing an ex officio proceeding can also be expressed by any other person,
e.g. by the marital or cohabitating partner and children of the beneficiary. Never-
theless, the service provider has to endeavour to conclude an agreement with the
beneficiary on the duration, type and scope of service. As a rule no service is
possible without consent of the beneficiary. Written consent is also required for
psychiatric services in the community (community psychiatry).181 Agreement is
also required for the provision of other services, and it is the legal basis for
placement in a residential facility.182
Special procedural rules apply for the beneficiary’s accommodation in, transfer
to and discharge from a residential facility, also with regard to facilities providing
180
181
Article 91 ZDZdr.
182
454 G. Strban
long-term care.183 The request should be lodged on a specified form (which should
make the proceedings less, not more complicated for the beneficiary), which has to
be signed by the applicant. It has, for several years, also been possible to lodge the
application over the internet or via electronic mail, which makes cooperation and
communication between the beneficiary and the provider easier.184 Application at
more than one residential facility is allowed, but the preferred one should be clearly
marked. Only under exceptional circumstances can an application be sent by a
spouse, parents, children or other persons authorised by the beneficiary. However,
before the actual arrangement is accepted, it has to be signed by the beneficiary
(or his/her legal representative if the beneficiary has no capacity to act).
It would be illegal if the beneficiary was placed in a facility without consent
(or without consent of the legal representative) or if his/her freedom of movement
within the residential facility was limited. Under certain circumstances, such act
could constitute a criminal offence against an (involuntary) beneficiary.185 There-
fore good cooperation is of essential importance.
4.4 Inclusion of Family Members and Quality Control

Mechanisms
4.4.1 Priority of Professional or Informal Care?
One of the fundamental questions of long-term care services provision is who should
be the primarily responsible caregiver. Should long-term care primarily be exercised
informally, by family members of the beneficiary, or should professional provision be
supported? The related question regards quality control mechanisms: which are
easiest to implement in the context of professional long-term care provision?
It seems that family members are still the largest providers of long-term care in
many countries, despite changing family structures.186 It might be argued that
benefits in cash, if there is no obligation to spend them on (professional) care,
may promote informal (family) caregiving. On the contrary, if benefits in kind are
promoted, or a long-term care budget is foreseen (which has to be spent on long-
term care, making it essentially a benefit in kind), it might promote the professional
delivery of long-term care.187
183
Rules on the procedures for exercising the right to institutional care (Pravilnik o postopkih pri
uveljavljanju pravice do institucionalnega varstva), Official Journal RS, No. 38/2004, as last
amended by 4/2014.
184
On the internet site of the Association of Social Institutes of Slovenia, https://servis.ssz-slo.si/
Prosnje/, October 2017.
185
186
Büschner and Schnepp (2011), p. 469.
187
Strban (2012a), p. 267.
In countries where only benefits in cash are provided, covering only part of the
increased costs of long-term care, it is expected that family members are given
priority with regard to providing long-term care.188 In some countries, priority is
given to home care over institutional care. In Germany, for instance, the legislator
explicitly emphasised the intent to support the readiness of family members and
neighbours to provide long-term care at the beneficiaries’ home.189 Such care is
usually provided with great personal sacrifice, also due to changed family
structures.190
In Slovenia, family members play an important role in providing long-term care.
In the new pension and invalidity insurance, the legislator presumes the responsi-
bility of family members, since assistance and attendance allowance is higher if a
pensioner requires 24-hour assistance; the care may be provided by family mem-
bers and/or professional assistance.191
Special family benefits (special childcare allowance and partial payment for lost
income) can, as a rule, be claimed only by one parent of a child reliant on long-term
care. When such child reaches the age of majority, he/she has the right to a family
assistance, which has to be a person with the same permanent residence as the
beneficiary or one of the family members (if they do not already have the same
permanent place of residence). The question might be: what defines a family
member? A family assistant could be not only one of the closer family members
(like a spouse or a partner or a child), but also a sibling, a grandparent, an uncle or
an aunt.192
Also in the proposed new Slovenian legislation, the family members’ role is
emphasised. For instance, the long-term care commission should also cooperate
with the family members of the beneficiary. However, for performing long-term
care, the use of professional providers is encouraged. For instance, a person reliant
on long-term care should have the right to a personal assistant who is not neces-
sarily a family member, instead of making permanent use of a family assistant (as it
is currently mainly the case).193
The question might also be: what is the purpose of lower cash benefits194 which
do not amount to the same level as a package of long-term care services? It could be
assumed that, also due to the lack of residential facilities, lack of personal assistants
188
For instance, if the goal of care allowance could not be achieved, in Austria the benefit in kind
might be granted instead. Greifeneder and Liebhart (2008), p. 68. It seems that also Flemish care
insurance (Zorgverzekering) provides only cash benefits (www.missoc.org, October 2017).
189
Paras. 3 and 4 SGB XI. The notion of informal caregiver (Pflegeperson) is defined in Para.
19 SGB XI.
190
Peters, K, op. cit., Para 3 SGB XI, p. 1.
191
Article 103 ZPIZ-2.
192
Article 18c ZSV.
193
Article 83 of the 2010 Proposal. See also new Personal Assistance Act (Zakon o osebni asistenci
- ZOA) from 2017.
194
The cash benefit should amount to 40 per cent of the long-term care services package. Article
34 of the 2010 Proposal.
456 G. Strban
and high costs of long-term care services, it is still family members that will be
primarily called upon to provide long-term care. But, if (or better when) all the
foreseen long-term care arrangements will be in place, lower cash benefit might
also be a measure to stimulate the provision of long-term care benefits in kind,
provided predominantly by professionals.195 In the proposed new Slovenian legis-
lation it is foreseen that a cash benefit should be used to pay for long-term care
services. If this is not the case, the cash benefit might be terminated.196
4.4.2 Mechanisms to Improve the Quality of Care
If long-term care is to be provided by professionals, it is easier to introduce quality

standards and monitor them. Formalised ways of appeal could be established, and
competence be given to a specialised social inspection entity, in Slovenia in the
form of an organisational unit of the Labour Inspectorate at the Ministry of Labour,
Family, Social Affairs and Equal Opportunities.197 The latter might arrange for an
improvement of quality according to the prescribed standard, for the provider to
apologise to the beneficiary, if required, and for a potential withdrawal of the work
permit, or cancellation of the concession contract for private long-term care pro-
viders, or banning of their exercising social care activities.198
The social inspection entity has no competence to monitor non-professional
care, which means mainly long-term care provided by family members. If long-
term care is mainly left to the family, the supervision and quality of care delivery is
rather difficult to guarantee. Therefore, other mechanisms have to be installed. For
instance, the Invalidity Commission of the PIIS assesses not only whether a
disabled person requires a family assistant, but also if the chosen assistant can
offer the required long-term care.199 The same is foreseen for personal assistants
according to the proposed new legislation.200
195
For instance also in Spain priority is given to benefits in kind, and the delivery of long-term care
is primarily seen as the task of the State and not the family. Although cash benefits to the family are
an exception and there should be no incentive to leave or to not take up economic activity, there
should be no illusion that home care does not exist anymore. Public institutions providing long-
term care are clearly given the priority, but it seems that often the necessary infrastructure is not
yet in place. In addition, in some parts of Spain unemployment is rather high and any income for
caregiving family members is welcome. Hence, despite the good intentions of the legislator, it
might happen that (at least in less developed parts of Spain) the provision of care to family
members will remain the “profession” of women mainly. Reinhard (2008), p. 231.
196
197
http://www.id.gov.si/si/o_inspektoratu/organizacija_inspektorata_rs_za_delo/socialna_
inspekcija/, October 2017.
198
According to Articles 102 ff. ZSV and the Rules on Carrying out Inspections in the Field of
Social Care (Pravilnik o izvajanju inšpekcijskega nadzora na področju socialnega varstva),
Official Journal RS, No. 74/2004.
199
Article 18f ZSV.
200
Artcle 111 of the 2010 Proposal. See also the new ZOA.
It is also foreseen that non-professional long-term care providers will have to

participate in proper training programs, in order to acquire the necessary knowledge
and skills according to the individual long-term care plan. Also volunteers will have
to attend proper training. It is a bit more difficult to impose such training to family
members as a duty. Nevertheless, they should be entitled to counselling and
training/education services before and during their involvement in long-term care.
In addition, non-professional carers should not be allowed to charge for their care
services.201
4.4.3 Reliance on Long-Term Care: Double Social Risk?
The question is whether reliance on long-term care could actually present a double
social risk, i.e. for the person reliant on long-term care and a family member giving
such care. As a rule, long-term care is provided by a woman (a wife or a cohabiting
partner or a daughter between 40 and 60 or even 70 years of age).202 This might lead
to an indirect discrimination of women. They are expected to diminish their
economic activity or even leave the labour market in order to provide long-term
care. The question might be as to how broadly the duty to maintain is regulated in
family law. It might exist only within the nuclear family (among spouses, parents
and their minor children), or the broader family (also among adult children and their
parents, grandchildren and grandparents or among siblings).
In Slovenia, although disputed, there is a duty of adult children to maintain their
parents, unless the parents did not exercise their duty towards their children (when
they were minors). The question may be how this duty can be fulfilled. There are
several possibilities, ranging from maintenance in kind, living in a common house-
hold (and also providing long-term care), to (financial) assistance if professional
long-term care is provided (if it could otherwise not be covered by social insurance
and the parents would not have sufficient means).203
It is argued that the care potential of family members is diminishing and they
should not only be supported (under labour law by way of care leave periods, direct
payments or special cash benefits, coverage by social insurance schemes, tax
benefits and residual care) but disburdened. The majority of care activities should
be taken over by professional organisations and individuals providing home and
(semi-) residential care.204 Of course, it could be wrong to expect family members
to not play a significant role in providing long-term care in the future. They will
always “care” for their family members who will be reliant on care provided
through another person. The bond of intimacy and close relations will always
connect them, maybe even on a more equal footing if long-term care is provided
by professionals.
201
Articles 74 and 98 of the 2010 Proposal.
202
On the situation in Germany Büschner and Schnepp (2011), pp. 474, 476.
203
Strban (2012c), p. 231.
204
Strban (2012a), p. 269. See also Becker and Laurer (2011), p. 121.
458 G. Strban
5 Concluding Thoughts
When the first modern social insurances were introduced on Slovenian territory,
reliance on care was not a common social phenomenon. With an aging population
(Slovenia being no exception in this respect), the need for long-term care is
growing. It has outgrown the individual risk and become a social risk. An aging
population is not necessarily something negative. It is great to know that we
(on average) live longer. However, longer living may bereave an individual of
the capacity to autonomously perform the basic activities of daily living. Social
intervention may be required.
It would be rather difficult to classify the reliance on care as a completely new
social risk. Although in Slovenia no special long-term care insurance scheme has
been introduced yet, there is a complex range of nursing and long-term care benefits
in cash and in kind that can be provided to a person reliant on long-term care. It
could be argued that it is a mixed system of long-term care, since benefits range
from social insurance to social assistance and social compensation schemes.
It is necessary to classify reliance on long-term care as an independent social
risk, one that could be closely linked to other social risks, like sickness, invalidity,
having a family and predominantly old age. It is no longer possible to provide
effective long-term care otherwise.
The beneficiary has a vast field of (free) choice of all available benefits in cash
and in kind. Still, long-term care is usually provided by the beneficiary’s family.
Informal care might be promoted and supported by providing (low) cash allowances
or (pension) supplements. However, it might turn out that reliance on care is
actually a double social risk. It is not only the person reliant on care whose
existence and free development is endangered, but also the existence and free
development of caregiving family members might be at risk.
Therefore, it is argued that in Slovenian legislation the reliance on long-term
care should be recognised as an independent social risk and long-term care benefits
should be provided in a more transparent and effective manner. Quality mecha-
nisms have to be installed for professional and informal caregivers. They should
enable the decent living of the person reliant on care (in his/her home environment,
if so desired) and not overburden the lives of informal carers (especially women).
Professional, interdisciplinary and coordinated nursing and long-term care could
provide the best results with a view to care for our elderly.
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Social Protection Against the Risk of
Long-Term Care Dependency in Spain
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 462
2 Social Protection Against the Risk of Long-Term Care Dependency Prior
to the Adoption of Law No. 39/2006 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 464
3 Social Protection Against the Risk of Long-Term Care Dependency Pursuant to Law
No. 39/2006 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 466
3.1 History of the Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 466
3.2 Aim of the Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 467
3.3 Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 467
3.4 Principles of Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 471
3.5 Rights and Obligations of Dependant Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 471
3.6 Entitled Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 471
3.7 Level of Protection and Organisation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 473
3.8 Benefits and Services Granted According to the Degree of Long-Term Care
Dependency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 473
3.8.1 Benefits in Kind (Services) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 473
3.8.2 Cash Benefits (Prestaciones económicas) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 475
3.9 Assessing the Degree of Long-Term Care Dependency . . . . . . . . . . . . . . . . . . . . . . . . . . . 478
3.10 Services and Benefits in Detail . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 480
3.10.1 Services Directed Towards Prevention and Personal Autonomy . . . . . . . 480
3.10.2 Services Directed Towards Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 480
3.10.3 Services Directed Towards the Promotion of Personal Autonomy . . . . . 481
3.10.4 Services Concerning Home Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 481
3.10.5 Services Concerning External Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 481
3.10.6 Day-Care/Night-Care Centres (centros de dı́a/noche) . . . . . . . . . . . . . . . . . . . 482
3.10.7 Residential Care (atención residencial) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 482
3.10.8 Financial Support Granted for Service Provision . . . . . . . . . . . . . . . . . . . . . . . . 482
3.10.9 Financial Support for Personal Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 482
3.10.10 Financial Benefits Granted for Long-Term Care Provided in the Family
Setting and for Supporting Non-professional Caregivers . . . . . . . . . . . . . . . 483
3.11 Applications and Resolutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 483
3.12 Non Professional Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 483
3.13 Financing of Benefits and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 488
H.-J. Reinhard (*)


https://doi.org/10.1007/978-3-319-70081-6_12
462 H.-J. Reinhard
4 Securing Long-Term Care in Times of Financial Crisis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 488

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 490
1 Introduction
In Spain, a law on social protection1 against the risk of long-term care dependency
was adopted at the end of 2006.2 The adoption built on a lively, but by no means
controversial debate. The need for regulation and urgent action had been pointed
out by an in-depth study commissioned by the Government (Libro Blanco).3 In
2003, Congress adopted the renovation of the so-called Pacto de Toledo of 1995, an
agreement between Trade Unions, Employers’ Associations and Government for
future social policies. An additional recommendation was passed saying that. “it is
necessary to create an integrated system that takes into account the global
phenomenon.
Securing the risk of long-term care dependency has been discussed since the end
of the 1990s,4 with no serious doubts having being expressed by any of the parties
involved about the need to introduce a long-term care insurance system. On the one
hand, long-term care insurance had already been introduced in a number of coun-
tries, as in Germany in 1995, and it was well known that the demographic problems
would also reach Spain, albeit with some delay. On the other hand, it has been
established in the Spanish law on social insurance5 since 1963 that the State has an
obligation to cover the full range of social risks for the entire population. Following
democratisation, this principle was incorporated into the Constitution6 and a cata-
logue of social rights was introduced. Although these rights are only of a program-
matic nature, they exercise a certain political pressure on the parties involved for
them to seek to cover social needs.
The political discussion about long-term care insurance particularly revolved
around the question as to the distribution of competences between the Central
Government and the Autonomous Communities regarding implementation and
financing, as well as around the alternative of monetary benefits versus benefits in
kind. Spain is divided into 17 Autonomous Communities with wide-ranging legis-
lative and organisational powers. The municipalities of Ceuta and Melilla on the
African coast also belong to Spain. According to the Constitution they are,
1
Ley 39/2006, de 14 diciembre, sobre Promoción de la Autonomı́a Personal y Atención a las
personas en situación de dependencia; BOE núm. 299, de 15 de diciembre de 2006, última
modificación: 28 de junio 2017; (Blasco Lahoz 2014).
2
Sempere Navarro and Cavas Martı́nez (2007); Sempere Navarro and Charro Baena (2008).
3
Ministerio de Trabajo y Asuntos Sociales (2004, 2005).
4
Casado Marı́n and López i Casanovas (2001) and Fundación BBVA (2006).
5
Ley 193/1963, of 28.12., de diciembre, sobre Bases de la Seguridad Social (LBSS).
6
Spanish Constitution (Constitución Espa~
nola, C.E.) of 27.12.1978.
Social Protection Against the Risk of Long-Term Care Dependency in Spain 463
however, not part of the Autonomous Communities, but have comparable compe-
tences in certain areas. A comprehensive study7 extensively discussed the individ-
ual aspects and carefully examined the models already existing in other countries.
The result represented a compromise between the interests of the Central Govern-
ment and those of the 17 Autonomous Communities. The Central Government
provides the financial backing for a basic protection. A further portion of the basic
protection is financed on equal terms by the Central Government and the Autono-
mous Communities. In addition, the Autonomous Communities are free to offer
further supplementary benefits and services.
The motive for the law was the increasing ageing population and hence the rising
number of older persons depending on long-term care.8 Like in the northern
countries of the European Union, family structures are also changing in Spain.
They are by no means as stable as they used to be. Admittedly, the majority of
elderly persons or of those in need of long-term care are still provided care at home.
Especially in the rural regions and particularly in the less industrialised parts of
southern and western Spain, the family continues to be the centre of life. But it is
especially in these poorer areas that family structures have altered due to migration.
Due to the lower level of industrialisation and the predominance of seasonal
farming activities, the unemployment rate used to be very high in these regions
from the 1950s to the 1970s and is still considerably higher than the Spanish
average today. Migration from these areas is significantly high, partly in the form
of internal migration towards the large centres of Madrid and Barcelona, partly in
the form of emigration to Central and Northern Europe. As a result of these
migratory flows, the proportion of the remaining elderly and very old population
is exceedingly high. In some villages all remaining inhabitants are pensioners, and
the younger people at best only come back for festivities or during the summer
holidays. Decades of emigration have created an additional problem. After a great
many years in a foreign country, many of the returnees want to spend the rest of
their days in their home country, a fact which again increases the average age in the
villages.9
But there is also the reverse problem. About 500,000 retired foreigners from
Northern Europe have chosen the warm Spanish climate to spend their old days.
The majority of some 200,000 persons are of British origin, some 20% are
Germans. Other bigger colonies are composed of Swedish, Norwegian, Danish or
Austrian nationals.10 Some of them have cut all links to their country of origin. If
they become sick or frail they attend the Spanish health system or they need care
from the Spanish care system. The country of origin does not always reimburse the
costs so that in the end the Spanish taxpayer has to pay the bill.
7
Ministerio de Trabajo y Asuntos Sociales (2004), Baviera Puig (2008).
8
On the situation of the elderly, cf. Observatorio de personas mayores (2002).
9
A typical example is ECJ decision C-388/09 of 30 June 2011 in the da Silva Martins case, which
refers to the neighbouring country Portugal but might relate to Spain as well.
10
http://qualivir.com/es/2016/07/12/foreign-retirees-coming-spain.
464 H.-J. Reinhard
A special feature in Spain is that almost 80% of the Spanish live in their own
homes.11 Renting accommodation is unpopular and is at best considered a tempo-
rary solution for young people before purchasing an apartment. The purchasing of
residential accommodation was long promoted by the Government through social
housing programmes (vivienda de protección oficial) or cheaper mortgages. Fur-
thermore, rents were practically frozen during the Franco era so that in some cases
the same rent was paid for 40 or 50 years, a fact which culminated in a lack of
investment and obsolete building structures. Mobility is therefore very limited,
meaning that many older persons may have lived in the same dwelling since they
were born or married, with the apartments being hardly adaptable to the new
circumstances resulting from long-term care dependency. However, since the
financial crisis state subsidies and tax advantages have disappeared12 and many
people cannot afford anymore to aquire an accommodation of their own.
2 Social Protection Against the Risk of Long-Term Care

Dependency Prior to the Adoption of Law No. 39/2006
Prior to the adoption of Law No. 39/2006, protection against the risk of long-term
care dependency only existed in rudimentary form.13 Persons who had been granted
the status of “gran invalidez” (major invalidity) and who needed help with activities
of daily living from another person could be granted a supplement of 50% on their
pension.14 What was problematic was that the supplement was calculated on a
percentage basis and not according to the degree of long-term care dependency.
Persons with low pensions therefore only received small additional amounts. The
additional amount was intended to provide remuneration for the services rendered
by the caregiver (mostly female family members). As the amount was paid together
with the invalidity pension, it was ultimately up to the person in need of long-term
care to decide whether and to what extent the caregiver should participate. For the
individual the coverage of health care was guaranteed, as a person resident in Spain
can draw on the benefits and services of the general health care service. But it did
not imply any further social protection, e.g. under pension or unemployment
insurance. This constituted a major problem for persons who gave up paid employ-
ment to provide care to a family member, as an old-age pension, even after long
periods of contribution, is only paid if insurance contributions have been paid for at
least 2 years during the last 8 years before the pension claim materialised (with the
11
http://ec.europa.eu/eurostat/statistics-explained/index.php/File:Distribution_of_population_by_
tenure_status,_2015_(%25_of_population)_YB17.png.
12
http://www.eleconomista.es/construccion-inmobiliario/noticias/8345409/05/17/La-vivienda-
de-proteccion-oficial-desaparece-en-Espana.html.
13
Maldonado Molina (2003) and Doncel Fernández and Gutierrez Barbarrusa (2005).
14
Ministerio de Trabajo y Asuntos Sociales (2004), p 118.
retirement age generally being 65 years for both sexes, now gradually increasing to
age 67). Otherwise the claim to an old age pension expires without substitution.15
For gainfully employed persons the age of 57–65 (or 59–67 respectively)16 is,
however, frequently the age when geriatric long-term care has to be provided to
parents or parents-in-law, who are generally 20–30 years older and hence
truly aged.
A further problem associated with the additional amount of 50% was that an
entitlement to a invalidity pension had to exist, i.e. that the person now in need of
long-term care priorly had to be gainfully employed and subject to mandatory
insurance to an adequate extent. If this was not the case, only non-contributory
benefits could be applied for (prestaciones no contributivas). In terms of functions
and conditions, these benefits correspond to the German basic provision granted in
the event of old age and invalidity pursuant to SGB (German Social Code XII), yet
with income limits being significantly lower. Under the non-contributory system,
too, an additional amount of 50% was provided in the event of “major invalidity”.
This amount was, however, very small due to the existing basic level of benefits.
As an alternative to being paid the additional amount of 50% the person
concerned could use the services of an inpatient facility belonging to the
“Seguridad Social” to receive long-term care. As, however, invalidity benefits
were no longer provided once the age limit was reached, older persons in need of
long-term care17 and, indirectly, their caregivers remained excluded from these
benefits.
Caregivers are provided a minimum protection via social insurance law through
benefits granted for family members (prestación en favor de familiares).18 Children
or brothers and sisters of a person in need of long-term care who had regularly
provided long-term care to an old-age or invalidity pensioner and who were
financially dependent on him, can be granted a benefit for family members provided
that they are at least 45 years old and that they lack personal financial resources. In
view of these prerequisites and the restriction to a small group of relatives, this kind
of benefit, which amounts to 75% of the minimum wage, is of minor importance.
According to the statistics of the Labour Ministry there were only 37,500 benefit
recipients in February 2009, with the number of beneficiaries showing a strong
downward trend.
Some Autonomous Communities had already established social services and
some had transferred the competences for care services to the municipalities.19 The
scope of benefits and legel entitlement depended very much on the respective
political entity. But there was no consistent system of national legel regulations
15
On this regulation affecting women in particular, cf. Reinhard (2007), pp. 197–201.
16
Art. 205 LGSS, Real Decreto Legislativo 8/2015, of 30.10., por el que se aprueba el texto
refundido de la Ley General de la Seguridad Social.
17
Sánchez-Rodas Navarro (1999).
18
Art. 176.2 LGSS.
19
Ministerio de Trabajo (2004), pp. 111–112; Cermi (2009); Dı́az Calvarro (2014).
466 H.-J. Reinhard
that entitled all Spanish people to adequate benefits in case they needed long term
care. The aim of social politics was to use the existing structures and to extend them
on the entire population.
3 Social Protection Against the Risk of Long-Term Care

Dependency Pursuant to Law No. 39/2006
3.1 History of the Law
The competent Ministry elaborated in a White Book20 a very comprehensive and

comparative study before proposing the new law. With the adoption of Law
No. 39/2006, the so-called System of Personal Autonomy and Care of Dependent
Adults (Sistema para la Autonomı́a y Atención a la Dependencia—SAAD) was
created. Although this system belongs to the social protection system (Sistema de
Protección Social) it does not belong to the actual institutional social security system
(Sistema de Seguridad Social). This differentiation and separation was necessary for
constitutional reasons. According to the constitution the central state is responsible
for social security whereas the respective Statutes of the Autonomous Communities
hold the competence for social services. This legal distinction made the Autonomous
Communities participate in the financing, as otherwise the Central Government
would have had to bear the entire financial costs of the new law.
A further reason in favour of this model was that the SAAD could build on the
existing health care and social services structures, which have long been
decentralised. Some of the long-term care benefits and services had already been
provided by the authorities of the “Comunidades Autónomas” and the local admin-
istrations (administración local) with different levels of intensity before the new
law was adopted. They were supplemented by cooperating providers (entidades
concertadas), private providers (particularly in the field of inpatient facilities) and
the above-mentioned benefits and services provided by the “Seguridad Social” of
the Central Government.
In fact, the legislator wanted to create something new with the introduction of
social protection against the risk of long-term care dependency, yet the result was
rather a coordination and simplification of already existing structures. Finally,
17 subsystems for the Autonomous Communities plus 2 subsystems for the auton-
omous cities Ceuta and Melilla on the African coast have been created which are
being expanded with differing intensity. This legal fragmentation was the price to
pay for avoiding the integration of the new system into the existing organisation of
the “Seguridad Social” and the jeopardising of the adoption of the legal project as a
whole. Now, the central state guarantees according to the constitution21 for reasons
20
Ministerio de Trabajo (2004), Alonso-Olea Garcı́a (2008), Alonso-Olea Garcı́a et al. (2009), and
Fernández Orrico (2008).
21
Art. 149.1 C.E.
of equality basic benefits. In the scope of their competence for social assistance22
the Autonomous Communities are obliged to create a comprehensive system for
care, namely to provide benfits in kind.
When the law was conceived, the legislator expressly emphasised that, as also
expressed in the preamble, securing long-term care was primarily the task of the
State and not of the family. Basically, long-term care shall be provided to the person
in need of care through a network of professional outpatient, partially inpatient, and
fully inpatient assistance. According to the legislator, paying cash benefits to family
caregivers shall remain an exception.23
Despite this exceptional regulation one should not be deluded into thinking that
home care no longer exists in Spain. True, public facilities have to be given priority,
but the suitable infrastructure is often lacking. The law was not implemented
throughout the country with the same intensity. Some of the “Comunidades
Autónomas” lag behind, and this partly for financial, partly for political and partly
for staff reasons. In an investigation of the “Asociación Estatal de Directores y
Gerentes de Servicios Sociales” (State Association of the Directors and Managers
of the Social Services) the implementation was assessed according to a 10-score-
scale. While Castilla y León (8.5), Andalusia (8), Aragón and the Basque Country
(7.5 out of 10 points each) were leading, the law was only insufficiently
implemented in the Canary Islands, Valencia, Madrid (2.5 points each) and Murcia
(1.5 out of 10 points). The Balearic Islands (4) und Catalonia (5 out of 10 points)
were slightly below average.24 Although the situation has improved there is still a
discrepancy in coverage with social services among the Autonomous Communities
(Tables 1 and 2).
3.2 Aim of the Law
The law defines its objectives.25 National institutions and institutions of the Auton-
omous Communities shall cooperate to create and maintain a coherent system of
long-term care.
3.3 Definitions
The law stipulates some principal definitions on autonomy and dependency26:
22
Art. 148.1.20 C.E; Arranz de Andrés and Ruiz de Velasco Punı́n (2017) and Martı́n Jiménez
(2008).
23
Art. 14, 18 Ley 39/2006.
24
El Paı́s 12.3.2009, p. 30 Fundación Democracia y Gobierno Local (2010).
25
Art, 1 Ley 39/2006; Moreno Vida et al. (2014).
26
Art. 2. 1-8 Ley 39/2006; Garcı́a Maestro Garcı́a (2015) and González Ortega (2010).
Table 1 Basic net of social services (2014)a
468
Persons
Ratio users Coverage using basic
per of Coverage in Social Inhabitants benefit
inhabitants Inhabitants population municipalities service Financial per (Prestación Expenditure per
A.C. (%) covered (%) (%) centres resources Expenditures Employees employee Basica) user for benefits
Andalucı́a 12.08 8,440,300 100.00 100.00 245 503,865,394.40 € 503,471,487.09 € 27,761 304 1,468,976 405,014,991.95 €
Aragón 10.92 758,380 56.30 2.87 6 13,250,326.10 € 13,250,326.10 € 208 3646 105,082 5,733,988.40 €
Asturias, 3.38 1,068,165 100.00 100.00 41 48,683,714.26 € 48,050,930.59 € 1863 573 56,557 22,099,269.96 €
Princi-
pado de
Balears, 7.25 1,111,674 100.00 100.00 55 50,095,877.13 € 50,095,877.13 € 994 1118 91,998 20,157,723.16 €
Illes
Canarias 17.37 2,118,679 100.00 100.00 88 61,815,394.26 € 61,592,460.00 € 1955 1084 830,034 25,798,070.22 €
Cantabria 25.42 591,888 100.00 100.00 31 25,624,539.87 € 25,624,539.87 € 236 2508 939,574 15,826,530.63 €
Castilla y 23.55 2,519,875 100.00 100.00 29 122,445,676.83 € 122,445,676.83 € 6133 411 593,539 65,469,222.50 €
León
Castilla- 22.05 1,499,155 71.35 10.77 97 11,604,814.16 € 11,372,588.85 € 468 3203 502,216 0.00 €
La
Mancha
Catalu~na 12.23 7,553,650 100.00 100.00 103 213,742,883.51 € 213,742,883.51 € 5620 1344 1,765,497 93,811,891.64 €
Ciudad 15.31 84,180 100.00 100.00 1 484,375.68 € 484,375.68 € 10 8418 25,170 66,543.75 €
autónoma
de Ceuta
Ciudad 6.85 83,679 100.00 100.00 3 10,769,066.87 € 10,769,066.87 € 55 1521 6713 1,956,904.45 €
autónoma
de Melilla
Comuni- 18.83 4,616,170 90.27 64.58 164 84,059,092.67 € 84,059,092.67 € 2079 1839 897,417 33,475,367.58 €
tat Valen-
ciana
Extre- 27.93 441,938 40.03 32.90 19 2,394,145.81 € 2,394,145.81 € 75 5893 146,579 0.00 €
madura
Galicia 15.94 2,757,784 99.71 99.05 265 159,034,015.60 € 157,914,645.94 € 9323 296 712,666 102,881,711.64 €
H.-J. Reinhard
Madrid, 3.91 6,495,551 100.00 100.00 55 101,761,544.79 € 101,761,544.79 € 1040 3162 752,236 0.00 €
Comu-
nidad de
Murcia, 9.26 1,472,049 100.00 100.00 36 23,211,456.29 € 23,211,456.29 € 458 3214 215,637 1,901,102.29 €
Región de
Rioja, La 7.99 322,027 100.00 100.00 4 1,306,627.34 € 1,306,627.34 € 67 4806 51,936 393,985.66 €
a
Source: IMSERSO (2017), p. 16
Social Protection Against the Risk of Long-Term Care Dependency in Spain
469
470 H.-J. Reinhard
Table 2 Coverage of SAAD (Sistema para la Autonomı́a y Atención a la Dependencia)a
Grado de cobertura del SAAD

a 31 de julio de 2017
100,00%
80,00%
Media Nacional 74,30%
60,00%
98,66%
95,87%
95,42%
87,17%
85,46%
84,96%
84,78%
82,37%
80,27%
77,69%
77,50%
75,13%
74,30%
73,56%
72,51%
71,72%
69,37%
65,70%
40,00%
62,48%
58,58%
20,00%
0,00%
ón illa uta de
) rs de) de) na co cha bria de
) al ia ura ón oja ia ya s
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y a al ión dad nc s V an nta ora aci Ga ma Ara d al talu ana
a B g i l e M a
ill ci
p e n a Pai a C . F ia N tre An Ca C
st (R mu tV -L Ex
rin la om ed
Ca (P r ci
a
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o
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As M Na
a
IMSERSO (2017)
Autonomy means the capacity to control, cope with and take of own initative
personal decisions how to life according to the norms and own preferences and
exercise basic daily activities.
Dependency is a permanent status of persons which need due to their age,
sickness or disability and the loss of physical, mental, intelectual or sensorial
autonomy the attention of another person or important help to exercise the activities
of daily life.
The activities of daily life (Actividades Básicas de la Vida Diaria—ABVD) are
the elemental tasks of a person for personal care, household activities, essential
mobility, recognizing persons and objects, orientation, understanding and exercis-
ing orders and simple tasks.
Non professional carers (cuidadores no professionales) are persons that provide
care at home but are not linked to a professional care service. Professional care
might be provided by public or profit or non-profit private institutions or a profes-
sional self-employed person.
Personal assistance (Asistencia Personal) is provided by a personal assistant for
tasks of daily life that aims at supporting an independent living of the dependant.
The third sector (Tercer sector) comprises non-profit private organisations that
try to recognize and exercise social rights.
3.4 Principles of Law
The law is inspired by a vast catalogue of programmatic principles27 which paint a

very enthusiastic picture of the agenda: benefits are of public character, everybody
should have equal access to benefits, special needs of dependant persons have to be
taken into account, the beneficiaries should stay in their surrounding if they wish,
financing of the system should be sustainable and the cooperation between national
administration, the administrations of the Autonomous Communities and the local
entities should be close. At least the last two objectives were very optimistic. From
the beginning, the system suffered from an inadequate financing which was inten-
sified in the course of the financial crisis. More important was that the budgeted
co-financing between central state and Autonomous Communities resulted in an
obstacle for good cooperation. The designators of the law had underestimated the
respective interests in social politics and spending financial resources.28 Moreover,
the Supreme Court has ruled that the beneficiary is entitled to choose the means that
he or she thinks to be adequate for him or her.29
3.5 Rights and Obligations of Dependant Persons
Dependant persons residing in Spain have a right to benefits and services. The
entitlement can be claimed before the administrative court (orden jurisdicciónal
administrativo-contencioso).30 Jurisdiction was transferred to the social courts
(orden jurisdiccional social)31 but the relevant articles have not yet come into
force32 so that the administrative courts are still competent.33
3.6 Entitled Persons
Persons must have Spanish nationality and be in a situation of dependency.34

Minors under 3 years are also entitled but they are subject to a special process of
27
Art. 3 lit. a-q Ley 39/2006; San Martı́n Mazzucconi (2008).
28
León (2011), p. 176; Martı́n Degano (2008).
29
Sentencia de Tribunal Supremo, Sala 3ª, de lo Contencioso-Administrativo, 10.11.2015.
30
Art. 4. 2 lit. k Ley 39/2006; Cabeza Pereiro and Rodrı́guez Rodrı́guez (2008).
31
Art. 2 lit. o and lit. s Ley 36/11 of 10.10., reguladora de la jurisdicción social; Maluquer de Motes
Bernet (2010).
32
Disp. Final 7ª Ley 39/2006.
33
Sentencia de Tribunal Supremo, Sala de lo Social 1115/2013, 14.1.2014; Tribunal Supremo.
Sala de lo Social 2970/2013, 11.11.2014.
34
Art. 5.1 Ley 39/2006; Barrios Baudor (2008), Charro Baena (2008), de Ası́s and Palacios (2008),
Delgado Garcı́a et al. (2010), Moretón Sanz (2007, 2008), and Zárate Rivero (2012).
472 H.-J. Reinhard
Table 3 Number of beneficiaries with benefits since the implantation of the law
Evolución de personas beneficiarias con prestación desde la

implantación de la Ley
909.973
865.564
796.109
751.551
753.842
745.120
738.587
657.905
479.888
228.613
31-dic-2008 31-dic-2009 31-dic-2010 31-dic-2011 31-dic-2012 31-dic-2013 31-dic-2014 31-dic-2015 31-dic-2016 31-07-2017
valuation.35 Beneficiaries must have resided in Spain for at least 5 years, two of
which must precede immediately to the claim. For children under 5 years the
guardian’s residence is decisive.
Foreigners may claim benefits if they reside legally in Spain and are entitled by
law for social integration36 or are subject to international law or agreements.
Government may stipulate means of protection for Spaniards residing abroad and
for returning Spanish emigrants.
Table 3 shows that the number of beneficiaries has quadrupled and may reach
one million in the next years.
35
Disp. Ad. 13ª Ley 39//2006.
36
Ley Orgánica 4/2000 of 11.11., sobre derechos y libertades de los estranjeros en Espa~
na y su
integración social.
3.7 Level of Protection and Organisation
A basic minimum protection is guaranteed by the central state.37 Further protection

is agreed upon by the central state and each Autonomous Community.38 However,
this need for an agreement is suspended during the year 2017.39 The administration
lies with the Territorial Council of Social Services and the System for the Auton-
omy and Attention for Dependency (Consejo Territorial de Servicios Sociales y del
Sistema para la Autonomı́a y Atención a la Dependencia).40 The administration of
the central state is also involved41 and shall cooperate with the administrations of
the Autonomous Communities.42 They main responsibility for planning, organiz-
ing, coordination and administering care lies with the respective Autonomous
Community43 and local entities should also participate.44
3.8 Benefits and Services Granted According to the Degree

of Long-Term Care Dependency
3.8.1 Benefits in Kind (Services)
Benefits for care should promote personal autonomy and improve the quality of life.
They should facilitate an autonomous existence in the usual surroundings as long as
the interested person wishes and should also provide for a life in dignity.45
The benefits that are stipulated in Art. 15 Ley 39/2006 prevail.46 They are
provided via the net of social services (Red de servicios Sociales) of each Auton-
omous Community in public centers or via services provided by contracted private
entities (concertados). Only in case that these services are not available a cash
benefit (prestación económica vinculada) is granted. This cash benefit has to be
used to cover the costs of services stitulated in the Individual Attention Program
(Programa Individual de Atencion—PIA47).
37
Art. 7.1 Ley 39/2006.
38
Art. 7.2 Ley 39/2006 (Aragón Medina et al. 2007).
39
Disp. Ad. 91 Ley 3/2017 of 27.6.
40
Art. 8 Ley 39/2006.
41
Art. 9 Ley 39/2006.
42
Art. 10 Ley 39/2006.
43
Art. 11 Ley 39/2006.
44
Art. 12 Ley 39/2006.
45
Art. 13 Ley 39/2006.
46
Art. 14 Ley 39/2006 (Benlloch Sanz 2008; Luján Alcaraz et al. 2008).
47
Art. 29 Ley 39/2006.
474 H.-J. Reinhard
Only in exceptional cases the dependant person shall receive a cash benefit for
non-professional care.48 A special financial cash benefit is paid for personal assis-
tance (asistencia personal).49 The priority for access to services depends on the
degree of dependency and the economic capacity of the interested person which
takes into account income and property assets.50 The calculation has also to observe
the solicitant’s age and the kind of the required benefit.51
The law stipulates a catalogue of benefits in kind52:
• Prevention of long-term care dependency and promotion of personal autonomy
(prevención dependencia y promoción autonomı́a)53
• Teleassistance (teleasistencia)54
• Home assistance (ayuda a domicilio)55
– Attention to the needs of the household
– Personal care
• Day-care/night-care centres (centros de dı́a/noche)56
– Day centres for elderly people
– Day centres for people under age 65
– Day centres for special attention
– Night centres
• Residential care (atención residencial)57
– Residences for elderly persons who need care
– Centres for the attention of persons who need care according to different
types of disability
Socio-sanitary benefits (medical treatment)58 of the health care system prevail.59
Benefits under Art. 15 Ley 39/2006 are incompatible with each other apart from
prevention services, promotion of autonomy and teleassistance.60
48
Art. 14.4 Ley 39/2006.
49
Art. 14.5 Ley 39/2006.
50
Resolución de 13 de julio de 2012, de la Secretarı́a de Estado de Servicios Sociales e Igualdad,
por la que se publica el Acuerdo del Consejo Territorial del Sistema para la Autonomı́a y Atención
a la Dependencia para la mejora del sistema para la autonomı́a y atención a la dependencia.
51
Art. 14.7 Ley 39/2006.
52
Art. 15.1 Ley 39/2006.
53
Art. 21 Ley 39/2006.
54
Art. 22 Ley 39/2006.
55
Art. 23 Ley 39/2006.
56
Art. 24 Ley 39/2006.
57
Art. 25 Ley 39/2006.
58
Art. 14 Ley 16/2003 of 28.5., de cohesión y calidad del Sistema Nacional de Salud.
59
Art. 15.2 Ley 39/2006.
60
Art. 25bis Ley 39/2006.
Table 4 Income limits and Level of yearly income Reduction factor (%)
reduction factores for the
Up to 20,000.00 € 0
benefit (Basque Country)
From 20,000.01 to 39,999.99 € 10
From 40,000.00 to 59,999.99 € 20
60,000.00 € and more 25
3.8.2 Cash Benefits (Prestaciones económicas)
• Benefits granted for service provision (prestación vinculada al servicio)61

• Benefits granted for long-term care provided in the family setting (prestación
para cuidados no profesionales en el entorno familiar)62
• Benefits granted for personal assistance (prestación de asistencia
personalizada)63
The amount of benefits is fixed by the Consejo Territorial del Sistema para la
Autonomı́a y la Atención a la Dependencia64 As an example may serve the figures
for the Basque Country. The amounts in the other Autonomous regions similar.
Table 4 shows benefits granted for long-term care provided in the family setting
(prestación para cuidados no profesionales en el entorno familiar)65:
The maximum amount is reduced if the beneficiary’s income exceeds certain
limits.
From the reduced benefit the following benefits are deducted:
• The supplement for great invalidity (complemento de gran invalidez)
• The supplement for dependent child older than 18 years with a degree of
disability that is equal or more than 75% (complement de asignación económica
por hijo a cargo mayor de 18 a~nos con un grado de discapacidad igual o superior
al 75 por 100)
• The supplement for necessity of a third person provided in the non contributary
pension scheme (complemento por necesidad de tercera persona de la pension de
invalidez no contributiva)
• The subsidy for help of a third person according to the LISMI66
61
Art. 17 Ley 39/2006.
62
Art. 17 Ley 39/2006.
63
Art. 18 Ley 39/2006.
64
Art. 8 Ley 39/2006.
65
Decreto Foral de la Diputación Foral de Bizkaia 85/2015, of 23.6., por el que se aprueba en el
Territorio Histórico de Bizkaia, las cuantı́as máximas, de la prestación económica para cuidados
en el entorno familiar, de asistencia personal y vinculada al servicio foral residencial; Decreto
Foral 152/2016, of 11.10, por el que se regula la prestación económica para cuidados en el entorno
familiar.
66
Art. 12-17 Ley 13/1982, of 7.4., de integración social de los minusválidos (valid until
04.12.2013), now Real Decreto Legislativo 1/2013, of 29.11., por el que se aprueba el Texto
Refundido de la Ley General de derechos de las personas con discapacidad y de su inclusión
social.
476 H.-J. Reinhard
Table 5 Benefits for Degree III 90–100 points 520.69 €

non-professional carers
Degree III 75–89 points 416.98 €
(Basque Country)
Degree II 65–74 points 337.25 €
Degree I 40–49 points 180.00 €
Table 6 Benefits for Degree III 90–100 points 833.96 €

personal assistance
The máximum amounts are shown in Table 5.

Table 6 shows benefits for personal assistance (prestación económica de
asistencia personal)67:
The money has to be spent for the costs to provide personal assistance. The
beneficiary may contract a company or sign a labour or service contract with an
individual person. In degree III this contract must comprise a workload of at least
5 h per week, in degree II not less than 4 h per week and in degree I a minimum of
3 h per week.
A cash benefit is paid for the costs of residential care (Table 7). The care home
must be registered in the Basque Register for Social Services (Registro Foral de
Servicios Sociales del Territorio Histórico de Bizkaia). Table 7 shows the amount
of benefits.
There are no payments for degree I.
Table 8 shows the situation of residences in Spain for persons older than 65. Of
course, not all users are dependent persons.
Moreover, there are benefits that are mostly paid in the form of subsidies to
improve the personal autonomy of the person in need of care; they refer to technical
aids, the removal of barriers, modifications to the home etc.68
67
Decreto Foral de la Diputación Foral de Bizkaia 85/2015, of 23.6., por el que se aprueba en el
Territorio Histórico de Bizkaia, las cuantı́as máximas para el a~
no 2015, de la prestación económica
para cuidados en el entorno familiar, de asistencia personal y vinculada al servicio foral
residencial.; Decreto Foral de la Diputación Foral de Bizkaia 44/2015, of 17.3., por el que se
modifica el Decreto Foral 103/2013, de 23 de julio, por el que se regula la prestación económica de
asistencia personal; Decreto Foral 103/2013, de 23 de julio, de la Diputación Foral de Bizkaia, por
el que se regula la prestación económica de asistencia personal; Decreto Foral 177/2013, de 10 de
diciembre, por el que se modifica el Decreto Foral 103/2013, de 23 de julio, por el que se regula la
prestación económica de asistencia personal.
68
Disposición Adicional Tercera Ley 39/2006.
Table 7 Benefits destinated for residential care (Prestación económica vinculada al Servicio
Público Foral residencial para personas dependientes)a
a
Decreto Foral de la Diputación Foral de Bizkaia 157/2016, de 31 de octubre, por el que se regula
la prestación económica vinculada al servicio residencial. Decreto Foral de la Diputación Foral de
Bizkaia 85/2015, de 23 de junio, por el que se aprueba en el Territorio Histórico de Bizkaia, las
cuantı́as máximas para el a~ no 2015, de la prestación económica para cuidados en el entorno
familiar, de asistencia personal y vinculada al servicio foral residencial
Table 8 Residences for Spain

people older than 65
Number 5387
Places 381,333
Users 297,220
Public price of place (Non dependent) 16,000.51 €
Price of concertation (dependent) 17,224.54 €
Economic contribution of the user 43.94%
Index of coverage of places 4.40%
Total places public financing 212,525
Persons 65 and older 8,657,705
Not all persons in need of long-term care are entitled to all kinds of benefits. The
entitlement first of all depends on the degree of long-term care dependency
awarded. Benefits that are to be granted must be listed in the individual care
programme (Programa Individual de Atención—PIA).69 Hence, different benefits
and services are provided for each of the degrees of long-term care dependency:
Moderate long-term care dependency (dependencia moderada) (degree I)
(prevención dependencia y promoción autonomı́a)
• Teleassistance (teleasistencia)
• Home assistance (ayuda a domicilio)
• Day-care/night-care centres (centros de dı́a/noche)
• Financial benefits provided
• Benefits granted for service provision (prestación vinculada al servicio)
para cuidados en el entorno familiar)
Severe long-term care dependency (dependencia severa) (degree II)
69
Art. 29 Ley 39/2006; Palomar Olmeda (2008), Pérez Bueno (2008a, b), and Pérez Campos
(2008).
478 H.-J. Reinhard

• Residential care (atención residencial)
Benefits granted for extremely severe long-term care dependency (gran
invalidez) (degree III, level 1 and 2):
• Residential care (atención residencial)
• Benefits granted for personal assistance (prestación de asistencia personalizada)
3.9 Assessing the Degree of Long-Term Care Dependency
The law was not fully implemented at once. Between 2007 and 2015 benefits and
services have been gradually introduced or granted as shown below in Table 9:
Assessing long-term care dependency and classifying it according to one of the
three degrees of long-term care (grados) and formerly in one of their sub-levels
(niveles) is incumbent upon the medical service of the respective Autonomous
Community, the latter of which is also in charge of health care. Although the law
did not come all of a sudden, it was quite rapidly adopted so that the timeframe for
the preparation of the practical implementation was very short. Moreover, while the
Table 9 Years of Degree Ia Level 1 2014

implementation
Level 2 2014
Degree II Level 1 2009, 2010
Level 2 2008, 2009
Degree III Level 1 2007
Level 2 2007
a
Originally, the implementation of degree I was foreseen for
2011, than postponed for financial reason to to 2013 and then to
2014
Table 10 Points and degrees Points Degree

0–24 Without recognized degree
25–39 Degree I level 1
40–49 Degree I level 2
50–64 Degree II level 1
65–74 Degree II level 2
75–89 Degree III level 1
90–100 Degree III level 2
law regulates the financial benefits granted to the persons in need of long-term care,
it does not regulate the specific financing of the personnel concerned. Because of
labour shortages, in-depth assessment and classification of applicants was virtually
impossible for the medical services. Thousands of persons in need of long-term care
were waiting for 8–15 months to be classified.70 In the meantime many of them
died, while younger persons with disabilities had to be accommodated in inappro-
priate facilities.71 Although the application backlog did not come unexpectedly, the
new law somehow fell into public disrepute. In the light of the potential number of
persons in need of long-term care, start-up problems had to be expected. This was,
however, not put on the political agenda because of the high initial costs that would
have been involved. Now that the transitional period has ended, only new cases of
long-term care dependency are to be assessed so that the situation has improved.
However, the general austerity measures are now resulting in considerable staff
shortages again.
Classification into one of the three degrees and formerly in one of the two levels
respectively is made on the basis of a catalogue of points (see Table 10),72 with the
assessment criteria being a person’s remaining abilities or the extent to which a
person in need is dependent on help. In general the degrees are defined as follows73:
1. Moderate long-term care dependency (dependencia moderada) (degree I):
The person concerned requires help at least once a day with various activities
of daily living or is in need of periodic or limited support for his/her personal
autonomy.
2. Severe long-term care dependency (dependencia severa) (degree II):
The person concerned requires help at least two or three times a day with
various activities of daily living but does not want the permanent help by one
caregiver, or is in need of extensive support services for his/her personal
autonomy.
70
El Paı́s 12/03/2009, p. 30; (Pérez Castillo and Olmedo Areal 2009).
71
El Paı́s 20/03/2009, p. 40.
72
RD 504/2007, replaced with effect from 18 February 2012 by RD 174/2011 of 11 February 2012.
73
Art. 26 Ley 39/2006; Real Decreto 174/2011, de 11.2., por el que se aprueba el baremo de
valoración de la situación de dependencia establecido por la Ley 39/2006, de 14.12., de Promoción
de la Autonomı́a Personal y Atención a las personas en situación de dependencia, (Albor 2008;
Caballer Mellado 2009).
480 H.-J. Reinhard
3. Benefits granted for extremely severe long-term care dependency (gran

invalidez) (degree III):
The person concerned requires help at least several times a day with various
activities of daily living and is in need of indispensable, continued assistance from
another person for loss of his/her physical, spiritual, intellectual or sensory auton-
omy, or general support for his/her personal autonomy.74
The classification degree and the individual care programme can be redefined
and readjusted at any time if the degree of need for support has changed.
Since 2012 the are only degrees and the levels were omitted. This measure
should make procedures faster and less burocratic. However, the economic conse-
quences were not yet clear75 and the assessment according to points did not change.
3.10 Services and Benefits in Detail
3.10.1 Services Directed Towards Prevention and Personal Autonomy
Statistically, these services play a marginal role.76 The reason for this may be that
the degree of moderate long-term care dependency, for which these services are
more likely to be intended, has not yet been completely integrated into the
implementation.
3.10.2 Services Directed Towards Prevention
The cooperation between social and health care services shall help prevent long-
term care dependency and especially hospitalisation. The respective executive
decree77 says nothing about the intensity but leaves the regulation to the legislation
of the respective Autonomous Community. Anyhow, an amendment of the law78
made it possible to give priority to these services granted according to degree I
although, under the terms of the implementation plan, degree I was only to be
completely integrated into the catalogue of benefits and services in 2014.
The Autonomous Communities and their local authorities are requested to
develop individual prevention plans. By 2011, this had not been the case. So far,
only the social foundation “La Caixa” has developed such prevention plans,
74
Real Decreto 174/2011, Anexo I.
75
Trillo (2012).
76
On 1 January 2011 approximately 800,000 persons were recognised as being dependent on long-
term care, but only 11,000 made use of long-term care services; Alemán Bracho et al. (2013) and
UNED (2010).
77
RD 727/2007.
78
RD 175/2011 with effect from 11 February as of 1 February 2011.
thereby cooperating with five Autonomous Communities and their respective

local authorities.
3.10.3 Services Directed Towards the Promotion of Personal Autonomy
The objective of these services is to facilitate the performance of the fundamental

activities of daily living and to make autonomous life possible. The following
services may be taken into consideration:
• Rehabilitation and occupational therapy
• Early intervention
• Cognitive stimulation
• Promotion, maintenance and restoration of functional autonomy
• Psychosocial rehabilitation for persons with intellectual or psychological
impairments
• Individual support and provision of care in special facilities (assisted living)
The possible number of hours is calculated according to the relevant type of
long-term care dependency79 and imposes a restriction on the individual care
programme and must hence not be exceeded.
3.10.4 Services Concerning Home Assistance80
Home assistance (Servicio de Ayuda a Domicilio—SAD) has a long tradition and is

also offered by institutions outside the SAD (e.g. church organisations, neighbourly
help, etc.). A distinction is made between domestic help (washing, cleaning,
cooking, etc.) and personal help (accompanying a person, measures to combat
isolation, etc.).
Also here, the number of hours to be spent on assistance is laid down in the
individual care programme and is based on the legal framework conditions and the
respective degree of long-term care dependency.
3.10.5 Services Concerning External Support
These services are especially conceived to offer single persons the opportunity to
communicate with the outside world through e.g. emergency alarm systems, emer-
gency hotlines, contact via the internet, and the like.
79
Annex I to RD 727/2007.
80
Rodriguez Rodriguez (2011) and Rodrı́guez Rodrı́guez and Sitges (2016).
482 H.-J. Reinhard
The services shall be basically free of charge. The Autonomous Community may
ask the user to contribute to the costs, especially if the latter is not recognised as
being dependent on long-term care.81
3.10.6 Day-Care/Night-Care Centres (centros de dı́a/noche)
According to the law, the purpose of these centres is to provide long-term care to
persons in need of care, but also to ease the burden on family caregivers. According
to the law, the centres are divided into four categories:
• Day-care centres for older persons
• Day-care centres for persons under 65 years of age
• Day-care centres providing specialised care
• Night-care centres
Here again, the individual care programme specifies to what extent services are
to be provided.
3.10.7 Residential Care (atención residencial)
Approximately one out of four persons in need of long-term care requires

residential care.
3.10.8 Financial Support Granted for Service Provision
This kind of support is called upon by about 6.28% of the persons concerned. It is a
subsidiary benefit that can only be provided if the SAD/SAAD cannot deliver the
service itself.
3.10.9 Financial Support for Personal Assistance
This kind of support is available for persons who are in need of extremely intensive
long-term care and serves to satisfy additional needs. With a share of 0.9% it plays
hardly any role in statistics.
81
This may be of importance in rural areas with little population, for instance; Fernández Santiago
(2008).
3.10.10 Financial Benefits Granted for Long-Term Care Provided

in the Family Setting and for Supporting Non-professional
Caregivers
Contrary to the intention of the law, home care is the most common type of
assistance also in Spain. Approximately 46.38% of the services provided relate to
this kind of assistance. Also in this context, the individual care programme must
specify whether care in the family setting is appropriate and feasible.
Table 11 shows the number of beneficiaries and the benefits provided.
3.11 Applications and Resolutions
In 2017, 1.518.965 applications were accepted for the assessment of long-term

care.82 Table 12 shows the number of decided cases.
3.12 Non Professional Carers
Spanish social insurance law does normally not provide an option to insure persons
without gainful employment. Under certain conditions it is, however, possible to
conclude an agreement (convenio) that obliges the person concerned to contribute to
social insurance. For drawing financial benefits for long-term care provided in the
family setting, the conclusion of such a “convenio” is mandatory. Contributions to
social insurance (seguridad social) and occupational training (formación
profesional) do not have to be paid by the person concerned but are transferred by
the “Instituto de Mayores y Servicios Sociales—IMSERSO” (institute for senior
citizens and social services) directly to the “Teserorı́a General de la Seguridad
Social” (general contribution fund of social insurance). The beneficiary receives
the payable amount without any deduction.83 As from 1 January 2009, the contri-
butions awarded for 2007 and 2008 increased by 2.4%, originating from the 2008
level.84 However, in 2012 Government reduced the benefits for family carer by 15%.
Altogether, financial support for family caregivers was granted in December
2011 to 170,000 cases, with one third of them referring to Andalusia, which only
comprises one sixth of the Spanish population. In contrast, in the community of
Madrid, which covers approximately 1/10 of the Spanish population, this benefit
was granted in 1% of the cases only. This was due to the fact that the law is
82
Instituto de Mayores y Servicios Sociales (Imserso) (2017).
83
Disposición adicional única Real Decreto 73/2009, de 30 de enero; Cano Galán (2008) and
Ramiro Collar (2008).
84
Disposición transitoria única Real Decreto 73/2009, de 30 de enero; Quesada Páez (2014).
Table 11 Beneficiaries and Benefits (31.7.2017)
484
Benefits
Prevention of Special Special
depend. and Help at home benefits benefits Ratio of
Benificiaries Prom.of Pers. (Ayuda a Day/night Residential linked to Special benefits personal benefits per
Autonomous with benefits Autonomy Teleasistenc Domicilio) Centres care service family Carers assistance Total beneficiary
community N N % N % N % N % N % N % N % No % N % N
Andalucı́a 186,817 1584 0.66 75,803 31.61 52,125 21.74 13,408 5.59 23,691 9.88 3150 1.31 70,046 29.21 9 0.00 239,816 100.00 1.28
Aragón 23,965 2706 10.17 604 2.27 1940 7.29 1454 5.47 3804 14.30 4800 18.04 11,293 42.45 0 0.00 26,601 100.00 1.11
Asturias 20,958 5864 21.88 964 3.60 3653 13.63 2246 8.38 3122 11.65 2371 8.85 8583 32.02 2 0.01 26,805 100.00 1.28
(Principado
de)
Illes Balears 15,982 263 1.56 737 4.38 504 2.99 1049 6.23 2314 13.74 759 4.51 11,214 66.59 0 0.00 16,840 100.00 1.05
Canarias 17,620 29 0.16 624 3.44 11 0.06 3861 21.26 3510 19.33 2821 15.53 7306 40.23 0 0.00 18,162 100.00 1.03
Cantabria 14,961 0 0.00 1256 7.54 979 5.88 1729 10.38 4354 26.13 0 0.00 8342 50.07 0 0.00 16,660 100.00 1.11
Castilla y 85,837 12,921 11.80 8335 7.61 22,472 20.52 8335 7.61 8486 7.75 24,554 22.42 24,048 21.96 364 0.33 109,515 100.00 1.28
León
Castilla-La 49,090 4603 7.73 9671 16.24 12,722 21.37 3094 5.20 11,793 19.81 4407 7.40 13,239 22.23 13 0.02 59,542 100.00 1.21
Mancha
Catalunya 137,661 1052 0.61 17,159 9.98 23,905 13.90 11,524 6.70 27,189 15.81 10,850 6.31 80,248 46.67 14 0.01 171,941 100.00 1.25
Comunitat 57,705 535 0.87 3974 6.48 0 0.00 6481 10.57 10,293 16.78 8778 14.31 31,274 50.99 0 0.00 61,335 100.00 1.06
Valenciana
Extremadura 25,414 1150 4.10 1806 6.45 759 2.71 1797 6.41 4530 16.17 11,045 39.42 6934 24.75 0 0.00 28,021 100.00 1.10
Galicia 48,949 3583 6.45 2973 5.35 16,749 30.16 6941 12.50 7519 13.54 4986 8.98 12,698 22.86 90 0.16 55,539 100.00 1.13
Madrid 110,903 2784 1.91 34,286 23.55 32,230 22.14 15,157 10.41 22,656 15.56 14,592 10.02 23,808 16.35 76 0.05 145,589 100.00 1.31
(Comunidad
de)
Murcia 32,691 3540 8.68 5401 13.24 308 0.76 3492 8.56 4163 10.21 1669 4.09 22,205 54.45 0 0.00 40,778 100.00 1.25
(Región de)
Navarra 11,311 190 1.34 1755 12.34 975 6.85 277 1.95 1815 12.76 1059 7.45 8151 57.30 2 0.01 14,224 100.00 1.26
(Comunidad
Foral de)
Paı́s Vasco 60,052 143 0.19 8348 11.37 6607 9.00 7024 9.57 12,615 17.18 1193 1.62 32,279 43.96 5224 7.11 73,433 100.00 1.22
La Rioja 7469 873 8.35 2141 20.49 2021 19.34 883 8.45 1422 13.61 869 8.31 2242 21.45 0 0.00 10,451 100.00 1.40
Ceuta y 2588 430 12.35 591 16.97 777 22.31 75 2.15 207 5.94 3 0.09 1399 40.18 0 0.00 3482 100.00 1.35
H.-J. Reinhard
Melilla
TOTAL 909,973 42,250 3.78 176,428 15.77 178,737 15.98 88,827 7.94 153,483 13.72 97,906 8.75 375,309 33.55 5794 0.52 1,118,734 100.00 1.23
a
de
León
Spain
Ceuta
Melilla
Galicia
Ciudad
Ciudad
Aragón
Murcia,
Madrid,
Mancha
Foral de
Navarra,
Canarias
Cataluña
Asturias,
Rioja, La
Castilla y
Cantabria
Andalucía
Región de
Comunitat
País Vasco
Castilla-La
Valenciana
Comunidad
Comunidad
autónoma de
autónoma de
Extremadura
Balears, Illes
Principado de
70.512 671 2.096 535 4.343 8.366 4.612 2.213 4.710 72 83 9.368 2.712 4.655 1.021 2.717 705 1.286 1.520 18.827
Level II
4,52% 2,25% 2,97% 10,23% 4,95% 5,93% 4,71% 5,50% 3,36% 4,70% 3,49% 3,36% 4,23% 4,92% 7,48% 3,02% 4,04% 3,77% 5,30%
114.220 832 4.413 501 4.649 12.699 6.986 3.361 7.051 128 62 20.408 5.079 7.551 1.937 3.947 1.598 1.725 2.840 28.453
Level I
5,60% 4,74% 2,79% 10,95% 7,51% 8,98% 7,16% 8,23% 5,98% 3,51% 7,60% 6,29% 6,86% 9,33% 10,86% 6,85% 5,42% 7,05% 8,01%
179.188 1.422 13.112 2.271 5.398 24.298 13.309 6.132 8.614 335 226 22.303 10.651 15.998 2.610 5.104 2.976 4.026 6.479 33.924
No Level
9,58% 14,08% 12,63% 12,71% 14,38% 17,11% 13,06% 10,05% 15,64% 12,79% 8,30% 13,19% 14,53% 12,57% 14,05% 12,75% 12,65% 16,07% 9,55%
87.215 558 3.329 601 3.898 9.242 4.981 1.947 6.194 88 40 15.596 3.651 4.964 1.502 2.425 1.273 1.329 2.062 23.535
Level II
3,76% 3,57% 3,34% 9,18% 5,47% 6,40% 4,15% 7,23% 4,11% 2,26% 5,81% 4,52% 4,51% 7,24% 6,68% 5,45% 4,18% 5,12% 6,63%
140.605 1.139 5.709 987 6.008 11.976 6.907 2.946 10.321 107 40 27.533 6.102 7.679 2.295 3.183 2.012 2.218 3.730 39.713
Level I
7,67% 6,13% 5,49% 14,15% 7,09% 8,88% 6,27% 12,04% 5,00% 2,26% 10,25% 7,56% 6,97% 11,06% 8,76% 8,62% 6,97% 9,25% 11,18%
227.921 2.082 15.659 3.770 6.168 21.765 11.672 6.693 9.335 357 421 43.617 12.263 16.947 3.219 4.867 4.473 4.783 6.884 52.946
No Level
Degree III Degree III Degree III Degree II Degree II Degree II
14,02% 16,81% 20,96% 14,53% 12,88% 15,00% 14,25% 10,89% 16,67% 23,83% 16,24% 15,19% 15,39% 15,51% 13,40% 19,16% 15,03% 17,08% 14,91%
67.107 353 3.440 582 2.348 8.028 3.657 1.284 5.783 37 51 9.964 3.917 4.925 1.179 1.525 856 1.385 1.793 16.000
Level II
2,38% 3,69% 3,24% 5,53% 4,75% 4,70% 2,73% 6,75% 1,73% 2,89% 3,71% 4,85% 4,47% 5,68% 4,20% 3,67% 4,35% 4,45% 4,50%
93.551 776 4.744 977 2.307 9.888 4.575 1.768 7.760 60 24 16.078 6.733 5.467 1.235 1.559 911 1.728 2.720 24.241
Table 12 Number of resolutions (decisions) on dependency (30.6.2017)a
Level I
5,23% 5,09% 5,43% 5,43% 5,85% 5,88% 3,76% 9,05% 2,80% 1,36% 5,99% 8,34% 4,96% 5,95% 4,29% 3,90% 5,43% 6,75% 6,82%
Social Protection Against the Risk of Long-Term Care Dependency in Spain
233.554 2.603 20.315 3.862 3.357 20.890 9.795 8.790 8.401 276 271 52.474 13.440 17.640 2.430 5.436 3.746 5.257 5.557 49.014
Degree I Degree I Degree I
No Level
17,53% 21,81% 21,47% 7,91% 12,36% 12,59% 18,72% 9,80% 12,89% 15,34% 19,54% 16,65% 16,02% 11,71% 14,96% 16,05% 16,52% 13,79% 13,80%
305.092 4.413 20.315 3.901 3.978 41.837 11.310 11.832 17.539 682 549 51.211 16.180 24.292 3.331 5.566 4.790 8.080 6.726 68.560
-
29,72% 21,81% 21,69% 9,37% 24,76% 14,54% 25,19% 20,46% 31,84% 31,07% 19,07% 20,04% 22,06% 16,05% 15,32% 20,52% 25,40% 16,69% 19,30%
No Degree
485
1.518.965 14.849 93.132 17.987 42.454 168.989 77.804 46.966 85.708 2.142 1.767 268.552 80.728 110.118 20.759 36.329 23.340 31.817 40.311 355.213
As of 2012 the levels are no longer seperately disclosed but only degrees of dependency are used
Total
100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100% 100%
486 H.-J. Reinhard
Table 13 Special Autonomous community Finalized

agreements for non
ANDALUCÍA 1719
professional carers
(Autonomous Community) ARAGÓN 278
(31.7.2017) ASTURIAS 237
ILLES BALEARS 81
CANARIAS 169
CANTABRIA 237
CASTILLA Y LEÓN 593
CASTILLA-LA MANCHA 434
CATALUNYA 1386
COMUNITAT VALENCIANA 817
EXTREMADURA 222
GALICIA 940
MADRID 498
MURCIA 533
NAVARRA 141
PAÍS VASCO 556
LA RIOJA 80
CEUTA 2
MELILLA 1
Total Spain 8924
implemented at different paces, as described above. Twenty-four thousand sixty-

eight persons are registered as family carers in Andalusia, which is the highest
number in Spain. In Madrid, this number amounted to only 70 family carers with a
total number of 52,230 persons85 being covered by a “convenio”.
The 2012 reform changed the situation dramatically. Government does no longer
pay contributions for family carers to the social security system. This is why 94%
now of the carers are no longer insured (estar de alta) in the social security system.
Only those who were insured before coming into force of the reform decree remain
in the system via a “convenio” (Table 13).
The vast majority (approximately 95%) of family carers are women (Table 14).
Although the reform law was very much critized the Preesiden of Government
said it was necessary to implement it in order to guarantee the sustainability of the
system. The payment of contributions amounted to some one billion € and all
reform measures shouls save some 3.5 billion €.
The contributions were conceived in such a way that they do not create an
obvious incentive for family members to renounce or not accept gainful employ-
ment. On the other hand they could contribute a considerable amount to the family
income in regions with high unemployment such as Andalusia. Despite the good
85
SAAD, Estadı́sticas del Sistema para la Autonomı́a y la Atención a la Dependencia, Potral
Mayores, HYPERLINK “http://www.imsersomayores.csic.es”, p. 14 (as of 1 March 2009);
Casado and Fantova (2017).
Table 14 Special Sex Male 989

agreements for non
Female 7935
professional carers (Sex and
Age) (31.7.2017)a Age Younger than 50 2223
51–55 1989
56–60 2384
Older than 60 2328
a
Source: Tesorerı́a General de la Seguridad Social, Elaboracion:
Instituto de Mayores y Servicios Sociales (Imserso)
Table 15 Benefits for cares

Economic performance For care in the family setting (%)
Less than 1 IPREM 100
1–2 times the IPREM 95
More than 5 times the IPREM 75
intentions expressed by the legislator not to make long-term care a family task,
there is a risk that at least in the less developed regions of Spain the main task of
providing long-term care will traditionally come to rest upon women again. How-
ever, as social insurance is involved, there is a guarantee that the entitlement to an
old-age pension will not be lost due to long-term care responsibilities. The 2012
reform now leaves family carers without social protection in old age.
The amounts indicated are maximum amounts. Personal income is taken into
account. The amount of the sum to be taken into account is determined by the
Autonomous Community. The example is drawn from the “Comunidad Autónoma”
of Andalusia. After the 2012 reform it applies only to the family carers remaining in
the system. The opposition party PSOE has launched an initiative to re-establish the
former contribution system which was very much in favour of women. Table 15:
shows the basis for the calculation of contributions.
The IPREM (Indicador Público de Renta de Efectos Múltiples) corresponds to
the public income indicator of multiple effects and serves as a parameter for all
means-tested benefits and services. It is assessed annually by the budget law and
generally rises in accordance with the increase in consumer prices. For 2017 the
IPREM86 was fixed as foll 7,455.14 €.
At any rate, a minimum benefit is paid. It is calculated according to the degree
and level of long-term care dependency (Table 16), on the basis of the
non-contributory minimum pension (pensión no contributiva) (Tables 17 and 18):
If in one family lives more than one beneficiary the individiual amounts are
reduced.
86
La Ley de Presupuestos del Estado of 27.6.2017, effective 29.6.2017.
488 H.-J. Reinhard
Table 16 Percentage for Degree III (level 1 and 2) 100%

calculation of contribution
Degree II (level 2) 75%
Degree II (level 1) 50%
Table 17 Minimum Pension Basic amount for 2017

2017 (individual)
Amount Year Month
Full 5,164.60 € 368.90 €
Minimum 25% 1,291.15 € 92.23 €
Table 18 Minimum pension Beneficiaries Year Month

2017 (more than one
2 4,389.91 € 313.57 €
beneficiary)
3 4,131.68 € 295.12 €
3.13 Financing of Benefits and Services
The financing of benefits and services is split into three parts that are all
tax-financed. The first part covers the basic benefits and services as determined
by the law (prestaciones básicas). For these benefits and services a certain sum is
transferred to the Autonomous Communities by the Central Government. This sum
depends on the size and the morbidity of the population. A further part covers
additional benefits and services that are also regulated by the legal provisions. In
this context, financing is provided in equal parts by the Central Government and the
Autonomous Communities, the latter of which have to pay the same amount of
money from their budgets as is paid by Madrid. Finally, each of the Autonomous
Communities is at liberty to provide additional benefits and services at its own
expenses.
The reform of 2012 has partly revised the financing system. In the past, for
financing the minimum level by the central state 90% based on the number of the
dependent persons living in an Autonomous Community and 10% based on the
number of dependent persons being attended by the social services of the Auton-
omous Community. From 2017, the calculation bases for 50% on the number of
dependent persons and for 50% on the number of dependent persons receiving
social services.
4 Securing Long-Term Care in Times of Financial Crisis
Due to the financial crisis some of the Autonomous Communities are suffering from
severe financial distress. Some of them are in arrears with payments to service
providers or beneficiaries, in some cases by several monthly rates. In the meantime
“emergency budget laws” have been adopted which provide for instalments to be
paid by the public authorities to the parties concerned. This is, however, of little use
if those parties are in urgent need of the payments. In some extreme cases, the
money paid by Madrid was even not passed on to the persons in need of long-term
care but was used for other purposes. This is illegal, of course, and it also shows that
the persons dependent on long-term care and their relatives do not have a very
powerful lobby. In the face of the financial crisis in Spain, the new head of
Government has even questioned the further development and expansion of long-
term care insurance altogether.
Meanwhile, the system is under even greater pressure due to the austerity
measures taken by the Central Government and by the Autonomous Communities.
In a first step it was decided to postpone by at least 1 year the introduction of the
degrees/care levels that have not yet been adopted. This chiefly related to persons
with moderate and medium long-term care dependency. The available financial
resources were reduced by approximately 20% and charges were introduced
(e.g. for objections raised against an allocated long-term care degree), as well as
co-payments for various services. As co-payments now also have to be made in the
health care system, many people feel that this exceeds their financial resources.
That is why demonstrations were organised by some of the persons concerned.
Given the significant financial difficulties of the Central Government and of some
of the Autonomous Communities, these demonstrations were, however, not suc-
cessful. Especially the Autonomous Community of Valencia sets a negative exam-
ple in this context: For its own glorification, the government of Valencia had
conceived large-scale projects (like an iconic airport unsuitable for landing) and
is now neither in a position to refund the expenses of the service providers nor to
provide the services to the persons in need. Meanwhile some of the service pro-
viders are at risk of insolvency due to outstanding payments. The persons concerned
often live off their savings and from the income of other family members—if such
an income exists in view of the high unemployment rate.
At the same time, the high number of cases not yet reviewed87 is rising. In 2016
the waiting list comprises 100,000 cases that have not been dealt with.88 One would
almost think that the financial problem of securing long-term care should be solved
by way of natural selection. Meanwhile some courts have granted indemnization
payments to families of died dependent persons who did not receive adequate
attention in time.89 Since jurisprudence is very contrary it is only a matter of time
that this custion has to be deceide by the Supreme Court.
87
González Ortega (2013) and Molero Mara~ nón (2017).
88
Herrera (2016) and Blasco Lahoz (2015).
89
El espa~nol (2017) and Martı́n Palomo (2016).
490 H.-J. Reinhard
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Aranzadi, Pamplona
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Reinhard HJ (2007) Spanien: Gleiche Altersgrenzen – gleiche Chancen?. In: ZIAS 2007, pp
197–201
Rodriguez Rodriguez P (2011) Los Servicios De Ayuda A Domicilio, 3th edn. Médica
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local y perspectivas de futuro. Fundación Caser, Madrid
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plona, pp 141–156
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Sieveking (ed) Soziale Sicherung bei Pflegebedürftigkeit in der Europäischen Union, Studien
aus dem Max-Planck-Institut für ausländisches und internationales Sozialrecht, vol 20. Nomos,
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Valencia
in Sweden
Sebastian Weber
Contents
1 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 496
1.1 Social Services Offered by the Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 497
1.2 Supplementary Social Security Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 498
2 Individual Services and Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 499
2.1 Services for the Elderly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 500
2.1.1 Benefits and Services Pursuant to the Social Services Act . . . . . . . . . . . . . . . . . . 501
2.1.2 Benefits and Services Pursuant to the Swedish Health Care Law . . . . . . . . . . 504
2.2 Benefits and Services for Persons with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 505
2.2.1 Special Support and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 505
2.2.2 Subsidy for an Assistant . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 506
2.3 Disability Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 507
2.4 Benefits and Services for Children and Adolescents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 508
2.4.1 Care Allowance, Care Benefit (Child-Care Subsidy) . . . . . . . . . . . . . . . . . . . . . . . . 509
2.4.2 Temporary Parental Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 510
2.4.3 Basic Principles Concerning Service Provision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 511
3 Conditions Relating to Health Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 512
3.1 Procedures of Application and Approval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 512
3.2 Professional and Non-professional Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 513
3.2.1 Family Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 514
3.2.2 Benefits for Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 515
3.2.3 Non-profit and Private Long-Term Care Providers . . . . . . . . . . . . . . . . . . . . . . . . . . 518
3.3 Special Forms of Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 520
3.4 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 521
3.4.1 Municipal Income Tax . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 522
3.4.2 Structural Compensation and State Subsidies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 522
3.4.3 Participation of Beneficiaries . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 523
3.4.4 Expenses of the Communities and Provinces . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 524
S. Weber (*)
Bender & Philipp Rechtsanwälte, Munich, Germany
e-mail: sebastian.weber@bender-rechtsanwaelte.de

https://doi.org/10.1007/978-3-319-70081-6_13
496 S. Weber
3.5 Quality Assurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 525

3.5.1 Quality Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 525
3.5.2 Documentation Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 527
3.5.3 National Supervision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 528
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 528
1 Overview
In Sweden, persons who require assistance with the activities of daily living receive
comprehensive help services. This especially includes benefits in kind granted by the
communities and cash benefits granted through social insurance. According to the
Swedish Social Services Act (Socialtjänstlag [SoL]1) the communities are responsi-
ble for meeting the needs for assistance of persons aged 65 and over (Äldreomsorg).
Persons with disabilities (personer med funktionsnedsättning) also receive benefits
corresponding to the provisions of the Social Services Act and to the supplementing
Act concerning Support and Service for Persons with Certain Functional Impair-
ments (Lagen om st€od och service till vissa funktionshindrade [LSS]2), as well as
additional benefits according to the Social Insurance Act (Socialf€orsäkringsbalk
[SFB]3). A differentiation in this context is to be made between benefits granted to
children and adolescents younger than 19 on the one hand, and to adults younger than
65 on the other hand.
To define the term “long-term care dependency” § 9a LSS can be taken into
account in Swedish law. Accordingly, it covers the “basic needs” of persons who
need assistance with their personal hygiene, with meals, dressing and undressing,
communication with third parties or other assistance requiring special knowledge of
the respective disability. “Basic” in this context means predictable needs required on
a daily and continued basis in order to enable persons needing help an autonomous
life.4 These characteristics can also be transferred to a “long-term care dependency”
regardless of disability.
Regardless of age, benefits pursuant to the Swedish Health Care Law (Hälso- och
sjukvårdslag [HSL]5) may also be granted; these benefits may be granted from either
municipal or, particularly, provincial funds. The Social Services Act provides for
special benefits for addicts (Missbrukare6), as well as for crime victims (Brottsoffer)
who require such assistance.
1
Socialtjänstlag (2001:453) as amended by SFS 2011:1576.
2
Lag (1993:387) om st€ od och service till vissa funktionshindrade as amended by SFS 2011:329.
3
Socialf€orsäkringsbalk (2010:110) as amended by SFS 2012:256.
4
Thunved (2012), p. 596.
5
Hälso- och sjukvårdslag (1982:763) as amended by SFS 2011:1576.
6
Further legal bases can be found in Lag (1988:870) om vård av missbrukare i vissa fall as
amended by SFS 2011:737.
Long-Term Care Benefits and Services in Sweden 497
Elderly care is financed as a community benefit and thus mainly from municipal
tax revenues, as well as from State grants. In addition, persons dependent on help
may have to pay contributions; these are levied by the communities and may differ
according to the various calculation bases. Benefits for persons with a disability, on
the other hand, both come as community benefits and insurance benefits financed
from contributions. Particular disability benefits may also be granted past the age of
65 if they had already been claimed before this age. With regard to ensuring daily
assistance services, it can be said that the primary responsibility of the communities
on the one hand and of the social insurance on the other generally depends on the
age of the person requiring help.
This strong role of the communities mainly traces back to the Elderly Care
Reform of the year 1992 (Ädelreform). Elderly care, as well as disability assistance
was subsequently extended from its previous form and now includes persons who
are permanently dependent on care services. As a result, the community also took
over the responsibility for nursing homes.7 The provinces in their role as healthcare
providers merely remained responsible for the actual and financial provision of
medical care and treatment in the narrow sense.8 The regulations on disability
assistance, formerly contained in various acts such as in the Act concerning
Compensation for Assistance,9 were in 2011 incorporated in the fundamentally
reformed Social Insurance Act. An independent regulatory framework geared at the
granting of care services does not exist, however. As yet, long-term care insurance
has not played a major role in Sweden.10
1.1 Social Services Offered by the Communities
The Swedish Social Services Act is a framework act formulating, above all, the
objectives for social services offered by the communities. However, the Act also
contains specific obligations and legal claims.11 The so-called social committees of
the communities in their function as competent authorities can largely decide
autonomously on how to implement these objectives and configure their services.
This way, specific local requirements and needs can be taken into account.12
Persons eligible are those residing in the respective community or, respectively,
persons who have their habitual residence in this community (Chapter 2a, § 1) and
7
Clevesk€old et al. (2009), pp. 31 f.
8
Cf. Regeringens proposition 2009b/10:116, Värdigt liv i äldreomsorgen, p. 62; Wollmann
(2008), p. 130.
9
Lag (1993:389) om assistansersättning, repealed with effect from 01 January 2011 by SFS
2010:111.
10
Cf. Karlsson et al. (2012), p. 254 (272 f.).
11
Regeringens proposition 2009b/10:116, Värdigt liv i äldreomsorgen, p. 20.
12
Socialstyrelsen (2010b), p. 21.
498 S. Weber
who cannot carry out their activities of daily living without assistance within the
meaning of Chapter 4, § 1.
Services offered by the communities range from assistance with the tasks of daily
living in the person’s home (Boendest€od) to recreational services, social programmes,
services related to medical treatment and rehabilitation (Dagverksamheit), as well as
to the provision of specific services and personal care offered by outpatient care
services (Hemtjänst), through to admission to an inpatient facility (Vårdhem). Care
services may also be granted for a temporary period (Korttidsvård/Korttidsboende).
Finally, emergency call systems installed in the private household (Trygghetslarm i
ordinärt boende) are another instrument frequently used in this context.
The LSS further ensures the provision of additional services to persons with a
disability, such as accommodation in suitable types of residential arrangements
outside the family, the financing of short inpatient stays or payment of special
expenses for education or training. Furthermore, persons with a disability may
receive a contribution from their communities to the costs incurred for alterations
necessitated in the home due to their disability.13 Pursuant to Chapter 5, § 10 of the
Social Services Act, support is also granted to persons providing care to “loved
ones” who are ill, old or with disability.
In 2011, 18.8% of the Swedish population were older than 65 years of age
(1,784,668 persons).14 Of these, around 162,300 persons received outpatient care
services in October 2011, while approximately 89,800 persons lived in inpatient
facilities. In this respect, a total of 14.13% of this part of the population received
services based on an established need for assistance with the tasks of everyday
living. Approximately 160,300 persons were provided with emergency call systems
to be installed in their homes; about 10,800 persons made use of recreational
activities and social programmes offered by their communities.15
1.2 Supplementary Social Security Benefits
If the help and assistance actually required cannot be provided in full through
services offered by the communities, persons with a disability are entitled to
additional social security benefits. The Social Insurance Act particularly provides
for a disability allowance according to Chapter 50 (Handikappersättning), a subsidy
for an assistant according to Chapter 51 (Assistansersättning) and, according to
Chapter 52, financial support for the acquisition/maintenance costs of a motor
vehicle (Bilst€od). Parents whose children are with disability within the meaning
of LSS are entitled to claim a so-called temporary parental allowance (tillfällig
f€oräldrapenning) pursuant to Chapter 13 SFB in order to meet the child’s needs for
13
Lag (1992:1574) om bostadsanpassningsbidrag as amended by SFS 2000:527.
14
Cf. Statistika Centralbyrån at www.scb.se/Pages/TableAndChart____26040.aspx [09/08/2012].
15
special care or nursing services during a period of full or partial cessation of

employment. Finally, caregivers within the family may, for a certain period of
time, receive a so-called family carer’s allowance pursuant to Chapter 47 SFB.
In addition, parents may apply for a care allowance (Vårdbidrag) for children
under 19 years of age. According to Chapter 22 SFB this is to cover extra expenses
resulting from disability or illness as well as additional costs in cases where a child
requires special care or nursing services for a minimum of 6 months. After expiry of
the parental allowance a municipal care benefit (kommunalt vårdnadsbidrag) in the
form of child-care subsidy may be granted, provided that the child has reached
his/her first, but not yet third year of age, and has neither attended pre-school nor
been allocated to any other child care service.16
The granting of individual benefits or services in accordance with the various
statutory bases for such a claim are interdependent, meaning that the respective
needs will be met on an overall level, but that benefits and services are mutually
exclusive. In December 2011, 61,390 persons received a disability allowance,
16,047 persons were granted a subsidy for an assistant, and in 1843 cases financial
support for the acquisition/maintenance of a motor vehicle was granted. In accor-
dance with the Social Insurance Act, care allowance was paid for 43,828 children
and adolescents.17 As of April 2011, temporary parental allowance was claimed for
a total of 535,487 calendar days. Since benefits and services may also be claimed on
a daily basis, the number of children involved cannot be determined. Assuming for
payments to have been made for the entire month in each case, this would represent
a total of 17,850 children.18
2 Individual Services and Benefits
The following part describes the individual services that are to cover the need for
help and assistance with the activities of daily living. A differentiation is made
accordingly—in keeping with Swedish law—with regard to the different groups of
beneficiaries, particularly between the “Äldreomsorg”, denoting benefits and ser-
vices for the elderly, and the “st€od och service” for persons with disabilities
(“funktionshindrade”). Excluded from this are rehabilitation services and benefits/
16
Lag (2008:307) om kommunalt vårdnadsbidrag as amended by SFS (2011:1086); also cf. on
long-term care contributions and the school system Weber (2014), pp. 473–530.
17
Cf. statistical data of the F€ orsäkringskassan for disability allowance at http://statistik.
forsakringskassan.se/rfv/html/He_alder_2011.html, for subsidy for an assistant at http://statistik.
forsakringskassan.se/rfv/html/lass_12_1_2011.html, for financial support to keep a motor vehicle
at http://statistik.forsakringskassan.se/rfv/html/bilstod_tab_11_1_2011.html and for long-term
care allowance at http://statistik.forsakringskassan.se/rfv/html/Vb_mott_alder_2011.html [06/06/
2012].
18
Cf. http://statistik.forsakringskassan.se/portal/page/portal/intstat/bof/tfp/tfptot [06/06/2012].
500 S. Weber
services related to accidents at work (Chapter 29 et seq. of the Social Insurance

Act), as well as special services geared to the needs related to school attendance.
2.1 Services for the Elderly
The communities in Sweden have always held a strong position and have, in large
parts, been independent from the State in their decisions; this particularly shows
with regard to services for the elderly. The general responsibilities of the commu-
nities (kommunens ansvar) are derived from Chapter 2 of the Social Services Act
and from § 18 of the Swedish Health Care Law.
However, hardly any specifications for the different services can be derived from
the individual regulations in the Social Services Act. In Chapter 5, § 4 the legislator
has rather formulated a general orientation for elderly care. Accordingly, the
respective services are geared at enabling persons dependent on help a largely
autonomous life in dignity and in a protected environment, as well as their active
and meaningful participation in society. The wellbeing of those involved is explic-
itly laid down as a core objective.19 This also means that persons affected should be
able to live in their own homes for as long as possible.20
Against this background, the communities are, in accordance with Chapter 5,
§ 5, responsible for the provision of senior-friendly housing, outpatient services as
required, as well as for special residential facilities for persons who require assis-
tance beyond the usual scope. This also includes the provision of the necessary
capacities for short-term accommodation in care facilities in the case of a temporary
need for help.21 A particular issue is the right of those involved to make their own
choice and select accordingly. Pursuant to Chapter 5, § 6 the communities also bear
the responsibility for the provision of suitable (nursing care) staff; furthermore, they
are obliged to continuously carry out general needs analyses, to plan at local and
cooperate at regional level, as well as to cooperate with organisations and
associations.22
Derived from § 18 of the Swedish Health Care Law is the obligation of the
communities to guarantee the provision of a “good-quality” health and nursing care
service for persons living in special residential facilities, and to offer adequate
19
“Socialtjänstens omsorg om äldre ska inriktas på att äldre personen får leva ett värdigt liv och
känna välbefinnande (värdegrund). Socialnämnden ska verka f€ or att äldre människor får m€
ojlighet
att leva och bo självständigt under trygga f€
orhållanden och ha en aktiv och meningsfull tillvaro i
gemenskap med andra” (Chapter 5, § 4).
20
Thunved (2012), pp. 163 ff.
21
Regeringens proposition 2005a/06:155, Nationell utvecklingsplan f€ or vård och omsorg om
äldre, p. 80.
22
Cf. on legislative motives Regeringens proposition 2009b/10:116, Värdigt liv i äldreomsorgen,
pp. 24 ff.
outpatient services (Hemsjukvård), provided that the latter falls under the compe-
tence of the communities.
2.1.1 Benefits and Services Pursuant to the Social Services Act
The basis for individual claims is the aforementioned provision of Chapter 4,

§ 1 SoL, according to which persons who are dependent on help with the tasks of
everyday living shall be granted the help required.23 This provision is a blanket
clause that is valid not only for the case of disability, as well as reduced earning
capacity or unemployment, but that also covers assistance needs resulting from age
or other comparable circumstances.24 The provision literally justifies the claim for
“assistance” to support a person’s livelihood or, respectively, to provide for care
services (f€
ors€orjningst€od), as well as to promote “independent living in general”.
Benefits/services are granted in cases where the person in need cannot cover his/her
requirements through his/her own efforts or other means. However, a more specific
definition of the term “long-term care dependency” has not been given.
2.1.1.1 Individual Needs Assessment
It is the task of the municipal authorities to make a needs assessment for each
individual case and to decide on how to meet these needs; decisions in this context
are to correspond with the general objectives of the law and, in particular, are to
make allowances for the requirements and capabilities of each individual.25
Chapter 4, § 1 Para 3 specifies these statutory provisions a little more. The
assistance services are to provide individuals in need with an adequate standard
of living and to increase their chances of leading an autonomous life. This also
means that the assistance services should be of a certain quality and, depending on
the cause of the need, serve the objective of rehabilitation.26 In view of the cross-
nationally varying general circumstances of life, such as shown in the gap between
the southern areas of high population density on the one hand, and the sparsely
populated areas in the north on the other, the provisions of the Social Services Act
have resulted in a clearly varied execution of tasks that is determined by local
factors.27
Whether or not specific assistance services are granted therefore depends on the
individual case. If financial assistance is granted, the pecuniary circumstances of
23
Clevesk€old et al. (2009), pp. 32 f.
24
Thunved (2012), p. 100.
25
Regeringens proposition 2000a/01:80, Ny socialtjängslag, pp. 90 ff.
26
Thunved (2012), p. 103.
27
Also Trydegård and Thorslund (2010), p. 495 (497 f.); for the health care system also Lindgren
and Lyttkens (2010), p. 81 (83).
502 S. Weber
the person dependent on help are assessed and benefits adjusted accordingly. If out-
or inpatient care services are required, however, the pecuniary circumstances of the
person involved are not taken into account (Chapter 4, § 1 Para. 2), a regulation that
has been effective as of 1 March 2010.28 This change in the law had become
necessary, as the judicature had not derived any statutory prohibition of such an
assessment from the previous version of Chapter 4, § 1, even though the legislator
had intended for this to be the case.29 However, pursuant to Chapter 8 SoL, the
communities are competent to stipulate co-payments for individual services to be
paid by the beneficiaries depending on their economic capacity.
2.1.1.2 Catalogue of Services Commonly Offered
Over the course of time and based on the above, a catalogue of services commonly
offered has developed: low-threshold services in this context include the installation
of emergency call systems in the person’s home (trygghetslarm i ordinärt boende),
daytime services promoting leisure activity, social interaction, as well as treatment
and rehabilitation services outside the person’s home (dagverksamheit), and help
with the activities of daily living in the person’s own household (boendest€od). The
latter is particularly directed at persons with psychological disabilities and, by
offering practical social support, seeks to strengthen the capability of persons
affected to look after themselves.30 Personal care and other personal services are
offered by mobile nursing service providers (hemtjänst). In the case of a temporary
need for assistance and nursing care, the appropriate services related to treatment and
rehabilitation are offered (korttidsvård/korttidsboende). Moreover, special inpatient
living arrangements exist (särskilda boendeformer) for cases where assistance is
required to such an extent that it can no longer be provided in the person’s home
and/or where the person involved expressly wishes to be accommodated in a care
facility.31 As a rule, these assistance services meet the respective requirements. The
statistical coverage of services provided is also effected using this typology.32
However, due to the loose wording of the law this catalogue cannot be regarded as
exhaustive. The communities are rather obliged to grant and provide the respective
assistance required in the individual case. Should a community not have the capacity
to provide such services, it may also grant the person in need an appropriate cash
28
Lag 2010:52; for this see Regeringens proposition 2009a/10:57, Behovsbed€ omning av annat än
ekonomiskt bistånd enligt socialtjänstlagen; on history also see Regeringens proposition 2000a/
01:80, pp. 95 f.
29
Regeringsrätten (now H€
ogsta F€
orvaltningsdomstolen), RÅ 2008 ref. 38, Judgment of 23 September
2008 (ref.: 6371-07).
30
On the understanding of the term Socialstyrelsen (2012b), p. 14.
31
Thunved (2012), p. 166.
32
Socialstyrelsen (2012b), pp. 16 ff.
benefit, provided that the beneficiary will thus be able to organise the provision of the
respective service through other sources.33
2.1.1.3 Evaluative Overall Analysis
In their individual decisions, the social committees are to carry out an evaluative
overall analysis that is amenable to judicial review.34 In this way, according to a
decision of the Supreme Administrative Court of Sweden, a right to accommoda-
tion in a special nursing facility may exist if, in addition to the problems related to a
person’s physical condition, the person is burdened with a feeling of insecurity and
social isolation and is therefore no longer able to maintain an adequate living
standard.35
In line with legislative objectives, particular care has been taken in the devel-
opment and the granting of such assistance services to make sure that as many
persons as possible can continue to live in their own homes, for instance through the
provision of outpatient services, especially during the evening and night.36
The loose wording of the statutory basis for the claim has also entailed legal
clarifications in individual cases. The Supreme Administrative Court has decided,
for instance, that the activities of window cleaning and hanging up curtains at
certain intervals come under the terms of “independent living in general” and
“adequate living standard”. Therefore, activities of this type are to be provided in
the form of hemtjänst. Since it is not financial support that is to be provided, the
decision regarding the granting of the service is to leave the economic situation of
the beneficiary out of account. The economic situation of the beneficiary,
i.e. his/her ability to have the relevant services provided by third parties, is to be
taken into consideration only if co-payments come into question and an amount
needs to be determined.37
With regard to the right to accompaniment on walks, the Supreme Administra-
tive Court has furthermore decided that a community may not shirk its duty by
referring persons in need of such assistance to existing voluntary services. Rather, it
is the communities that are obliged to provide the relevant social services and they
are therefore also responsible for the professional provision of such services.38 This
does not mean that resort to other charitable institutions is impossible, and the
community is also free to make use of assistance offered by intermediaries; in any
case, however, and according to the judicature, the community remains the author-
ity against whom a claim can be introduced.
33
Cf. also Blome et al. (2008), p. 191.
34
Cf. Clevesk€old et al. (2009), pp. 268 ff.
35
Regeringsrätten, RÅ 2007 ref. 86, Judgment of 21 December 2007 (ref.: 2331-04).
36
Thunved (2012), p. 163.
37
Regeringsrätten, RÅ 2008 ref. 38, Judgment of 23 September 2008 (ref.: 6371-07).
38
Regeringsrätten, RÅ 2007 ref. 43, Judgment of 13 September 2007 (ref.: 339-06).
504 S. Weber
2.1.2 Benefits and Services Pursuant to the Swedish Health Care Law
The benefits and services of the communities pursuant to the Social Services Act
are supplemented by the municipal health and care services.
According to § 18 of the Swedish Health Care Law (HSL), the communities are
primarily responsible for the provision of health and care services in the communal
daycare facilities and the special municipal (nursing) residences for elderly persons
established according to Chapter 5, § 5, Para 2 of the Social Services Act (SoL).
This also applies to residential facilities for persons with disabilities (Chapter 5,
§ 7, Para 3 SoL). However, the communities are not obliged to provide medical
services. According to special agreements between the respective province and its
communities (§ 26d HSL), the provinces provide medical services within the
framework of the municipal health and care services.39
Apart from that, it is generally the province (landsting) that is responsible for the
provision of health care and nursing care. This also includes outpatient health and
nursing care provided in private households (hemsjukvård). According to
§ 18 Paras. 2 and 3 HSL, however, the communities can take over this responsibility
from the province—the provision of medical services excepted—and in this way
built up local structures.40 In 2011, 165 out of 290 communities made use of this
possibility.41 In practice, this often leads to the circumstance that outpatient ser-
vices under the Social Services Act and the Swedish Health Care Law are grouped
together in organisational terms. “Hemtjänst” and “hemsjukvård” are in this context
subsumed under the common term “hemvård”.42 Depending on which individual
services are provided by adequately trained personnel, if available, an allocation
can be made assigning these services to the legal bases. This is also taken into
account in the wording of approval notifications. In this respect, it is the responsi-
bility of the municipal health and care services to provide patients with medication,
wound treatment, injections, tube feeding or rehabilitation measures assisted by
health care specialists.43 A difference is made in this context between health and
care services (sjukvård, omvårdnad) and “personal care” (personlig omvårdnad);
ultimately, however, a clear dividing line cannot be drawn.44
The coordination of services between the province and the communes is effected
through a common authority. Apart from the services under the Social Services Act
and the Health Care Law, this coordination also includes further services geared at
39
Thunved (2012), pp. 159 f.
40
Regeringens proposition 2009b/10:116, Värdigt liv i äldreomsorgen, pp. 61 f.; Thunved (2012),
p. 159/167; in detail SOU (2011) 55, Kommunaliserad hemsjukvård.
41
42
Cf. e.g. the community of Uppsala at http://www.uppsala.se/hemvard [17/08/2012].
43
Cf. the city of Gothenburg respectively at http://www.goteborg.se [17/08/2012] under “Seniorer/
St€od i hemmet/Hemsjukvård”.
44
Cf. e.g. the community of Askersund at http://www.askersund.se [17/08/2012] under
“Kommunalverksamhet/Äldrevård, st€ od och omsorg/Hemtjänst och hemsjukvård”.
persons with disabilities, children and adolescents, as well as addicts, and it even
includes psychiatric coercive measures.45 According to Chapter 2, § 7 SoL, the
specific measures of both services are to be individually adapted for and determined
in collaboration with the person in need.
2.2 Benefits and Services for Persons with Disabilities
Further benefits/services according to the provisions of LSS may be granted to

persons who are affected by developmental disorders, autism or similar disorders
(No. 1) or by comprehensively and permanently reduced mental capabilities due to
brain damage resulting from external force or illness suffered in adulthood (No. 2);
further, to persons with other permanent physical or psychological disabilities
which are clearly unrelated to the natural ageing process (No. 3).
2.2.1 Special Support and Services
According to § 7 LSS, persons under this category are entitled to special support
and services listed in the catalogue of § 9 LSS. This includes counselling (No. 1),
personal assistance (No. 2), accompaniment services (No. 3), contact persons
(No. 4), short-term nursing care (No. 5), short stays in care facilities (No. 6),
short-term supervision after school hours for school children older than 12 years
of age (No. 7), particular living arrangements with special services for children and
adolescents (No. 8), as well as adults (No. 9), and services related to daily
scheduling and recreational activities (No. 10).
For help required with the activities of daily living, i.e. particularly for assistance
with personal hygiene, with meals, dressing and undressing, communication with
third parties or other assistance requiring special knowledge of the respective
disability (§ 9a LSS), it is especially the granting of personal assistance services
according to § 7 No. 2 LSS that is of significance. The objective is to provide a form
of support that enables the person affected to live his/her life as autonomously as
possible in a reliable and protected environment. This requires continuous assis-
tance through a limited number of persons whom the person in need particularly
trusts; this is also the reason why the beneficiaries should be centrally involved in
the selection of those that are to assist them.46
Insofar as this need for assistance does not exceed more than an average of 20 h
per week, §§ 16, 9 No. 2 LSS stipulates that it is the municipal social services that
are obliged for the provision of such assistance. It may be provided either as a
45
Lag (2003:192) om gemensam nämnd inom vård- och omsorgsområdet as amended by SFS
2004:190; on this see also Clevesk€
old et al. (2009), pp. 76 f.
46
Thunved (2012), pp. 546 ff.
506 S. Weber
benefit in kind through the municipal services, or as a cash benefit in terms of a

personal budget. If the need exceeds 20 h per week, the person affected is entitled to
a cash benefit called subsidy for an assistant in line with Chapter 51 of the Social
Insurance Act (SFB). If such a subsidy is applied for, the competent community will
be heard before approval of the subsidy and, subsequently, it will be submitted a
notification of approval (Chapter 51, § 21 SFB). In such cases, the community is
obliged to reimburse the social insurance for expenses incurred for the first 20 h of
assistance (Chapter. 51, §§ 22, 23 SFB).47
2.2.2 Subsidy for an Assistant
The regulations of the Social Insurance Act regarding the subsidy for an assistant
are based on LSS. According to Chapter 51, § 2 SFB, persons entitled to such
assistance must be insured and meet the requirements of § 1 LSS. A lower age limit
does not apply. Persons aged 65 and older may be entitled to subsidy for an assistant
if the subsidy had already been granted before this age (Chapter 51, § 8 No. 1 SFB;
§ 9b No. 1 LSS). However, persons receiving care in an assisted living facility are
excluded from such an entitlement.
According to Chapter 51, § 3 SFB, a subsidy for an assistant is granted to persons
who require help with the activities of daily living in terms of the aforementioned §
9a LSS to an extent exceeding 20 h per week. The subsidy for an assistant is granted
for a specific purpose and may therefore only be used for the payment of personal
hourly assistance services and expenses related to the latter (Chapter 51, § 4 SFB).
It is possible, however, to make use of assistance hours beyond the stated scope
regarding the activities of daily living. This applies to shopping and leisure activ-
ities, for instance, and even to assistance with a person’s gainful activity.48
The subsidy for an assistant is granted for a specified number of hours per week or
month for a maximum period of 6 months (Chapter 51, § 9 SFB). As a rule, a needs
analysis is carried out every 2 years. The granting of benefits with retrospective effect
is possible only with effect from the month preceding the application (Chapter 51,
§ 7 SFB). The number of assisted hours may be extended upon each new approval
(Chapter 51, § 10 SFB); however, persons aged 65 and older are excluded from this
possibility. According to Chapter 51, § 5 SFB the subsidy is not granted for the
provision of health care services under the Swedish Health Care Law.
The subsidy for an assistant is paid out on a monthly basis as a lump sum
determined each year by the government in reference to the cost development
(Chapter 51, § 11 Subpara. 1 SFB). For 2012, the amount for 1 h of assistance was
set at 267 SEK. Given particular circumstances that require higher expenses for
the assistance necessary, the lump sum may be raised by up to 12% (Subpara. 2).
47
Cf. also Meyer (2011), pp. 119 ff.
48
Cf. F€orsäkringskassan, Faktablad: Assistansersättning, dated: 22.12.2011, available at: http://
www.forsakringskassan.se [13/06/2012].
For 2012, the maximum amount granted for 1 h of assistance was therefore set at
299 SEK.49
If the person requiring help claims assistance services from the community, the
subsidy for an assistant can be paid directly to the community (Chapter 51,
§ 17 SFB). Payment to third parties is also possible (Chapter 51, §§ 18, 19 SFB).
2.3 Disability Allowance
Apart from subsidy for an assistant the Social Insurance Act also provides for
tax-free disability allowance. According to Chapter 50, § 4, the latter can be
claimed by an insured person whose disability requires, for a “considerable” period
and to a considerable extent, assistance with the activities of daily living (No. 1) or
continuous assistance with the performance of a gainful activity (No. 2), or entails
other significant disability-related additional expenses (No. 3). In this context,
students have the same rights as gainfully employed persons (§ 6). If a person
needs more than one assistance service, an overall calculation is made and services
based on different legal provisions are calculated against each other. Disability
assistance thus covers those needs related to activities of daily living that are not
met by the granted personal assistance service or other services/benefits.50
At the earliest, benefits/services are granted as of July of the year in which the
insured person turns 19 (§ 8). The benefits/services are basically granted with effect
from the month in which in an insurance claim has arisen. However, with retroac-
tive effect they are granted for a maximum of 6 months preceding the application.
Generally, these benefits/services are granted for a limited period of time (§§ 9, 10).
The need for help, as well as the scope of benefits granted, is to be reassessed in
relation to the granting of sick pay, of a particular activity compensation for persons
aged 30 and younger, or of an old-age pension (§ 14). Special regulations apply for
blind persons and persons with severe hearing impairments (§§ 2, 3, 7, 12, 13).
As with many benefits/services of the Swedish social insurance, the calculation
basis for disability allowance is the so-called price base amount.51 It is based on
the general price development and is, as a rule, adjusted annually to the inflation
rate. The price base amount is also used for determining the contribution assess-
ment ceiling in the health and accident insurance, or for needs assessments in the
field of social welfare.52 Depending on the scope of assistance required or,
respectively, of the disability-related additional expenses, the disability allowance
49
Cf. F€orsäkringskassan, Faktablad: Assistansersättning, dated: 22.12.2011, available at: http://
50
Cf. F€orsäkringskassan, Faktablad: Handikappersättning, dated: 22.12.2011, p. 4; available at:
http://www.forsakringskassan.se [13/06/2012].
51
orsäkringsbalk, Chapter 1, § 7.
Cf. on its calculation Socialf€
52
In 2011 the price base amount was 42,800.00 SEK; in 2012 it was 44,000.00 SEK.
508 S. Weber
amounts to an annual 69%, 53% or 36% of the price base amount.53 It is paid out
in equal instalments on a monthly basis (§§ 11, 16). What is relevant is not the
degree of disability, but the specific need for help caused by the disability or,
respectively, the additional costs incurred in this context. Thus, for instance, the
costs for a house cleaner may also establish an entitlement to a proportionately
high disability allowance.54
Disability allowance may, in this respect, also finance assistance with the
activities of daily living. This applies to nursing activities, dressing and undressing,
cooking and housekeeping chores (shopping, cleaning, laundry). It further includes
assistance with getting to work or to an educational establishment, or assistance at
the person’s place of work.
Recognised as constitutive for the eligibility of benefits for additional expenses
are, for instance, the costs for aids and appliances, consumables or special foods, if
a direct connection exists between the disability and the expenses and if the costs
are of a type commonly not incurred. If healthcare and nursing or the provision with
medicinal products entail costs that are not covered through other schemes, it is
possible for persons in need to receive adequate disability allowance. Beyond that,
travel costs (e.g. to work) and the costs for special purchases (e.g. disability-
friendly household appliances) may also be claimed for.55
The right to disability allowance principally remains in force during a stay in
hospital or in a care facility if a maximum period of 6 months is to be assumed.
Should the stay exceed this period of time, the right to disability allowance only
applies to days not spent in the hospital or care facility. If the person affected is
accommodated in a form of assisted living or a residential home for persons with
disabilities, disability allowance may only be claimed to the extent not covered by
the relevant form of assisted living.56
2.4 Benefits and Services for Children and Adolescents
In order to meet the special care and nursing requirements of children and adoles-
cents within the family, their parents receive particular benefits. Worth mentioning
in this context are special care allowances and the possibility of receiving a
temporary parental allowance.
53
In 2012 disability allowance accordingly amounted to 15,840 SEK (36%), 23,320 SEK (53%) or
30,360 SEK (69%).
54
Cf. F€orsäkringskassan, Faktablad: Handikappersättning, dated: 22.12.2011, p. 2; available at:
55
Cf. F€orsäkringskassan, Faktablad: Handikappersättning, dated: 22.12.2011, pp. 2 f.; available at:
56
F€orsäkringskassan, Faktablad: Handikappersättning, dated: 22.12.2011, p. 3; available at: http://
2.4.1 Care Allowance, Care Benefit (Child-Care Subsidy)
Pursuant to Chapter 22, § 3 No. 1 of the Social Insurance Act, insured parents may
receive a monthly care allowance if their ill or disabled child requires special care or
nursing for a minimum period of 6 months. The full care allowance amounts to 250%
of the price base amount, i.e. 110,000 SEK in the year 2012. In accordance with the
scope of special care/nursing services required, the allowance is paid on a pro rata
basis (Chapter 22, § 11 SFB). The allowance can be granted until June of the year in
which the child turns 19 (Chapter 22, § 6 SFB). The allowance is to be granted on a
temporary basis and is subject to interim reassessments (Chapter 22, §§ 7, 17 SFB).
If the illness or disability of the child entails particular material costs, these can
also be reimbursed according to Chapter 22, § 3 No. 2 SFB. Costs of this type may
arise, for instance, from a necessary change of residence, assistive equipment or
special foods as required. Such additional costs must exceed the threshold value of
18% of the price base amount in order to be reimbursed separately. The actual amount
of the reimbursement is calculated in accordance with a legally stipulated scale laid
down in Chapter 12, § 12 SFB and is paid out in twelve monthly instalments.57 If care
allowance is applied for exclusively with a view to the reimbursement of additional
costs, reimbursement is paid only after a minimum of 36% of the price base amount
has been reached (Chapter 12, § 13 SFB). Should the actual additional costs arising
from illness or disability exceed the full care allowance by at least 18% of the price
base amount, they will also be reimbursed (Chapter 12, § 14 SFB).
In December 2011, care allowance was granted for 43,828 children. Subsidies
for additional costs were only granted in 8261 cases, the lowest rate of 18% of the
price base amount being the most commonly paid (6102 cases). The maximum rate
of 69% of the price base amount was granted to 208 persons.58
In accordance with a separate law59 the communities are free to grant their own
care benefit in the form of a child-care subsidy. For this to apply, the child must be
registered in the community and have completed his/her first, but not yet third, year
of age, and neither attend a nursery school nor any other pedagogical care facility
(§ 3 of the law). The benefit is to be paid after expiry of a parental allowance, as
long as the latter was paid at least at a level corresponding to the basic amount to be
granted (180 SEK per day, Chapter 12, § 23 SFB). The simultaneous receipt of a
range of other social benefits in support of the parents is ruled out, however (§ 5 of
the law). The care benefit per child amounts to a maximum of 3000 SEK per
calendar month (§ 9 of the law). A partial grant is possible in cases where the child
is partially provided with care through other schemes (§ 8 of the law).
57
With costs of 18% up to 36% of the price base amount (2012: 7.920–15.840 SEK), 18%, namely
7.920 SEK, are reimbursed; with costs of 36% up to 53% of the price base amount 36% are
reimbursed; with costs of 53% up to 69%, 53% are reimbursed and with costs of 69% and more,
69% are reimbursed.
58
Cf. http://statistik.forsakringskassan.se/rfv/html/Vb_mott_merk_2011.html [14/06/2012].
59
Lag (2008:307) om kommunalt vårdnadsbidrag as amended by SFS (2011:1086).
510 S. Weber
The responsibility to decide on the introduction and amount of the grant, as well
as on the annual expenditure lies with the communities themselves. In the second
half of 2011 therefore, only 52.62% of the 343,971 children between their first and
third year of age were registered in a community that had introduced the care
benefit. Of these, 6694 children (3.7%) received a care benefit.60
2.4.2 Temporary Parental Allowance
Temporary parental allowance is granted in different constellations in accor-

dance with the provisions of Chapter 13 of the Social Insurance Act. Parents are
entitled to benefits if they cannot, due to the particular care/nursing requirements
of their child resulting from a serious illness or disability, engage in a gainful
activity. According to Chapter 13, § 33 SFB, the parental allowance amounts to
approximately 80% of the income on which the sick pay is based, but not to more
than 7.5 times the price base amount. Therefore, the maximum parental allow-
ance per day in 2012 amounted to 702 SEK before tax. The parental allowance is
granted proportionally in accordance with the actual loss of contractually owed
gainful activity (Chapter 13, § 5 SFB). If a care allowance is already granted
according to Chapter 22 SFB, a temporary parental allowance for the same case
of need is ruled out.61
It is, in the first place, parents whose child has completed his/her 12th but not yet
16th year of age that are entitled to benefits (Chapter 13, § 22 SFB). A precondition
for benefits to be granted is a need for care or nursing exceeding the expenditure
usually required for children of this age. This parental allowance is provided for up
to 60 days per calendar year per child and, in particular cases, for an additional
60 days (Chapter 13, § 25 SFB).
Beyond that, parents of children who fall within the scope of LSS can receive a
temporary parental allowance for additional days. This applies to a maximum of
10 days per calendar year, during which they participate in training geared at the
special needs of their child, visit the school or care facility of their child or take part
in an organised activity (Chapter 13, §§ 26, 28 SFB). Furthermore, parents can
receive a temporary parental allowance up to their child’s 21st birthday if the latter
develops a further disease or if the condition of the child deteriorates (Chapter 13,
§ 27 Subpara. 1 SFB). If the child attends a special grammar school or a secondary
school for children with special needs, a temporary parental allowance can be paid
up to the end of the summer term of the year in which the child turns 23 (Subpara.
60
Cf. evaluation by Statistika Centralbyrån, Nyttjande av kommunalt vårdnadsbidrag, p. 24;
available at http://www.scb.se/statistik/_publikationer/BE9999_2010A01_BR_BEFT1102.pdf
[15/02/2012].
61
Cf. F€orsäkringskassan, Faktablad: Tillfällig f€
oräldrapenning, dated: 12/06/2012, p. 1; available
at: http://www.forsakringskassan.se [14/06/2012]; for further calculation details see also Weber
(2014), pp. 473–530.
2). In this respect, too, parental allowance is provided for up to 60 days and, in
particular cases, for an additional 60 days (Chapter 13, § 28 SFB).
In the case of a particularly serious illness of a minor child the previously
temporary allowance will be granted indefinitely (Chapter 13, §§ 30, 31 SFB). In
such cases, the illness must be evidenced by a corresponding medical certificate.
According to the legislative material, a particularly serious illness means an illness
that obviously threatens the life of the child, such as cancer, an eating disorder or
self-injurious behaviour.62 According to the judicature, however, immediate danger
to life is not a relevant criterion in this context. Accordingly, temporary parental
allowance is to be granted for a period of time during which treatment for the child
is provided and the omission of which would endanger his/her life, or for a period
during which the parents receive training required for the proper medical assistance
of their child.63
2.4.3 Basic Principles Concerning Service Provision
The service concept that is based on both SoL and the other laws regarding benefits
and services is characterised particularly by its holistic approach. Accordingly, the
illustrated services shall not serve to ward off, by way of isolated measures, the
individual circumstances causing assistance needs, but are to support affected
persons in their general individual and social situation as well as in their living
environment. This is subject to the condition that the person affected accepts the
respective services autonomously and of his own accord. The objective is to effect a
“normalisation” of the person’s living situation and, at the same time, to ward off
the risk of isolation or stigmatisation.
The services per se as well as the circumstances of their provision shall, if
possible, show a certain degree of continuity and a high level of flexibility at the
same time, in order to correspond to the individual requirements of the person in
need. The predominantly municipal performance of duties is to make sure that the
respective services required are provided locally where possible, which in turn shall
enable persons in need to continue to live and be nursed in their own households for
as long as possible. Service provision outside their own households, particularly
admission to special residential facilities, is to be put off for as long as possible.64
Just as the formulation of the core value in the field of elderly care pursuant to
Chapter 5, § 4 SoL, also § 6 LSS adopts this direction insofar as—based on the
responsibility of society for all its members—it creates a claim for every individual
to a self- and co-determined, as well as dignity-preserving, provision of required
assistance services.65
62
Regeringens proposition 2005b/06:159, Vissa socialf€orsäkringsfrågor, pp. 17 f.
63
H€ogsta F€orvaltningsdomstolen, HFD 2011 ref. 3, Judgment of 01 February 2011 (ref.: 5542-09).
64
Cf. respective statements in Regeringens proposition 1979/80:1 om socialtjänsten, pp. 207 ff.;
summarised in Socialstyrelsen (2010b), pp. 22 f.
65
Holgersson (2008), pp. 100 f.
512 S. Weber
Along with the administrative procedure that decides on whether or not services are
granted, service provision as such by professional and—especially within the
family—non-professional service providers is of particular importance. In the
following, the approval procedure for service providers shall be addressed as well
as their certification and supervision, the contractual relations between the parties
where applicable, and also the different forms of management of service provision
including their financing and quality assurance.
3.1 Procedures of Application and Approval
Applications and approval procedures for the service in question have to be

submitted to the respective competent public authority. These authorities are
subject to the fundamental public principles of administrative action (Chapter 2,
§ 1 TF66), of objectivity with regard to the application of the law and to decisions
(Chapter 1, § 9 RF67), and of the principle of equality (Chapter 2, § 2 KL68), and
must comply with their service function according to §§ 4 and 5 FL.69
According to Chapter 11, § 1 SoL, it is the duty of the local communities to
assess a situation of need as soon as it becomes known, and take appropriate
decisions. This duty not only extends to the range of services covered by SoL but
also to services granted on the basis of other legal regulations to the extent to which
they are covered by the competence of the community.70 This also applies to the
health and care services and may require an exchange of information with the
province. As a rule, the administrative procedure is initiated by an application or
notification submitted by the person in need of assistance or by the relatives or
carers. Of major relevance, however, is the fact that the authority is informed of the
case of need in order to allow the community to take administrative action; this does
not necessitate any written statement by the person concerned or a precise descrip-
tion of the service required. At the same time, the community is also obliged to
clarify the facts and to specify the request of the party concerned if necessary.71 The
decision taken by the community as well as the justification thereof are to be
documented in writing (Chapter 112, § 5 SoL). In this regard, the community
must first base its decision on an application for assistance pursuant to Chapter 4,
§ 1 SoL; in the following, it can examine whether and to what extent monetary
66
Tryckfrihetsf€orordning (1949:105) as amended by SFS 2010:1409 (freedom of press).
67
Regeringsformen (19:74:152) as amended by SFS 2010:1408.
68
Kommunallag (1991:900) as amended by SFS 2012:390.
69
F€orvaltningslag (1986:223) as amended by SFS 2009:798.
70
Thunved (2012), p. 262.
71
Clevesk€old et al. (2009), pp. 116 ff.
benefits according to Chapter 4, § 2 SoL might be granted.72 When granting

individual benefits and services and their specific scope, the communities are,
owing to the broadly formulated foundations for claims, provided with a major
freedom of evaluation which is, however, fully subject to judicial review.73 As to
the procedure itself, the rules relating to the Administrative Procedure Act
(F€orvaltningslag74) must also be observed (Chapter 11, § 8 SoL). Every person
involved has the right to appeal against the community’s decision (§ 7a FPL75).
The procedural rules governing social insurance can be found in Chapters 110 to
113 SFB. According to these rules the insurance benefits and services have to be
applied for in writing (Chapter 110, § 4 SFB). The relevant forms are available on
the homepage of the insurance fund. The community, too, can announce a demand
and apply to the insurance fund for a subsidy for an assistant, for example. The
insurance fund will then contact the person involved in order to identify the specific
care requirements.76 As to the individual services, the law provides for the presen-
tation of specific documents and certificates. Thus, an allowance to family carers
according to Chapter 110, § 25 SFB will only be granted on presentation of a
medical certificate confirming long-term care requirements due to disease. Also
with respect to social insurance decisions (Chapter 112 SFB) the right exists to
appeal to the administrative courts (Chapter 113, § 14 SFB).
3.2 Professional and Non-professional Service Providers
The entitlements to care service provision set out before show that, in the Swedish
view, the task is mainly a public one that is particularly incumbent upon the
communities. Accordingly, the role of family carers had hardly been given any
attention for decades.77 There are nearly no statistical surveys on this topic. At the
same time it is assumed that families play a major role in the provision of care to
relatives. In the meantime, this has also proved true for voluntary work in non-profit
organisations.78
72
Riksdagens Ombudsmän (JO), Decision of 10 August 2009 (No. 3309-2008).
73
Cf. also Wollmann (2008), p. 131.
74
F€orvaltningslag (1986:223) as amended by SFS 2009:798.
75
F€orvaltningsprocesslag (1971:291) as amended by SFS 2011:1304.
76
Cf. F€orsäkringskassan, Faktablad: Assistansersättning, dated: 22/12/2012, p. 2; available at:
77
Johansson (2004), p. 7.
78
Cf. on this Dahlberg (2004), pp. 181 ff.; Lundstr€
om and Svedberg (2003), pp. 217 (225 ff.).
514 S. Weber
3.2.1 Family Carers
In the area of elderly care it has been found that, in 2000, 66% of the assistance
offered to persons aged over 75 was provided by relatives or other non-professional
carers. Further 16% were provided both “informal” services and those delivered by
professional carers. Only 18% were looked after by professional carers alone.
Compared to a survey conducted in 1994, family care has increased further while
exclusive care provision through care services has declined by 10%.79 These figures
coincide with other statistical analyses according to which it was assumed that in
2003 53.6% of the persons in need of care aged over 65 were exclusively looked
after by relatives, while 12.3% were exclusively provided care by professional
carers, and 21.7% were provided care services through a combination of both.80
A completely different picture is shown, however, by deviating analyses assigning a
proportion of a mere 14% to care provided by relatives and about 85% to care
provided through municipal care services.81
What constitutes a problem with respect to these statistical data is the individual
understanding of the terms “caregiving activity” and “long-term care depen-
dency”.82 Depending on the person and the previous distribution of domestic and
family duties (between spouses for example), support services like preparing a meal
or doing the shopping may or may not, and by some sooner rather than later, be
perceived as a caregiving activity and a change in the allocation of tasks as a
consequence of long-term care dependency. The above-stated figures are likely to
change as soon as a narrower “concept of long-term care” is used (e.g. assistance
over a longer period of time including weekly help with the activities of daily living
such as washing, dressing, eating and going to the toilet). Based on this assumption,
it was for example concluded with regard to persons aged over 64 that only 4% of
the respondents made use of in-home care, and about 13% drew on professional
care services.83 As a result it can, however, be observed that the caregiving
activities of relatives and other non-professional persons play a significant role
also in Sweden.84
79
Sundstr€om et al. (2002), p. 350 (353).
80
Blome et al. (2008), p. 202.
81
E.g. Trydegård (1998), p. 13 (24 f.).
82
On this see Blome et al. (2008), pp. 196 f.
83
Haberkern and Szydlik (2008), p. 78 (90); cf. also comments in Dienel (2007), p. 281.
84
Cf. Regeringens proposition 2005/06:115, Nationell utvecklingsplan f€ or vård och omsorg om
äldre, p. 27; see also Fukushima et al. (2010), pp. 9 ff., available at http://www.ancien-
longtermcare.eu/node/27 [26/08/2012]; Herlitz (1997), pp. 117 ff.; Johansson et al. (2003),
p. 269 (273 ff.); Thunved (2012), pp. 183 f.; Blome et al. (2008), pp. 202 f.
3.2.2 Benefits for Caregivers
In the light of this actual significance, and with a view to the financial framework
conditions for the provision of long-term care services, Sweden has “rediscovered”
the concept of family.85 As a consequence, incentives have been created by the
legislator for relatives to provide long-term care themselves. There is, however, no
legal obligation for children to provide long-term care to their parents. Neither is
there any obligation according to matrimonial law to provide personal long-term
care to the spouse. Solely Chapter 6, § 2 of the Children and Parents Code
oräldrabalk)86 might create an obligation of parents towards their children
(F€
under 18 years of age, with the regulations of LSS indicating that parents are
ultimately responsible only for the actual provision of help services, regardless of
whether these are delivered by themselves or by a third party.87 Entitlement to
social benefits has therefore been used as an incentive for relatives and other
non-professionals to provide care.88 The foundation of a national competence
centre for relatives in 2008 finally points to the significance of family caregivers,
with the centre serving both the exchange of information and practical experience
and documentation and academic research.89
3.2.2.1 Services Offered by the Communities
According to Chapter 5, § 10 SoL the social authorities must help relatives with the
provision of long-term care services. With this provision, which entered into force
on 1 July 2009, the cooperation between family caregivers and professional
(municipal) carers has also been acknowledged in normative terms.90 However,
this cooperation is subject to the local conditions in the same manner as is the
municipal service delivery. That is why, in the individual case, there may be a great
disparity with regard to what is actually possible.
Typical forms of support are the temporary replacement of caregivers in the
daily care through municipal services (Avl€osning in hemmet) and temporary
admission of the person dependent on care to a special nursing home (Avl€osning
via boende or Växelboende). The second option will especially be resorted to in
cases where alterations to the home of a person become necessary to suit his/her
special needs or in the case of palliative care. Finally, to take some of the burden off
85
Johansson (2004), p. 7.
86
F€oräldrabalken (1949:381) as amended by SFS 2012:319.
87
Regeringens proposition 2008b/09:82, St€ od till personer som vårdar eller st€
odjer närstående,
pp. 12 f.
88
Cf. Blome et al. (2008), p. 180.
89
Cf. homepage of the centre at http://www.anhoriga.se [28/08/2012].
90
Cf. on legislative motives Regeringens proposition 2008b/09:82, St€od till personer som vårdar
eller st€odjer närstående.
516 S. Weber
relatives, long-term care in the home may be provided in through third parties at
special day- or night-times (Avl€osning via dag-/nattverksamhet or, respectively,
dagvård). According to SoL, this kind of support for relatives corresponds to the
entitlements of the persons in need of care. The scope of services to be granted shall
be laid down in accordance with the ability and readiness of the relatives to provide
long-term care. This is also what the law refers to when stating that a person’s needs
have to be fulfilled that cannot be covered “otherwise” (Chapter 4, § 1 SoL). It has
recently been observed that the communities take this as a basis to oblige families to
take more responsibility with respect to the provision of minor long-term care.91
Moreover, the communities may also contribute to the costs incurred by the
family caregiver (Anh€origbidrag, Hemvårdsbidrag, Omvårdsbidrag). As a rule,
such a financial contribution assumes that the municipal services are not in a
position to provide the relevant long-term care services themselves. However, a
legal entitlement to such a financial contribution does not exist. Pursuant to the
communities’ obligations stated in Chapter 4, § 1 SoL it is possible for them to
decide themselves under what conditions such a financial contribution is to be made
(§ 2). To this end, a regulation is generally adopted at municipal level. As with
benefits in kind, monetary benefits also presuppose an appropriate “decision to
provide assistance” in accordance with SoL. As per 1 October 2007, about 5200
relatives were granted such a monetary benefit with the number of recipients
tending to rise.92
It is also possible for the community to formalise the caregiving activity by
providing the carer with an employment setting (Anh€origanställning). This gen-
erally applies to caregivers of working age who perform a caregiving activity and
are therefore not engaged in gainful employment or only to a limited extent.
Family carers are employed pursuant to Chapter 4, § 1 SoL, too, and are therefore
considered as part of the home care services (Hemtjänst). The employment
relationship is based on the provisions of public service employment. As per
1 October 2006, about 1900 persons were engaged in such an employment
relationship, with the number declining.93
Moreover, consulting centres, meeting places and self-help groups have been
established by the communities to promote mutual support, further training and
information exchange, also with the help of professionals. Finally, technical aids
and training offers are also worth mentioning in this context.94
91
Blome et al. (2008), pp. 213 f.
92
Regeringens proposition 2008b/09:82, St€ od till personer som vårdar eller st€ odjer närstående,
pp. 20 f.; for a detailed examination taking the example of Gothenburg, see Glader and
Lindahl (2007).
93
Regeringens proposition 2008b/09:82, St€ od till personer som vårdar eller st€
odjer närstående, p. 19.
94
Cf. also for an overview of possible benefits/services Regeringens proposition 2008b/09:82, St€ od
till personer som vårdar eller st€odjer närstående, pp. 16 ff.; Johansson (2004), p. 21; Thunved
(2012), pp. 184 f. as well as the overview of the centre of excellence at its homepage (fn. 71).
3.2.2.2 Social Security Benefits
In addition to the municipal range of services social security benefits to family carers
are also important. These include the family carer’s allowance (Närståendepenning)
according to Chapter 47 SFB, the possibility of using subsidies for assistants
according to Chapter 51 SFB as shown above and care allowance pursuant to
Chapter 22 SFB or the temporary parental allowance pursuant to Chapter 13 SFB.
Pursuant to Chapter 47, § 3 SFB insured persons who provide long-term care to a
relative on grounds of serious illness and who therefore cannot perform gainful
employment are entitled to a family carer’s allowance. Other preconditions are that
the sick person is personally insured, that long-term care is provided in Sweden and
that he or she has agreed to being provided care by the relative in question. Family
carer’s allowance is only paid to one person at a time (§ 6) and is limited to a
maximum of 100 days (§ 8). In the case of HIV infection the period can be extended
to 240 days (§ 9). The amount corresponds to 80% of the carer’s earnings-based
sickness allowance and can also be granted in parts if the carer renounces gainful
employment in part only (§§ 14, 15).95
The subsidy for an assistant according to Chapter 51 SFB can be used by the
person in need to acquire the necessary assistants’ hours for activities of daily living
including the time for shopping or leisure activities as well as for help with
engaging in gainful employment. The person in need of care may act as an
employer and engage one or more assistants, found an association or a cooperative
together with other persons dependent on help in order to engage several assistants
as an employer, or to commission third parties such as private providers, for
example. At the same time it is also possible to draw on assistants’ hours from
the municipal services if this helps satisfy care requirements altogether in a
sufficient way. Also a relative may be employed as an assistant. In such case, the
employment relationship is usually established with the community or another
provider that offers assistants’ services.96
Care allowance according to Chapter 22 SFB or the temporary parental allow-
ance according to Chapter 13 SFB may ultimately also be regarded as a supporting
benefit to family carers, for both benefits enable parents to provide long-term care to
their children themselves. Care allowance according to Chapter 22 SFB is to be
used to meet the child’s current care requirements. This includes the direct provi-
sion of long-term care by the parents or the persons entitled to custody and
temporarily also by a third party on the one hand, and refundable extra expenses
arising from the child’s illness and disability on the other hand. Alternatively, the
temporary parental allowance pursuant to Chapter 13 SFB enables parents to
95
Cf. F€orsäkringskassan, Faktablad: Närståendepenning, dated: 14/06/2012, p. 1; available at:
96
Cf. F€orsäkringskassan, Faktablad: Assistansersättning, dated: 22/12/2012, p. 2; available at:
518 S. Weber
provide long-term care to the child for a certain period while partly or entirely
renouncing gainful employment.
3.2.3 Non-profit and Private Long-Term Care Providers
Although the provision of long-term care is largely considered to be a public task,

the individual can choose between non-profit or private service providers. The basis
for this is the Act on Free Choice Systems that has been in force since 2009 (Lag om
valfrihetssystem [LOV]97).
3.2.3.1 Freedom of Choice
According to § 1 (2) of the Act, a person in need of long-term care can freely choose
a provider from the social services and the health service as long as this provider has
been approved by the supervisory authority and has concluded a contract regarding
the execution of services to be used. Services for children and adolescents are,
however, excluded from the Free Choice Systems.98 The competent authority must
treat public and private providers in an equal and non-discriminatory manner (§ 2).
However, the communities are not obliged to introduce Free Choice Systems. Yet,
by offering subsidies the government has created incentives to promote their
introduction. As per October 2010, 153 communities had decided the introduction,
with the system having already been implemented by 68 of them at the time.99 In
2010, the provinces for their part introduced freedom of choice for the health and
care services (Primärvården) managed by them.100 According to § 5 HSL this
includes all medical services that do not imply in-patient treatment or the use of
technical equipment.
This mode of introducing freedom of choice is currently leading to a certain
non-transparency. At present it is possible for the health and care services of the
province to be subject to the system of freedom of choice, while this is not the case
for the part of the services lying in the responsibility of the communities. In
addition, the individual provinces have excluded specific sections of the health
and care services from freedom of choice in different ways, with some provinces
having introduced their own rules. Depending on the place where the service is
granted it must therefore be examined in each individual case whether or not there
is freedom of choice.101 This also applies to the other municipal services. In the area
of elderly care services, for example, 45 communities had introduced Free Choice
97
Lag (2008:962) om valfrihetssystem as amended by SFS 2009:856.
98
Cf. auch Regeringens proposition 2008a/09:29, Lag om valfrihetssystem, p. 137.
99
Socialstyrelsen (2010d), p. 9.
100
Socialstyrelsen (2010c), pp. 6 u. 13.
101
Cf. overview regarding the provinces in Socialstyrelsen (2010c), p. 16.
Systems as per March 2010. In five of the communities this only applied to services
like cleaning and shopping, while in 33 of the communities freedom of choice was
also granted for general and physical care services; furthermore, eleven of the
communities also allowed for free choice from the outpatient health and care
services—with only two communities granting freedom of choice of this kind
also to persons who live in special nursing facilities.102
Out of the 154,000 persons calling on outpatient care services according to SoL
in 2008, around 80,000 lived in a community that introduced Free Choice Systems
for “Hemtjänst” in 2010. About 40% of the latter chose a private service provider;
yet, the extent of private services rendered varied considerably between the indi-
vidual communities.103
3.2.3.2 Approval and Supervision
The “approval” of a non-profit or private provider is based on a “care contract”

(Vårdavtal) which in the area of health and care service provision is concluded
between the province and the relevant provider. It is based on the Swedish Act on
Public Procurement (Lag om offentlig upphandling [LOU])104 or the Act on Free
Choice Systems respectively. A contract governing long-term care can be con-
cluded with individuals or corporate bodies and has to be of a temporary nature.
However, there are no exact regulatory requirements as to the content of such a
contract. In practice, the contracting parties settle the object of service, the remu-
neration, the obligation to report and the supervisory procedures. Special rules may
apply for registered physicians and physiotherapists.105
According to Chapter 15 LOU, the conclusion of the contract has to be preceded
by a simplified tendering procedure. The procedure will be initiated by the compe-
tent authority by asking for the submission of a tender in an appropriate form, e.g. in
electronic databases (§ 4). The tender documents shall be easily accessible and the
description of the conditions regarding the provision of services, especially the
underlying legal bases, shall be sufficiently clear.106 Any provider interested in a
contract is entitled to present a service offer to the relevant authority and negotiate
it. Potential service providers may also submit an offer on their own initiative, and
the authorities, for their part, may ask for an offer from certain providers. The
contract shall be awarded to those providers who submit the most economically
advantageous offer or the lowest price offer (§ 16). Direct award of contracts is
102
Cf. Socialstyrelsen (2010e), p. 16.
103
Socialstyrelsen, Stimulansbidrag (2010d), p. 34; cf. on the introduction of the systems and its
consequences also Ekegren (2009).
104
Lag (2007:1091) om offentlig upphandling as amended by SFS 2012:392.
105
Cf. SOU (2009) 84, Regler f€ or etablering av vårdgivare, pp. 70 f.
106
For a critical comment on this practise of the communities see Socialstyrelsen (2010e),
pp. 32 ff.
520 S. Weber
permissible under certain conditions to a limited extent (§ 3). A review of the award
decision is possible (Chapter 16 LOU).107
Chap. 3 LOV also provides for public notice through the relevant authority,
namely via a specially set-up national Internet platform. Also in this respect, the
documents for tendering must be suitable for their purpose, as well as easily
understandable and accessible (Chapter 9, § 1). Any provider who makes a service
offer in accordance with the tender documents must be approved by the authority as
a service provider according to Chapter 8, § 1. That is what the provider is entitled
to. In contrast to the tender procedure according to LOU, there is a general
entitlement to becoming approved as a service provider. According to § 3 a contract
is to be concluded concerning the services, their remuneration and quality. If the
authority refuses to conclude a contract, the provider has the right to appeal
(Chapter 10, § 1).108
The rules for the provision of services stipulated by the Swedish National Board
for Health and Welfare (Socialstyrelse) on the national level are equally valid for
public, non-profit and private providers.
3.3 Special Forms of Management
The above-mentioned objectives of the assistance services and their provision on an

outpatient basis through municipal, and also non-profit or private providers are of
major significance to the “management” of those services. Along with the quasi
traditional administrative procedure regarding the submission of applications and
the granting of required services, it is also the “organisation” of self-determination
and self-responsibility of the person in need that must be taken into account.
Sweden has in this context become famous for the introduction of the so-called
Personal Budget. What contributed to this is the promotion of barrier-free housing
for the elderly and for persons with disabilities, as well as the shift away from a
service provision in (large) institutions, which had also become necessary due to
individual demands regarding specific assistance services. The emergence of
non-profit and private providers as an alternative to the municipal social services
further intensifies this effect.109
The prime example of this type of service that virtually calls for a personal
budget is the subsidy for an assistant according to Chapter 51 SFB. This monetary
benefit granted by social insurance to persons with disabilities who are in need of
assistance of more than 20 h per week—a surplus that is no longer covered by the
benefits in kind provided by the communities—makes it possible for persons
involved to individually and autonomously manage the provision and use of
107
SOU (2009) 84, Regler f€or etablering av vårdgivare, p. 75.
108
Cf. SOU 2009:84, Regler f€or etablering av vårdgivare, p. 76.
109
Cf. Meyer (2011), pp. 118 f.
assistance. The appropriation of the payment as such and the help stipulated when
planning the demand for assistance define the limits of the personal budget. Each
individual can freely choose to what extent he/she would like to draw on assistance
from a provider or whether he/she will employ an assistant him/herself.110
Disability allowance pursuant to Chapter 50 SFB and care allowance according
to Chapter 22 SFB may also be allocated to this special form of management of
assistance. No entitlement exists as to being granted a monetary benefit by the
communities; the communities are rather free to resort to benefits in kind to cover
needs. In the individual case there is, however, a possibility to grant monetary
benefits instead of benefits in kind, especially with a view to the general objective of
respect for the integrity and self-determination of each person in need. Hence, a
personal budget is also possible in the case of elderly care services.
In addition, the communities are free to grant certain assistance services by
issuing vouchers which the recipient may use to “pay” a service provider for the
service rendered. This form of management was chosen by the communities for the
provision of meals, for example, thus adding to a more cost-effective supply of food
in elderly care. The same is true for the use of public and other transport services.111
3.4 Financing
Financing of the benefits rendered by the social services is mainly provided by the
communities and is based on income tax revenues, which represent about two thirds
of a community’s total income. In addition, there is also the revenue from com-
pensatory state mechanisms that is to balance both the differences in revenue
between the individual communities and particular expenditure pressures, as well
as other funding programmes like one-time structural support measures. These state
payments represent 15–20% of the municipal budget. In the area of elderly care, the
recipients of assistance contribute to the financing of social services with 5%, a
percentage which is of comparatively minor importance; for disability allowance,
co-payments are even lower.112 Accordingly, financing of the health and care
services continues to be secured mainly by the provinces.
110
Meyer (2011), pp. 120 ff.
111
On transport services, cf. legal basis in Lag (1997:736) om färdtjänst as amended by SFS
2010:1068; for food provision schemes e.g. with the community see Falk€ oping at http://www.
falkoping.se/omsorghjalp/matsedlaraldreomsorgen [10/09/2012].
112
Cf. Karlsson et al. (2012), p. 254 (269 f.).
522 S. Weber
3.4.1 Municipal Income Tax
As a consequence of the local right to self-determination, Chapter 14, § 4 of the Basic

Law on the Governmental Structure grants the provinces (Landstingskommuner)
and the communities (Primärkommuner) the independent right to collect taxes and
other duties. “Municipal” taxes are therefore not subject to uniform assessment but
vary according to the communities.113 Thus, in 2012, taxes increased in 64 of the
290 communities while there was a tax reduction in six of them. In 26 of the
communities tax increase is due to a decision taken by the community and in 38 of
them it is due to a decision taken by the province to which the community belongs.
The national average municipal tax is 31.6%, with the maximum being 34.32%
(in Hofors in the province of Gävelborg) and the minimum 28.89% (in Vellinge in
the province of Skåne). The tax revenues are split between the province and the
community, with approximately two-thirds being allotted to the communities
(22.89% in Hofors, 18.50% in Vellinge).114
3.4.2 Structural Compensation and State Subsidies
Financial compensatory mechanisms are of particular importance for the communi-

ties and provinces with regard to the financing of their social services, with compen-
sation taking place between financially strong and financially weak communities and
provinces on both the revenue and the expenditure side. The comparative analysis
between the actual municipal tax revenue per citizen and the national average serves
as a basis for the calculation of the obligation to pay into or the right to receive funds
from the compensation system. If a community’s revenue is below the national
average it will receive compensation equal to the difference per inhabitant, with
the average tax rate of the province being taken into account, thus generating a lower
amount of compensation if appropriate. If a community‘s tax revenue is above the
national average, the community has to pay a compensation, with its actual tax rate
being taken into account for its benefit. In 2008 279 communities were entitled to
compensation whereas eleven communities had to pay into the system, with a
substantial share of the compensation being paid by the State.115
Specific expenditure due to structural disadvantages is also compensated for. This
especially applies to the expenses of the municipal social services, which may differ
widely according to the composition of the population in the respective community
or province. Compensation is calculated separately for each of the services. Standard
113
Holmberg et al. (2006), pp. 67 ff. (on the previous amendment of the regulation see Chapter 1,
§ 7); Bohlin (2011), pp. 169 ff.
114
Statistika Centralbyrån (2012), Kommunalskatterna, available at http://www.scb.se [21/08/
2012].
115
Cf. examples at Sveriges Kommuner och Landsting/Regeringskansliet, Kommunalekonomisk
utjämning, 2008, pp. 13 f., available at http://www.regeringen.se/sb/d/10244/a/108478 [23/07/
2012]; for the calculation of compensation payments see also Karlsson et al. (2012), p. 254 (270).
costs, for example for elderly care, are calculated via numerous individual compo-
nents. Communities with higher costs receive a certain compensation payment;
communities with lower costs are to pay a certain contribution. In general, the
calculation is based on assumptions that are annually reviewed. Specific compensa-
tion systems exist for benefits pursuant to LSS and for pharmaceuticals.116
In 2008, the communities and provinces had to pay a compensation of 5.7 billion
SEK based on their tax revenue, and of 6.6 billion SEK based on their expenditure.
Another 62.5 billion SEK were added from tax revenues of the State. To compen-
sate for the difference in revenues, an overall amount of 68.9 billion SEK was
passed on to the communities and provinces and payments of 6.6 billion SEK were
made to compensate for various expenditures. A structural support of another 2.7
billion SEK was provided by the State.117
In connection with the introduction of the Act on Free Choice Systems118 in the
area of the municipal social services and the health and care services, another
280 million SEK were provided in 2008 to support the introduction of the
system.119
3.4.3 Participation of Beneficiaries
The authorisation to make beneficiaries participate in the costs incurred is to be

found in Chapter 8, § 2 SoL. This applies to ambulatory services, for example, to
attending day care facilities and to special nursing homes for people in need. For
services referring to a “treatment” no financial participation may be asked
(Chapter 8, § 1 SoL). Hence, a difference has to be made between those medical
services and “care services” in their form as actual “services”. This is generally true
for services pursuant to § 2 as mentioned above although, in particular cases, a clear
distinction cannot always be made.120 Within the scope of the legal regulations the
communities may calculate the amount of the individual contributions themselves.
First of all, the calculation is made on the basis of the current price base amount
(Prisbasbeloppet),121 determining a minimum amount that has to remain with the
person receiving support to cover his/her living expenses regarding the household
(Minimibeloppet; formerly F€orbehållsbelopp), as well as a maximum contribution
to the costs (H€ ogkostnadsskyddet) serving as an upper limit to participation in the
expenses. The minimum amount comprises the costs for food, clothing, consumer
116
Cf. Sveriges Kommuner och Landsting/Regeringskansliet, Kommunalekonomisk utjämning,
2008, pp. 16 ff., available at http://www.regeringen.se/sb/d/10244/a/108478 [23/07/2012].
117
Cf. Sveriges Kommuner och Landsting/Regeringskansliet, Kommunalekonomisk utjämning,
2008, p. 8, available at http://www.regeringen.se/sb/d/10244/a/108478 [23/07/2012].
118
Lag (2008:962) om valfrihetssystem as amended by SFS 2009:856.
119
Socialstyrelsen (2010d), p. 9.
120
Critical appraisal thus also by Thunved (2012), p. 232.
121
Cf. on this illustration above, pp. 14 f.
524 S. Weber
goods, media, furniture, home contents insurance, travel, dental treatment, costs for
the health and care services and pharmaceuticals. The costs of housing, however,
are not taken account of.122 In 2012 the minimum amount for single persons was
one twelfth of 1.3546 times the price base amount per month (4967 SEK). For
recipients who live together with another person, the minimum amount is 4197
SEK (one twelfth of 1.1446 times the price base amount). On the basis of an
individual means test the minimum amount may be increased by 10% (497 SEK
per month) for young people with disabilities who incur special expenses for setting
up a family and housing.123 Moreover, the communities are obliged and entitled to
increase or reduce these generally calculated amounts in individual cases under
special circumstances.124
In 2012, the maximum amount for outpatient services in the home of the person
in need and in special nursing homes, offers in day care facilities including health
and care services provided there in accordance with § 26 (3) HSL was not to exceed
one twelfth of 0.48 times the price base amount per month (1760 SEK). The
monthly limit for housing costs in a special nursing home is one twelfth of 0.5
times the price base amount (1833 SEK).125
Special services according to LSS for persons with disabilities are generally free
of charge (§ 21 LSS). Persons in need of help may have to make co-payments to
housing costs, or to leisure and cultural activities if the beneficiary receives a full
old-age pension or the full amount of sickness benefits or activity compensation
pursuant to the provisions of SFB (§ 19 LSS). If services are rendered to persons
under 18 years of age outside the family home, the parents are obliged to participate
in the expenses (§ 20 LSS). Finally, persons receiving a subsidy for an assistant
according to Chapter 51 SFB (§ 18 LSS) may be asked to participate in the costs.
3.4.4 Expenses of the Communities and Provinces
In 2009, the communities spent an overall amount of 158 billion SEK for the benefits
and services provided by the municipal social services. Compared to 2008 this meant
an increase of 3 billion SEK with 131 billion SEK coming from tax revenues and
general State subsidies. A further 12 billion SEK were added by the State to refund
operating costs and costs for personal assistance. The beneficiaries’ participation in
the costs amounted to 9 billion SEK (5.7%). Private service providers received
33 billion SEK with 8 billion SEK coming from State subsidies and approximately
3 billion SEK stemming from the participations paid by the recipients.126
122
Thunved (2012), pp. 236 f.
123
Socialstyrelsen, Meddelandeblad No. 9/2011.
124
Regeringens proposition 2000b/01:149, Avgifter inom äldre- och handikappomsorg, pp. 40 f.
125
Socialstyrelsen, Meddelandeblad No. 9/2011.
126
Statistika Centralbyrån, Finansiärer och utf€
orare inom vård, skola och omsorg 2009, 2011, p. 6,
available at http://www.scb.se [21/08/2012].
In 2009, the provinces had to pay a total amount of 223 billion SEK for the health
and care services, i.e. 7 billion SEK more than the year before. 206 billion SEK of
this amount came from the provinces’ budgets, while additional State subsidies
amounted to approximately 8 billion SEK. Participations paid by patients totalled
around 6 billion SEK. Services rendered by private providers amounted to approx-
imately 47 billion SEK with 50% being paid by the provinces and 18 billion SEK by
other payers and the patients themselves. It has to be noted, however, that the
amount also includes private dental treatment.127
3.5 Quality Assurance
The individual services described above are subject to the quality requirements of
the laws on the basis of which they are provided. Legal certainty and high standards
in the delivery of the services are ensured via comprehensive documentation
requirements. The correct implementation of services is, first and foremost, in the
responsibility of the communities and provinces, who are also in charge of their
delivery. On the national level, supervision is carried out by the Swedish National
Board for Health and Welfare (Socialstyrelse).
3.5.1 Quality Requirements
Legal quality requirements are limited to the general provisions concerning the
delivery of benefits and services. In practice these principles find expression in the
regulations and instructions of the National Board.
3.5.1.1 Legal Provisions
The basic provisions for any activity on the part of the authorities are set out in the
Administrative Procedure Act (FL) and also apply to the activities of the social
services of the communities and provinces.128 They are supplemented by the
legislation governing the respective services.
As for the municipal social services, Chapter 3, § 3 SoL simply says that the
services should be of “good quality”. The staff providing the services must there-
fore be appropriately trained and experienced. The quality of the services is to be
continuously and systematically developed and assured.
127
Statistika Centralbyrån, Finansiärer och utf€
orare inom vård, skola och omsorg 2009, 2011, p. 5,
available at http://www.scb.se [21/08/2012].
128
Socialstyrelsen (2010b), pp. 40 f.
526 S. Weber
The same wording can be found in § 6 LSS, comprising, in addition, the

obligation to cooperate with other facilities and authorities. Furthermore, service
provision is based on the respect for the integrity and self-determination of the
individual and his/her right of co-determination with regard to the service delivery.
A (quality) objective for the health and care services formulated in § 2 HSL is
“good health” and “nursing care to be provided to the whole population under the
same conditions”. When rendering the services, the dignity of the individual and the
“equal value” of all human beings have to be respected. At this point, the law
formulates a rule of precedence, saying that the person who is most in need of health
and care services is to be given precedence. In §§ 2a-2h HSL these general rules are
specified in the form of provisions on how to actually deal with patients and pass on
information, focusing on staff training, equipment of the facilities and cooperation
with authorities. § 31 HSL finally also stipulates the continued and systematic
development and assurance of the quality of services provision.
3.5.1.2 Concretisation Via Regulations and Instructions
The Swedish National Board for Health and Welfare has given further concrete
shape to these legal provisions via individual specifications and instructions
(allmänna råd). This refers to the quality requirements129 the obligation to provide
documentation,130 the rules applying in the case of errors and shortcomings in long-
term care131 as well as the coordination of benefits provided by various services.132
In the area of health and care services this also applies to numerous further pro-
visions governing, for example, hygiene, patient safety and the administration of
medication.133 These provisions form the basis for the Swedish National Board’s
monitoring role as to both social services and health and care services.134
The provisions regarding quality standards apply both to service provision
according to SoL and to LSS, as laid down in § 1 of the former. Hence, the
communities and provinces are obliged to establish a quality assurance system
governing the respective objectives, the distribution of tasks and responsibilities,
the control mechanisms, staff development and the cooperation with other service
providers (§ 3). The following quality indicators are formulated by the Swedish
National Board: respect for the self-determination and integrity of the beneficiary;
129
Socialstyrelsen, Ledningssystem f€or kvalitet i verksamhet enligt SoL, LVU, LVM och LSS,
SOSFS 2006:11.
130
Socialstyrelsen, Dokumentation vid handläggning av ärenden och genomf€ orande av insatser
enligt SoL, LVU, LVM och LSS, SOSFS 2006:5.
131
Socialstyrelsen, Tillämpningen av 14 kap. 2 § SoL (Lex Sarah), SOSFS 2008:10.
132
Socialstyrelsen, Om samordning av insatser f€or habilitering och rehabilitering, SOSFS 2007:10.
133
SOSFS 1997:8; 1997:10; 2000:1; 2004:11; 2004:12; 2005:10; 2005:12; 2005:23; 2005:26;
2005:27; 2005:28; 2005:29; 2007:19; 2008:1; 2008:14; 2008:21; 2009:6.
134
Cf. Socialstyrelsen, Tillsynrapport 2012; Nationell tillsyn av vård och omsorg om äldre,
Delrapport 2011 sowie Delrapport 2012.
an orderly, holistic and continued service provision that is effectively rendered in

accordance with the acknowledged rules of the respective profession; accessibility
of the services; security and predictability of the services and of the decisions taken
by the authorities.135
Quality development shall take place continuously with the so-called planning
spiral acting as a model that is based on four steps of development (objectives and
planning; provision; assessment; improvement and new objectives).136 The identi-
fication of actual errors during the provision of the individual services is of special
significance in this context. In addition, court decisions also serve as a corrective
factor as the courts are able to fully review the assessment made by the authorities
in each individual case.
3.5.2 Documentation Requirements
The legal foundations for the documentation requirements are contained in Chapter
11 SoL and §§ 21a-d LSS. The so-called implementation plan (Genomf€orandeplan)
pursuant to Chapter 6 SOSFS 2006:5 can be regarded as the core instrument for
documentation. This plan has to contain both the contents of the relevant notice of
granting regarding the provision of support (Biståndsbeslut) as well as its justification
and the concrete implementation planning.137
Pursuant to Chapter 5, §§ 1, 2 of the administrative regulations, the further
planning and provision of services is to be documented on a continued basis in a
so-called personnel file or journal (see Chapter 6, § 2). This provides a basis for both
guaranteeing the actual provision of services granted and for assuring their good
quality. The precondition is that the essential circumstances of the service provision
are documented as promptly and as correctly as possible. Orderly documentation
therefore plays a key role in the responsibility of persons in charge of the case and
of the direct service provider.138
The documentation of the decision-making process and of the service provision
itself in the personnel file finally serves as a basis for control also in the sense of
quality assurance through the administration and the national supervisory agencies.
Pursuant to Chapter 7, § 4 the person concerned is entitled to access his/her
personnel file. The documentation may ultimately play a significant role in the
case of court proceedings.139 The documentation is, however, also used for statis-
tical and research purposes.
135
Socialstyrelsen (2010a), p. 19.
136
Socialstyrelsen ibid., p. 20.
137
Cf. auch Länsstyrelsen in Skåne Län, Vem bestämmer?, 2009, pp. 7 ff.
138
Clevesk€old et al. (2009), pp. 182 ff.
139
Clevesk€old et al. (2009), p. 182.
528 S. Weber
By way of the Patient Data Act,140 separate documentation provisions were

adopted regarding the health and care services. Chapter 3 of the Act contains the
provisions regarding the so-called patient journal and its contents. Furthermore, the
Act contains a number of provisions concerning patient data security (Chapter 4), as
well as the foundations for a national and a so-called regional quality register
(Chapter 7), which shall also serve statistical and research purposes.
3.5.3 National Supervision
Quality assurance is also achieved through the supervision by the Swedish National
Board for Health and Welfare exercised over the social services (see Chapter 13
SoL). In 2010, the provincial authorities (Länsstyrelse) transferred this task entirely
to the National Board so that it is now assumed by six regional authorities alike who
are in charge of the health and care services, the municipal social services and the
social services pursuant to LSS.141
Supervision comprises service provision as such as well as the delegation of
tasks by a community to non-profit or private providers (§ 1); moreover, it
embraces the imposition of administrative regulations, the control of infringements
and errors, the organisation of vocational training and the passing on of general
information to the public (§ 3). Numerous powers are granted along with this task,
such as the right to access and inspect documentation (§§ 5, 6) or the right to
completely or partly close facilities in the event of grave mistakes or major
irregularities (§ 9).142
This nationally organised form of supervision and the national administrative
provisions used have, to a certain degree, entailed a consistent development of the
social services that are under the responsibility of the communities, a development
which is in conflict with the right of the communities to create local structures and
find local solutions. Yet, with a view to the life, personal security and health of each
individual, but also with comparable standards in mind, the legislator has opted for
such a standardisation.143
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Social Security and Long-Term Care
Dependency in Switzerland
Iren Bischofberger and Hardy Landolt
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 532
2 Foundations of the Swiss Long-Term Care Insurance System . . . . . . . . . . . . . . . . . . . . . . . . . . . . 534
2.1 Constitutional Foundations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 534
2.2 Dual Financing System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 535
3 Subsidies Granted to Long-Term Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 535
3.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 535
3.2 Facilities for Persons with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 536
3.3 Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 537
4 Care Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 538
4.1 Historical Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 538
4.2 Helplessness Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 539
4.2.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 539
4.2.2 Helplessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 540
4.3 Degrees of Helplessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 544
4.3.1 Long-Term Care Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 545
4.4 Assistance Allowance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 553
4.4.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 553
4.4.2 Eligibility Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 554
4.4.3 Acknowledged Forms of Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 554
4.4.4 Acknowleged Assistance Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 554
5 Medical Aids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 556
5.1 Provision of Medical Aids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 556
5.2 Allowances for Third Party Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 557
For more details, in particular on jurisprudence see: Bischberger/Landolt, Absicherung der

Pflegebedürftigkeit in der Schweiz, Zeitschrift für ausländisches und internationals Sozialrecht
(ZIAS) 2013, 105–168 (in German language).
I. Bischofberger (*)
Kalaidos University of Applied Sciences, Zurich, Switzerland
e-mail: iren.bischofberger@kalaidos-fh.ch
H. Landolt
Centre of Competence for Law on Long-Term Care, Glarus, Switzerland
e-mail: mail@lare.ch

https://doi.org/10.1007/978-3-319-70081-6_14
532 I. Bischofberger and H. Landolt
6 Additional Allowances . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 558

6.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 558
6.2 Annual Supplementary Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 558
6.2.1 Expenditures Eligible for Coverage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 558
6.3 Reimbursement of Costs Incurred Due to Illness and Disability . . . . . . . . . . . . . . . . . . . . 561
6.3.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 561
6.3.2 Recognised Costs Incurred Due to Illness and Disability . . . . . . . . . . . . . . . . . . . 561
6.3.3 Maximum Amounts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 562
7 Care Credits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 564
7.1 General . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 564
7.2 Eligibility Requirements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 564
7.2.1 Recognised Family Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 564
7.2.2 (Moderately) Severe Helplessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 564
7.2.3 Being within Easy Reach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 565
8 Further Securities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 565
8.1 Tax Deductions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 565
8.2 Cantonal Support of Family Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 565
8.3 Social Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 566
9 Critical Appraisal and Potential Future Remedies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 566
9.1 Critical Appraisal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 566
9.2 Developing New Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 567
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 575
1 Introduction
Since the founding of the Swiss Federal State in 1848, a very complex coexistence
of laws has been developed with refined legal foundations, procedures and allow-
ances, providing social protection against the risks of old age, illness and accident.
As a result, there is an increased need for coordination between legislations and the
consistent use of terms and concepts.
Societal changes (such as heterogeneous familial structures, professional and
social mobility or new employment patterns), the rise in chronic diseases, increas-
ing life expectancy with considerably longer disability-free years including, how-
ever, also increasing frailty and, consequently, the need for help in old age,1 as well
as longevity with adverse health effects due to pharmaceutical, technical and
surgical progress require support, including professional guidance and advice,
and the coordination of services particularly in private households.
Swiss social security legislation makes a difference between need of support
(of a person who requires assistance with regard to the activities of daily living such
as personal hygiene or household maintenance), need for attendance (in case of a
health condition which requires professional nursing care, particularly regarding
1
Cf. Lieberherr et al. (2010).
Social Security and Long-Term Care Dependency in Switzerland 533
guidance and advice with respect to the provision of nursing care2) and long-term
care dependency as part of the entire system of dependence on support.3
In Switzerland, the number of persons requiring long-term care is estimated at
115,000–135,000.4 By 2030 this number will have risen to 170,000 or 230,000,
depending on the scenario.5 Especially the need for help with household chores and
the activities of daily living is growing exponentially in old age.6
In 2004 family caregivers provided about 34 million hours of support and long-
term care to adults in private households. This does not include informal assistance
from private persons to other households: 12% of women and 11% of men engage
in this kind of assistance with about 100 million hours per year, unpaid.7
The relatively rare special risk of “long-term care dependency” involves high
costs for the cantons, communities and the individual, including the opportunity
costs incurred by family members.8 According to the Swiss care provision princi-
ples, support and long-term care in the case of long-lasting functional restrictions
are mainly provided by the private household of the person concerned and his/her
relatives.9
It is not guaranteed that the staff offering the services for the care providers are
qualified professionals. In 2009 only two thirds of the required professional care
staff were trained so that there was a lack of 2400 qualified carers,10 and, according
to forecasts, approximately 25,000 additional qualified carers will be needed by
2020.11
Need of support, need for attendance and long-term care dependency and their
costs and financing will therefore become central social tasks in the future.12
2
See Art. 7 Para. 2 lit. a KLV.
3
Cf. Wingenfeld et al. (2011) and Landolt (2001b, 2002a, b, 2003, 2009).
4
Cf. H€opflinger and Hugentobler (2005), p. 48.
5
Cf. H€opflinger et al. (2011), p. 10.
6
Cf. Lieberherr et al. (2010), p. 23 ff.
7
Cf. Sch€on-Bühlmann (2005). These numbers are based on the Swiss Labour Force Survey
[Schweizerische Arbeitskr€ afteerhebung, SAKE] or, where applicable, taken from the “Unpaid
Work” module. This report distinguishes between long-term care and assistance on the one
hand, and informal care provision and services provision on the other.
8
Cf. Perrig-Chiello and H€ opflinger (2012), Bischofberger (2011).
9
Cf. H€opflinger et al. (2011).
10
Cf. Swiss Conference of the Cantonal Healthcare Directors [Schweizerische Konferenz der
kantonalen Gesundheitsdirektoren, GDK] (2009).
11
Cf. Swiss Observatory on Healthcare [Schweizerisches Gesundheitsobservatorium,
Obsan] (2009).
12
See on this also the 2020 health policy priorities (Prioritäten Gesundheit 2020) of the Swiss
Federal Council (http://www.bag.admin.ch/gesundheit2020/ – last viewed on 23/07/2013).
2 Foundations of the Swiss Long-Term Care Insurance

System
2.1 Constitutional Foundations
In Art. 41 (1) (b), the Federal Constitution (BV) obliges the federal authorities and
the cantons to ensure, in addition to the individual’s personal responsibility and
private initiative, that every person is provided the necessary care required for
his/her health.13 This refers neither to a competence provision14 nor to a funda-
mental social right, but is merely a social objective.15 Also from Art. 12 BV (right
to seeking help in situations of need) no right arises regarding domiciliary care.16
Federal mandates regarding social security matters17 exist with respect to the
social risks of old age and disability,18 as well as illness and accident.19 On the basis
of Art. 3 BV, of a specific constitutional provision20 or a responsibility delegated by
the federal government,21 the cantons may also adopt new social security standards.
The social security competence provisions do not refer to long-term care depen-
dency as a separate issue. The term has, however, many features in common with
other constitutionally recognised facts related to dependency.22 As long-term care
dependency is always a consequence of old age, illness or accident, the federal
government primarily has to determine whether and in what way the costs for long-
term care are to be covered by social security. In contrast, the cantons and
communities are first of all held responsible for the provision of sufficient long-
term care.
13
Cf. Art. 41 Para. 1 lit. b BV.
14
Cf. Art. 41 Para. 3 BV.
15
Cf. Art. 41 Para. 4 BV.
16
Cf. judgment BGer of 17.06.2005 (2P.73/2005) E. 5.
17
See e.g. Art. 59 Para. 5 BV and Art. 112 ff. BV.
18
Cf. Art. 112 f. BV.
19
Cf. Art. 117 BV.
20
Cf. Art. 114 Para. 4 BV and Art. 115 BV.
21
Cf. e.g. Art. 111 Para. 3 BV.
22
E.g. old age (Art. 8 Para. 2, 41 Para. 2 and 111 BV), disability or, respectively, disabled persons
(Art. 8 Para. 2 and 108 Para. 4 BV), very old persons (Art. 108 Para. 4 and 112 Para. 4 BV),
persons in need (Art. 108 Para. 4 and 115 BV), invalidity or, respectively, invalids (Art. 41 Para.
2, 111 and 112 Para. 6 BV), illness or, respectively, mental illness (Art. 41 Para. 2, 117, 118 Para.
2 lit. b, 119 Para. 2 lit. c and Art. 136 Para. 1 BV), accident (Art. 41 Para. 2, and 117 BV) as well as
the need for subsistence support (Art. 112 Para. 2 lit. b BV and 10th transitory provision
€
[Ubergangsbestimmung] BV).
2.2 Dual Financing System
In the overcomplicated dual financing system relating to the costs of attendance and
longterm care, the federal government and the cantons grant various allowances for
care services to persons dependent on long-term care in terms of subject financing
[Subjektfinanzierung], in particular helplessness allowances (including a supple-
ment for intensive care and compensation for support in life skills), long-term care
allowance, care support devices and reimbursement for services provided by third
parties, as well as care vouchers.
In addition, the federal government and the cantons provide object financing
[Objektfinanzierung] to facilities for people with disabilities, long-term care facil-
ities23 and aid groups.24 Depending on whether the subsidies are associated with the
individual level of attendance required by a person in need of long-term care or not,
we speak of subject-oriented object financing (sometimes also called indirect or
pseudo-subject-related financing [indirekte oder unechte Subjektfinanzierung], or
of pure object financing [reine Objektfinanzierung]. In cases in which the nursing
home25 or long-term care expenses26 are not covered by social insurance, the
cantons may choose between object financing and (pseudo-)subject-related
financing.
3 Subsidies Granted to Long-Term Care Facilities
3.1 General
aler]27 pursuant to
State subsidies for both inpatient care facilities (hospitals [Spit€
28
Art. 39 (1) KVG, nursing homes [Pflegeheime] pursuant to Art. 39 (3) KVG and
other homes, particularly facilities for persons with disabilities29,30) and outpatient
23
Cf. Art. 25a KVG and infra margin No. 21 ff; Landolt (2010a).
24
Cf. Art. 74 IVG and Art. 17 Para. 1 ELG.
25
Cf. Art. 13 Para. 2 ELG.
26
Cf. Art. 25a Para. 5 KVG.
27
Art. 39 Para. 1 KVG.
28
29
According to Art. 3 IFEG, the following are considered as institutions supporting the inclusion of
persons with disability:
– facilities which employ on-site or at decentrally located workplaces invalids who could, under
normal circumstances, not exercise any gainful activity,
– residential homes and other assisted forms of collective living for persons with disability,
– daycare centres where persons with disabilities spend their time in a community and can
participate in leisure and gainful activity programmes.
30
Art. 25a ELV does not distinguish between the terms ‘long-term care home’ and ‘facility for
persons with disabilities’. A care home is considered to be any facility which is recognised by a
care services (Spitex organisations31 or freelance professional nursing staff32) are

regulated in various cantonal decrees.33
3.2 Facilities for Persons with Disabilities
The IFEG and subsidiary cantonal law have obliged the cantons since 1 January
2011 to implement a subsidy and supply system for the nursing homes and the
facilities for persons with disabilities located in their own territory.34
Art. 7 IFEG35 requires cost sharing by the canton of residence of a disabled
person who is accommodated in a recognised care institution either within or
outside of the canton of domicile.36 Co-payments must cover the costs in a way
so that “no disabled person will become dependent on social assistance because of
such accommodation”.37
The IFEG does not stipulate insurance payments or subsidies to be granted by
the cantons; there must be a legal entitlement to subsidies, however, if cantonal law
provides for co-payments to be made in terms of subsidies to recognised institutions
canton as a home or which has obtained cantonal approval for operation. If—in connection with
the granting of helplessness allowance—the IV authority grades an insured person as a care home
resident within the meaning of Art. 42ter Para 2 IVG, this grading is also valid for claims to
supplementary services as are deliverable to care home residents.
31
Cf. Art. 51 KVV.
32
Cf. Art. 49 KVV.
33
E.g. in the canton of Zurich: Long-Term Care Act [Pflegegesetz] of 27/09/2010 (855.1) and the
Regulation on Long-Term Care Provision [Verordnung u€ber die Pflegeversorgung] of 22/11/2010
(855.11), as well as the Act regarding Facilities for Adult Invalids [Gesetz u€ber
Invalideneinrichtungen f€ ur erwachsene Personen (IEG)] of 01/10/2007 (855.2) and the Regulation
on Facilities for Adult Invalids [Verordnung u€ber Invalideneinrichtungen f€ ur erwachsene
Personen (IEV)] of 12/12/2007 (855.21).
34
Cf. Art. 10 Federal Act of 6 October regarding Institutions Supporting the Inclusion of Invalids
[Bundesgesetz vom 6. Oktober 2006 u€ber die Institutionen zur F€ orderung der Eingliederung von
invaliden Personen (IFEG)].
35
Art. 7 I.E. reads (translated):
1. The cantons bear part of the expenses incurred for a stay in an approved facility to the extent
that no invalid needs to claim social assistance due to such a stay.
2. If an invalid cannot find placement in a facility approved by the canton of residence that
adequately meets the needs of the invalid, the latter is—in line with Para. 1—entitled to claim
contributions from the canton to costs incurred for placement in a different institution which
meets the conditions according to Art. 5 Para. 1.
36
The Intercantonal Agreement on Social Institutions [Interkantonale Vereinbarung f€ ur soziale
Einrichtungen (IVSE)] of 13 December 2002 http://www.sodk.ch/ueber-die-sodk/ivse.html has the
purpose of facilitating without impediments the intercantonal placement of persons with special
requirements regarding assistance and support in appropriate institutions outside their canton of
residence.
37
Cf. Art. 7 Para. 1 IFEG.
or disabled persons.38 To guarantee that the persons concerned are accommodated

in appropriate institutions, federal legislation obliges the cantons to establish a
requirement and disability concept, and it obliges the canton of domicile to make
co-payments within and outside the canton.39
If persons in need of long-term care are accommodated in an institution for
disabled persons outside their canton of residence, there is an obligation on their
part, according to Art. 28 (2) IVSE and the provisions of the canton of residence, to
participate in the costs: partially or entirely, by using their income and part of their
assets.40
3.3 Nursing Homes
According to Art. 39 (3) KVG, “nursing homes” are considered to be homes and
facilities and their departments serving long-term and medical care41 as well as the
rehabilitation of long-term patients.42 Homes which primarily focus on
non-medical care, such as homes for the elderly that have no long-term care unit
or residential homes for needy persons are excluded, as are hospices serving
medical and palliative care of the seriously ill and dying persons who are covered
by social insurance.43
Nursing homes must be recognised under health insurance law (Art.
39 (1) KVG), dispose of sufficient medical care capacities,44 the necessary qualified
personnel45 and adequate medical facilities.46 They must comply with the cantonal
and intercantonal assessment of needs, have received a service mandate or be cited
on the cantonal nursing homes list.47
According to the Swiss Sickness Insurance Act/Swiss Health Care Benefits
Ordinance (KVG/KLV) and subsidiary cantonal law, the pension costs are borne
by the person in need of care and the local canton. As to the long-term care costs,
the health insurance funds solely contribute to the nursing and Spitex care costs,48
38
Cf. Art. 8 IFEG.
39
Cf. Art. 2 and 7 IFEG.
40
Cf. Art. 28 Para. 3 IVSE.
41
Nursing and medical care not only include care treatment but also the general and socio-
psychiatric basic nursing care (cf. Art. 7 Para. 2 KLV).
42
Cf. Art. 39 Para. 3 KVG.
43
Cf. judgment EVG of 19/12/2001 (K 77/00) E. 3b.
44
Cf. RSKV (1979), p. 277.
45
Cf. 107 V 54 E. 2a and RSKV (1979), p. 277.
46
See on this BGE 115 V 38 E. 9b/aa and 107 V 54 E. 1 and 2.
47
Cf. Art. 39 Para. 3 KVG.
48
Cf. Art. 25a Para. 1 KVG. The care home tariff, valid as of 1 January 2011, provides for 12 needs
levels or, respectively, a monthly allowance of CHF 270.– (tariff level 1: daily long-term care
needs of up to 20 min) through to CHF 3240.– (tariff level 12: daily long-term care needs of more
than 220 min) (cf. Art. 7a Para. 3 KLV).
while the person in need of care pays up to 20% of the maximum long-term care
contribution and the remaining amount of the costs is borne by the canton.49 It is up
to the cantons to decide whether the maximum co-payment is required from the
person in need of care. In the light of the principle that “outpatient care has
precedence over inpatient care”, some cantons, such as Zurich, take over half of a
patient’s co-payment in the case of long-term care being rendered in the private
household.50
The costs of hospital care, as well as of intensive and transitional care if
necessary after a hospital stay and if medically ordered by the hospital, will,
however, be reimbursed by mandatory health insurance and by the canton of
residence of the insured person for a maximum period of 2 weeks according to
the rules governing hospital financing.51 Care costs are co-financed on a 55:45
basis, with 55% borne by the canton of residence and 45% by the insurance
company.52
4 Care Benefits
4.1 Historical Development
The governmental duty of care for helpless persons [“H€ ulflose”] was first
recognised under the “Pension Law” of 7 August 1852. The Federal Act on Health
and Accident Insurance with the inclusion of military insurance of 5 October
189953 stipulated that sickness benefits were to be increased by 100% in the case
of complete helplessness.54 Later the “supplementary pension for helpless people”
was transferred into the Federal Health and Accident Insurance Act of 13 June
1911,55 Art. 77 of which stipulated that pensions be increased from 70 to 100% of
the annual insured income if the insured person was „helpless in such a way that he
or she is in need of special maintenance and care“. Art. 26 of the Federal Military
Insurance Act of 23 December 191456 provided for a similar regulation with regard
to sickness benefits. Art. 42 of the Federal Military Insurance Act of 20 September
194957 provided for an increase in daily sickness allowances and invalidity
49
50
Cf. e.g. § 9 Para. 2 Long-Term Care Act [Pflegegesetz] of 27/09/2010 (Canton of Zurich).
51
52
53
See BBl 1899 IV 61.
54
Similarly, Art. 24 Para. 9 and Art. 29 Para. 2 Federal Act regarding the Insurance of Military
Persons against Illness and Accidents [Bundesgesetz betreffend Versicherung der Milit€arpersonen
gegen Krankheit und Unfall] of 28 June 1901 ¼ BBl 1901 III 65.
55
Cf. BBl 1911 III 523.
56
See BBl 1915 I 45.
57
Cf. BBl 1949 II 509.
pensions and stipulated, in addition, an “appropriate allowance” if “helplessness

requires extraordinary expenditures”.
With the entering into force of the IVG, Swiss Parliament decided to create a
legal entitlement to helplessness allowances: “Helpless persons are those who,
because of their disability, permanently require help from a third person or personal
surveillance to carry out activities of daily living.”58 In 1968 an entitlement to
helplessness allowance was also introduced in the AHV.59 The restrictive criterion
for severe helplessness were eased in the years following 1968. However, it is only
since the entering into force of the new care-financing arrangement on 1 January
2011 that also moderate helplessness is considered with a view to an entitlement to
helplessness allowance, however only for those old-age pensioners who are not
accommodated in nursing homes.60 In accident insurance, the terms on helplessness
allowance were only laid down in 1981.
4.2 Helplessness Allowance

4.2.1 General
The helplessness allowance granted by AHV/IV is exclusively financed by the

federal government61 and is only granted to insured persons62 who have their
residence63 and habitual abode64 in Switzerland. Contrary to the premium-financed
helplessness allowance granted by accident insurance, this allowance is a special
non-contributory benefit that is not subject to the principle of the exportation of
benefits.65
Helplessness allowance is granted, at the earliest, from the day of birth.66
Insured persons who have not yet completed the first year of age are entitled to
helplessness benefits as soon as it has been ascertained that they are likely to suffer
from helplessness for more that 12 months.67
58
Art. 42 Para. 2 aIVG (1967).
59
Amendment to the Federal Act regarding Pension and Survivors’ Insurance [Änderung des
Bundesgesetzes u€ber die Alters- und Hinterlassenenversicherung] of 4 October 1968.
60
Cf. Art. 43bis Para. 2 AHVG.
61
Cf. Art. 77 Para. 2 IVG.
62
Cf. Art. 43bis Para. 1 AHVG and Art. 42 Para. 1 IVG.
63
Cf. Art. 13 Para. 1 ATSG.
64
65
Cf. on this BGE 132 V 423.
66
67
Cf. Art. 42bis Para. 3 IVG.
4.2.2 Helplessness
4.2.2.1 General
Helpless persons are those who—due to impaired health—permanently require

assistance from third persons or personal surveillance to carry out activities of
daily living.68
4.2.2.2 Assistance with Carrying Out Activities of Daily Living
The activities of daily living cover six areas69:

– dressing/undressing
– getting up, sitting/lying down
– eating
– personal hygiene
– using the toilet
– mobility.
The requirements are fulfilled if a person in need of help regularly depends to a
considerable degree on assistance through another person with respect to one of the
above activities.70 In the legal practice, a distinction is made between direct and
indirect71 third party help.
4.2.2.3 Need for Surveillance
Severe helplessness72,73 means that the insured person regularly depends to a

considerable degree on the help of a third party with respect to all activities of
daily living and, furthermore, that he or she is permanently in need of long-term
care or personal surveillance.74 Moderate helplessness, in contrast, requires perma-
nent personal surveillance or particularly intensive long-term care.75
68
Cf. Art. 9 ATSG and e.g. Art. 37 IVV and Art. 38 UVV.
69
With further references BGE 121 V 88 E. 3a.
70
Cf. BGE 117 V 146 E. 2. The need for assistance is regarded as considerable, for instance, if the
insured person cannot cut his/her meals into small pieces or if he/she cannot hold the eating
utensils him/herself, cf. BGE 106 V 158 E. 2b; Landolt (1995).
71
Cf. e.g. BGE 133 V 472 E. 5.1, 121 V 88 E. 3c as well as 107 V 145 E. 1c and 136 E. 1b; Landolt
(2004).
72
Cf. Art. 37 Para. 1 IVV and Art. 38 Para. 2 UVV.
73
Cf. Art. 37 Para. 3 lit. b IVV and Art. 38 Para. 4 lit. b UVV.
74
Cf. Art. 37 Para. 1 IVV.
75
A permanent personal need for surveillance corresponds to a need for support

with respect to two of the six activities of daily living and is deemed to be moderate
helplessness.76 Moderately severe helplessness is assumed if there is a need for
support with respect to two of the four above-mentioned activities of daily living,
and, in addition, permanent personal surveillance.77
A permanent personal need for surveillance78 involves a need for qualified
surveillance79 and goes beyond the mere need for minor surveillance.80 Permanent
personal surveillance is hence a kind of medical or nursing care service which is
needed due to the insured person’s physical, mental or psychological state of
health.81 This service is required if a third person must be present to help the
dependent person get up during the night.
As a rule, permanent need for long-term care is a criterion met by tetraplegics,82
who will require help with taking medicines83 and the daily opening of drug
packages.84
4.2.2.4 Long-Term Care Dependency
4.2.2.4.1 Permanent or Particularly Intensive Long-Term Care

Severe helplessness only applies if an insured person regularly depends to a
considerable degree on the help of a third party with respect to all activities of
daily living and is permanently in need of long-term care or personal surveillance.85
Moderate helplessness, in contrast, requires permanent personal surveillance or
particularly intensive long-term care.86
“Permanent surveillance” means that a certain medical or nursing care service is
required due to the insured person’s physical, mental or psychological state of
76
Cf. Art. 37 Para. 3 IVV and Para. 38 Para. 4 UVV.
77
Cf. Art. 38 Para. 3 UVV.
78
Art. 37 Para. 2 lit. b IVV bzw. Art. 38 Para. 3 lit. b UVV.
79
Cf. BGE 107 V 145 E. 1d.
80
Art. 37 Para. 1 IVV and Art. 38 Para. 2 UVV.
81
Cf. judgment BGer of 05/03/2009 (8C_912/2008) E. 3.2.3 and furthermore BGE 107 V
136 E. 1b and ZAK 1990, 44 E. 2c. The need for permanent care services does not mean that
the cargiver is tied exclusively to the person dependent on help, and it neither means 24-hour-care,
but is rather to be understood in terms of care services that are not of a temporary nature.
82
Cf. judgment BGer of 19/06/2007 (U 595/06) E. 3.2.2.
83
Cf. judgment EVG of 03/09/2003 (I 214/03) E. 4., also qualifies in terms of the need for
supervision, cf. judgment BGer of 23/09/2003 (I 360/03) E. 4.1.
84
Cf. judgment EVG of 03/09/2003 (I 214/03) E. 4, not, however, in the case of a roughly
15-minute long supervision of the taking of daily medication, cf. judgment EVG of 21/11/2006
(H 4/06) E. 4.2.
85
86
health. The term “nursing care” implies, for example, that there is a need to
administer medication or apply bandages on a daily basis. “Permanent” in this
context does not mean “around the clock” but stands in opposition to
“temporary”.87
Long-term care is “particularly intensive” if it is very time-consuming, causes
high expenses or has to be provided under aggravated circumstances, e.g. in cases
where it proves to be especially strenuous or has to be delivered at an unusual
time.88 A daily need for care of 2–2.5 h must certainly be classified as especially
intensive when aggravating qualitative factors come into play.89
4.2.2.4.2 Intensive Long-Term Care Dependency

Invalidity insurance grants insured persons under age 18 a supplement for intensive
long-term care.90 The text of the law acknowledges “intensive long-term care” as a
service covered by this insurance.91 Also the “increased demand for treatment and
basic care compared to that required by non-disabled minors of the same age” is
allowable,92 but not the amount of time required for medically prescribed treatment
or pedagogical therapeutic care.93
Intensive care refers to an allowable increase in long-term care of a daily average
of at least 4 h. Additionally required permanent surveillance is allowable in terms of
2 h of care, and particularly intensive surveillance due to a disability in terms of
4 h.94
The monthly supplement for intensive long-term care due to disability amounts
to the following percentage of the maximum pension level95:
– 60% (CHF 46.80) in the event of at least 8 h of attendance a day
des H€
ochstbetrages der Altersrente.
87
Cf. BGE 116 V 48 E. 6b.
88
Cf. margin No. 8057 KSIH.
89
Cf. judgments BGer of 31.05.2005 (I 565/04) E. 4.2.1 and of 07/11/2001 (I 633/00) E. 1.
90
Cf. Art. 42ter Para. 3 IVG and Art. 39 IVV.
91
Cf. Art. 42ter Para. 3 IVG.
92
93
94
95
4.2.2.5 Life Skills Assistance
A person who lives in his/her home environment and is permanently dependent on

life skills assistance due to impaired health is also referred to as a helpless person.
An allowance for life skills assistance represents an “additional and autonomous
provision of support”96 for psychologically, physically and mentally disabled
persons.97 If only the psychological health is impaired, the person involved must
at least be entitled to a quarter pension for helplessness to be assumed. The mere
requirement of permanent life skills assistance always refers to moderate
helplessness.98
There is need for life skills assistance if an adult insured person does not live in a
nursing home,99 is covered by invalidity insurance (IVG)100 and is no longer able to
live independently without the help of another person because of an impairment of
his/her health, if he or she depends on other persons with regard to the activities of
daily living or contacts outside the house or if there is a high risk of this person
permanently isolating him/herself from the outside world.101 Only such life skills
assistance is to be taken into account which is required on a regular basis and within
the context of the abovementioned situations.
It is of no importance whether the “assistance” is provided directly or indirectly.
The aide can therefore also carry out the required activities him/herself if the
insured person is not able to do so in spite of detailed instructions or surveillance/
control in consequence of health problems.102 Furthermore, it is also of no rele-
vance whether the assistance services are free of charge or not.103
Life skills assistance does, however, not cover direct or indirect help from
another person with respect to the six activities of daily living, nor does it cover
the provision of long-term care or surveillance to the person insured. It is rather a
complementary, autonomous provision of support.104 If the focus is on active
attendance with regard to the three aforementioned spheres of life, primarily with
a view to facilitating independent living, a need for surveillance is not to be
assumed.
96
BGE 133 V 450 E. 9.
97
Cf. judgments BGer of 23/10/2007 (I 317/06) E. 4.3.2, of 23/07/2007 (I 211/05) E. 2.2.3 and of
17/10/2005 (I 528/05) E. 1.
98
99
Cf. Art. 42bis Para. 5 IVG and Art. 38 Para. 1 IVV.
100
In accident insurance and for old-age pensioners (cf. BGE 133 V 569 E. 5.3 and 5.5) no
allowance is paid for life skills assistance. If the helplessness status is only partly due to an
accident, the insuree may claim from AHV or from invalidity insurance (IV) the amount incurred
for helplessness allowance which these insurances would pay out to the insuree if he had not had an
accident (cf. Art. 38 Para. 5 UVV).
101
102
Cf. BGE 133 V 450 E. 10.2.
103
Cf. BGE 133 V 472 E. 5.3.2.
104
Cf. BGE 133 V 450 E. 9.
4.3 Degrees of Helplessness
In the old-age and dependants’ insurance (AHV), invalidity and accident insurance,
the assessment of helplessness allowance follows the same criteria,105 but differs in
the amount.
In the case of severe helplessness, the insured person is completely helpless,
i.e. he or she regularly depends to a considerable degree on the help of another
persons with respect to all activities of daily living and is furthermore permanently
in need of long-term care or personal surveillance.106
In the case of moderately severe helplessness, the insured person regularly
depends to a considerable extent on other persons’ assistance despite the provision
of therapeutic appliances; this kind of assistance refers to
– most activities of daily living
– at least two activities of daily living and, in addition, permanent personal
surveillance
– at least two activities of daily living and, in addition, permanent life skills
assistance.107
Moderate helplessness means that an insured person, despite being provided
therapeutic appliance,
– regularly depends to a considerable extent on the assistance of other persons
with respect to at least two activities of daily living
– requires permanent personal surveillance
– requires permanent and especially intensive long-term care due to infirmity
– is only able to have social contacts due to substantial services regularly pro-
vided by other persons as a result of severe sensory impairments or severe
physical infirmity, or
– permanently depends on life skills assistance.108
Regarding the assessment, a medical professional will specify the extent to
which the insured person has limited physical or mental abilities as a result of
impairments. If the physical, psychological or cognitive impairments and/or their
impacts on the activities of daily living cannot be clearly determined, the medical
professional can, and even must, be contacted again for further clarification.
Indications provided by the persons offering support, normally the parents, must
also be taken into account, and diverging opinions of the persons involved must be
mentioned in the report. The final text of the report must contain plausible, detailed
and substantiated information regarding the individual activities of daily living and
105
Cf. BGE 127 V 115 E. 1d.
106
107
108
Table 1 Amount of helplessness allowance

Degree of Percentage of the maximum old-age Invalidity
helplessness pension levela insurance AHV
Severe 80 CHF 10 872.– CHF 936.–
Moderately 50 CHF 10 170.– CHF 585.–
severe
Moderate 20 CHF 468.– CHF 234.–
a
Cf. Art. 42ter Para. 1 IVG; Art. 43bis Para. 3 AHVG
must meet the requirements of permanent personal surveillance and long-term

care.109
A careful diagnosis of helplessness is of particular significance with respect to
progressive diseases such as dementia.
The monthly amount of helplessness allowance paid to insured persons who live
in their home environment is shown in Table 1 as follows:
4.3.1 Long-Term Care Allowance
4.3.1.1 General
Regarding the entitlement to curative treatment, the different social insurance

branches assume different obligations to compensate for care services in terms of
both the acknowleged forms of long-term care (hospital, institutional and Spitex
care, as well as care provided by family carers) and the scope of acknowledged care
(medical and non-medical care).
Curative treatment is exclusively taken over110 by one single social insurance
within the statutory limits, and financed,111 in the following order, by military
insurance,112 accident insurance, invalidity insurance, health insurance.
109
See, inter alia, judgment SozVersGer of the Canton of Zurich of 29/06/2009 (AB.2009.00020)
E. 3.1 (regarding an insuree born in 1942 who has been suffering from advanced Parkinson’s
disease in combination with dementia and hallucinations for over 20 years, and who has been
living in an elderly home since July 2007).
110
111
112
Long-term care compensation under military law is not referred to in the following.
4.3.1.2 Accident Insurance
4.3.1.2.1 General
Accident insurance only applies in the case of accident-related long-term care
dependency (occupational and non-occupational accidents and occupational
diseases113).
Upon retirement, a long-term care allowance can only be granted if the insured
person114
– suffers from an occupational disease,
– suffers from a recurrence of the disease or from long-term effects thereof and if
his/her capacity to work can be considerably improved through precautionary
medical measures or if a major impairment of health can be prevented,
– requires long-term treatment and care to maintain his/her remaining capacity to
work, or
– is incapacitated for work and if his/her state of health can be considerably
improved through medical precautions or if a major impairment of health can
be prevented.
4.3.1.2.2 Acknowledged Forms of Long-Term Care

Accident insurance pays for accident-related hospital, nursing home115 and Spitex
service costs.116 Family caregivers are also recognised as service providers.117
With a nursing diploma they can charge the insurance for their work in the same
way as freelance professional carers can according to the relevant collective
agreement.118
If they do not have a diploma, they can be granted an allowance, although no
legal entitlement exists.119 The relevant recommendations120 make an allowance
conditional on the fact that material damage can be proved (e.g. loss of income of
the otherwise also economically active spouse, travel expenses for children who
live outside the area) or on support going clearly beyond what a family member can
113
Cf. Art. 7 ff. UVG; Landolt (2010b, c).
114
Cf. Art. 21 Para. 1 UVG and further Subpara. 3 of the recommendation of the ad hoc Damages
Commission UVG on the application of UVG and UVV, No. 7/90 in-home care [Empfehlungen
der AD-HOC-Kommission Schaden UVG zur Anwendung von UVG und UVV, Nr. 7/90
Hauspflege], dated 27/11/1990, revised on 29/03/2005.
115
Cf. Art. 10 UVG in connection with Art. 15 ff. UVV.
116
117
Cf. Art. 18 Para. 1 and 2 UVV.
118
The UVG wage agreement can be downloaded from http://www.sbk-asi.ch/webseiten/deutsch/
8dokumente/freiberufliche/Tarifvertrag-Sozialw.pdf (last viewed on 16.10.2017).
119
120
See http://www.koordination.ch/fileadmin/files/ad-hoc/archiv/07-90-alt-08.pdf (last viewed on
16.10.2017).
justifiably be entitled to expect (such as providing daily care for hours and hours
over a longer period of time).
4.3.1.2.3 Acknowledged Long-Term Care Services

In the context of long-term care theories, “health and nursing care” means that care
is provided autonomously, either by one person alone or jointly with other qualified
professionals, to people of all ages, to families or other life partnerships, as well as
to groups and social communities, healthy or ill, in all life situations.
Professional long-term care implies the promotion of health, the prevention of
diseases and the provision of care to sick, disabled and dying people. Further key
tasks of long-term care are the satisfaction of interests and needs, the promotion of a
secure environment, investigation and research, participation in the formulation of
health policy as well as in the management of health care and in education.121
The legal definition of long-term care is more restrictive. In the context of health
insurance, “long-term care” relates to treatment and basic nursing care122 and in the
context of accident insurance it relates to medical care. In the case of “treatment
care”, care services fulfil the very purpose of treatment.123 Health insurance law
provides an exhaustive list of insured activities regarding treatment care,124 while
there is no legal definition for medical care in accident insurance law.
The nursing care concept as it is contained in accident insurance not only
comprises care treatment as related to health insurance but, in addition, all basic
nursing care measures. In this respect, notably those nursing care services are
insured which are either required to maintain a person’s remaining capacity to
work or which, in the case of incapacitated insured persons, serve to considerably
improve their state of health or prevent any major impairment of the latter.125
Measures taken in the context of the activities of daily living, household
maintenance or the handling of everyday matters are not part of medical care.
They may, however, substantiate the criterion of helplessness to the extent to which
the above-mentioned requirements have been fulfilled.126
121
The International Council of Nurses (ICN) defines the task of professional caregivers as
follows: “Nursing encompasses autonomous and collaborative care of individuals of all ages,
families, groups and communities, sick or well and in all settings. Nursing includes the promotion
of health, prevention of illness, and the care of ill, disabled and dying people. Advocacy,
promotion of a safe environment, research, participation in shaping health policy and in patient
and health systems management, and education are also key nursing roles” (see http://www.icn.ch/
about-icn/icn-definition-of-nursing/ – last viewed on 16.10.2017).
122
On this see infra margin No. 97 ff.
123
Cf. Art. 7 Para. 2 lit. b Subpara. 1 ff. KLV.
124
Cf. BGE 136 V 172 ¼ Pra 2010 No. 135 E. 4.3 and judgment BGer of 21/12/2010 (9C_702/
2010) E. 4.2.2.
125
Cf. Art. 21 Para. 1 lit. c and d UVG.
126
On this see supra margin No. 32 ff. and infra margin no. 102 ff.
4.3.1.3 Invalidity Insurance
4.3.1.3.1 General
Invalidity insurance as a final public insurance only provides for medical rehabil-
itation measures127 for insured persons up to the age of 20.128

Medical measures comprise the treatment which is provided by the physician him-
or herself or by qualified nursing care staff at the physician’s request either in
nursing homes or in the patient’s home environment (an exception being
logopaedic and psychomotoric therapies), as well as the administration of medi-
cally prescribed medications.129 When deciding on medical treatment to be pro-
vided in a nursing home or in the patient’s home environment, the recommendation
of the treating physician and the personal circumstances of the insured have to be
taken adequately into account.130

Medical Rehabilitation Measures
Domiciliary, outpatient or inpatient medical care (treatment including accessory
basic care131) is only provided if it does not aim at the treatment of the illness per
se,132 but directly at the integration into gainful employment or into the person’s
field of activity and if it is suited to permanently and significantly improve the
functional, pension-relevant performance capability or to prevent from major
impairment.133
127
Cf. Art. 12 ff. IVG.
128
Cf. Art. 12 and 13 IVG.
129
130
131
Accessory basic care means basic care measures which are required or become necessary in
connection with the performance of long-term care services. Accessory care involves, for instance,
basic care services related to body hygiene or, respectively, body cleansing (cf. Art. 7 Para. 2 lit. c
Subpara. 1 KLV) after bowel evacuation as may be necessary in line with long-term care treatment
(cf. Art. 7 Para. 2 lit. b Subpara. 11 KLV), cf. also BGE 120 V 280 E. 3b.
132
Treatment of the disease includes, in particular, the treatment of injuries, infections, as well as
of internal and parasitic diseases (cf. Art. 2 Para. 4 IVV).
133
Insurance to Cover Congenital Defects

Up to the age of 20, insured persons suffering from an acknowledged congenital
defect134 are entitled to the necessary medical treatment regarding their defect.135
Intensive Long-Term Care Supplements for Minors

What is also attributable to care is the supplement for intensive long-term care for
persons under age 18.136 This supplement is particularly granted for increased need
for treatment, basic care and permanent surveillance as compared to the needs of
non-disabled minors of the same age.137
4.3.1.4 Health Insurance
4.3.1.4.1 General
Health insurance applies in the event of sickness-related and accident-related long-
term care dependency, in the latter case, however, only subsidiarily to accident
insurance.138 To the extent that the insurance covering congenital defects does not
have to pay for long-term care services granted in the context of health insurance,
these services have to be compensated for by the health insurance in a subsidiary
way.139

Hospital Care
The costs of a hospital stay are fully covered and include board and lodging.140
Hospital care implies that there must be a medical or social necessity of
hospitalisation141 on the part of the insured person. If the insured person is no
134
See on this Annex of the Regulation of 9 December 1985 regarding birth defects [Verordnung
vom 9. Dezember 1985 u€ber Geburtsgebrechen (GgV)].
135
Cf. Art. 13 IVG; BGE 136 V 209 ff.
136
Cf. on this supra margin No. 46 ff.
137
Cf. Art. 39 Para. 2 and 3 IVV.
138
Cf. Art. 1a Para. 2 lit. b KVG.
139
Cf. judgments BGer of 10/06/2011 (9C_886/2010) E. 4.5.
140
Cf. Art. 25 Para. 2 lit. a KVG.
141
Necessity of hospitalisation is the case if the necessary diagnostic and therapeutic measures can
be performed in a purposeful way only in a hospital, or if all possibilities of outpatient care have
been exhausted, or if it is only by means of a hospital stay that there is still any prospect of success
with regard to treatment. The health insurance may also be obliged to cover the costs of a hospital
stay in cases where the state of health of an insuree does not necessarily require such a stay, but
where—due to particular personal circumstances—the patient can receive medical treatment
nowhere else but in a hospital (cf. BGE 126 V 323 E. 2b and 120 V 206 E. 6a).
longer in need of hospital care but requires nursing home or Spitex services,142 he
or she is entitled to a two-week period of intensive and transitionary care.143
Intensive and transitionary care services comprise all measures specified in Art.7
(2) KLV (diagnosis, advice, coordination and examination as well as treatment and
basic care) which prove necessary after a hospital stay and which have been
medically ordered by the hospital144 and are carried out by freelance professional
carers, a Spitex organisation or a nursing home.145
Nursing Home Care

Care services provided in a nursing home146 are compensated for according to the
principles of outpatient care147 on the basis of a time tariff.148
The Swiss Federal Council regulates the insured care services, the needs assess-
ment, the tariff and the quality controls149; in addition to the general criteria of
effectiveness, appropriateness and cost-effectiveness, the legislator insists on
ensuring the “necessary quality”150 when the insured care services are determined.
Spitex Care
Spitex care comprises daytime or night-time care151 provided by freelance profes-
sional carers pursuant to Art. 49 KVV,152 and by cantonally recognised Spitex
organisations in terms of Art. 51 KVV.
142
For patients with chronic psychiatric problems—even if their state of health is subject to
changes—the rules applicable to care home patients are generally valid, unless temporary deteri-
oration of the illness requires acute hospital treatment (cf. BGE 120 V 200 E. 6a and judgment
EVG of 20/10/2006 [K 20/06] E. 3.1).
143
144
145
Cf. Art. 7 Para. 3 KLV. Acute care and temporary long-term care are remunerated pursuant to
the hospital financing regulations (Regeln der Spitalfinanzierung (see Art. 49a KVG)) and not
according to the otherwise applicable long-term care tariffs (cf. Art. 25a Para. 2 KVG).
146
147
Cf. Art. 50 KVG.
148
Cf. Art. 25a Para. 1 KVG and Art. 7 Para. 1 lit. c KLV.
149
Cf. Art. 25a Para. 3 and 4 KVG.
150
151
Cf. Art. 25a Para. 1 KVG and Art. 7 Para. 2bis KLV.
152
Professional carers are approved if they hold a diploma from a school for health care and
nursing care (since the education reform in the healthcare system of 2004 referred to as “higher
vocational school / H€ ohere Fachschule” or “senior technical college / Fachhochschule”), as well as
an approval for exercising the profession in the respective canton, and practical experience in the
field of long-term care of a minimum of 2 years. A certificate issued by the Swish Red Cross
confirming the attendance of an “assistant caregiver (Pflegehelfer/in)” training does not count as a
professional nursing care diploma (120 h of theory, 12 days of practical training) (cf. judgment
EVG of 05/09/2000 [K 62/00] E. 2).
In contrast to the tariff of the Spitex organisations, the nursing home tariff does
not take account of the type of care measure provided but only of the time needed
daily for care measures, which must also be shown on the invoice.153
Caregivers Caring for Relatives

According to the KV, family carers who are not approved by the Swiss Common
Institution under the Federal Sickness Insurance Act (KVG) are not considered as
recognised service providers.154 Therefore, no obligation exists to remunerate
caregiving relatives,155 except for family carers who have been attributed a creditor
code (ZSR number).156
The employment of family caregivers by an approved Spitex organisation is not
considered in terms of care provided by relatives but in terms of a provision of
Spitex care that must be paid for.157 Employed family caregivers are only entitled to
provide relatively simple basic care and/or care in ordinary everyday situations,158
but no nursing care.159

General
Outpatient and nursing home health-care services comprise the following
measures160:
– diagnosis, advice and coordination (lit. a)
– examination and treatment (lit. b)
– basic care (lit. c)
Diagnosis, Advice and Coordination

The service category “coordination” of 1 January 2012 is based on an adjustment in
the course of the implementation of the national palliative care strategy of the Swiss
federal government. To ensure that persons dependent on long-term care can stay in
their home environment until the end of their lives even in the case of an unstable
state of health, it has been recognised that the often numerous providers of long-
153
Cf. Art. 9 Para. 2 KLV.
154
Cf. BGE 111 V 324.
155
Cf. BGE 126 V 330 ¼ RKUV 2000, p. 288 E. 1b.
156
Cf. BGE 133 V 218 E. 6, judgment BGer of 10/05/2007 (K 141/06 and K 145/06) E. 5.2.
157
Cf. judgment EVG of 21/06/2006 (K 156/04) ¼ RKUV 2006, p. 303 E. 4.
158
Cf. Art. 9a Para. 1 lit. a and b KLV, as well as judgments EVG of 25/08/2003 (K 60/03) E. 3.3
and VersGer Kanton St. Gallen of 18/08/2006 i. S. L. ¼ SGGVP 2006 No. 18.
159
Cf. judgment BGer of 19/12/2007 (9C_597/2007) E. 5.1.
160
Art. 7 Para. 2 KLV.
term care active in one private household should be well coordinated and that this
coordination service must be remunerated accordingly.161 The conditions for remu-
neration set out in the regulation are not confined to palliative situations.
Care Treatment
In the case of “care treatment”162 only those services are insured163 which are
explicitly included in a ‘positive’ list. Care treatment and basic care services164
differ in terms of tariffs.165 Helplessness allowance is only attributable to basic care
and not to care treatment.166
Basic Care
In the case of basic care, a distinction is made between general basic care and the
measures aiming at the surveillance and assistance of persons with psychological
impairments which help the latter cope with the basic activities of daily living167:
– General basic care includes, for example: Bandaging of legs, applying com-
pression bandages, patient bedding and positioning, moderate exercises, physi-
cal activation, decubitus prophylaxis, measures to prevent or remedy treatment-
related skin damage, assistance with dental and personal hygiene, dressing/
undressing, eating and drinking.168
– The measures aiming at the surveillance and assistance of persons with psycho-
logical illnesses include, among other things, the elaboration and practical
training of an appropriate daily routine, targeted training regarding the structur-
ing and encouraging of social contacts, assistance in respect of guidance and
safety measures.169
161
Cf. Rex et al. (2013).
162
The recognised treatment and nursing care services are listed in Art. 7 Para. 2 lit. b KLV.
163
Cf. BGE 136 V 172 ¼ Pra 2010 No. 135.
164
The conceptual term “basic and treatment care (Grund- und Behandlungspflege)” was intro-
duced to the German-speaking area in 1967 by hospital economist Siegfried Eichhorn. The terms
“basic care” and “treatment care” in this context were the results of translations from an essay in
English written in 1954, cf. Friesacher (2008), p. 192 f. The dualism in long-term care practise
arising from this distinction between relatively undemanding (basic) care measures and activities
requiring a higher qualification and medical expertise was abandoned for the benefit of a more
holistic approach in the course of the change in professional attitude and the emergence of the
nursing science, cf. Müller (1998), Mittelstaedt (1998).
165
Cf. Art. 7a Para. 1 KLV.
166
Cf. judgment BGer of 12/07/2012 (9C_43/2012) E. 4.1.1.
167
Cf. Art. 7 Para. 2 lit. c Ziff. 2 KLV.
168
Cf. Art. 7 Para. 2 lit. c Subpara. 1 KLV.
169
Cf. Art. 7 Para. 2 lit. c Subpara. 2 KLV.
It must be examined whether the service provided constitutes an insured long-

term care service or an uninsured attendance or household service.170 While
measures aiming at the surveillance and assistance of persons with psychological
illnesses may also cause obstacles with regard to the basic activities of daily living,
an allowance for such measures is only paid if the measures are necessitated due to
illness. Furthermore the measures must concern assistance provided to the person
and not material support (especially domestic help). The particular basic care shall
enable psychologically ill persons to cope with the activities of daily living again
themselves (‘help towards self-help’).171
Domestic help services are activities that relate to household maintenance (from
both the actual and the economic perspective) and comprise activities such as food
shopping, preparing meals, including help with eating and drinking,172 doing the
washing and so on, activities which are not part of the list of the basic care services
refunded by mandatory long-term care insurance.173 Depending on the context,
help with eating and drinking may be regarded as a basic care service.174
4.4 Assistance Allowance
4.4.1 General
It is only with the 6th revision of the IVG (Part I, 6a) that assistance allowance,
which had been discussed since the 1990s, was finally introduced as of 1 January
2012.175 This was to fulfill the purpose of the IV to make a self-determined,
independent life possible for the insured.176 A further purpose was to delay the
moving into a nursing home for as long as possible or to make it possible for a
patient to move back home from an old-age and nursing home.177
170
Cf. BGE 131 V 178 E. 2.2.3.
171
BGE 131 V 178 E. 2.2.3.
172
Cf. decision of the Swiss Federal Council of 09/03/1998 ¼ RKUV 1998 KV No. 28 p. 180 E. II.
173
Cf. BGE 136 V 172 E. 5.3.2. Accompaniment of a care-dependent person from the bedroom to
the dining room does not count as a care measure according to KVG/KLV either.
174
Cf. Art. 7 Para. 2 lit. c Subpara. 1 KLV and infra Rz 182 f.
175
Cf. Art. 42quater ff. IVG, Art. 39a ff. IVV and Circular on the Assistance Contribution
[Kreisschreiben u€ber den Assistenzbeitrag (KSAB)], valid as of 1 January 2013, as well as
auterungen zur Verordnung
explanatory notes on the regulation regarding invalidity insurance [Erl€
u€ber die Invalidenversicherung] of 16/11/2011 (hereinafter referred to as Explanatory Notes
Assistance Contribution/Erläuterungen Assistenzbeitrag); available online at http://www.bsv.
admin.ch/themen/iv/00025/index.html?lang¼de – last viewed on 16. Oktober 2017).
176
Cf. Art. 1a lit. c IVG.
177
The Swiss Federal Council Bundesrat expects 400 withdrawals from care homes and 700 avoid-
able care home admissions in the next 15 years, cf. Botschaft 6. IV-Revision, 2010, p. 1922.
4.4.2 Eligibility Requirements
The persons eligible are insured adult persons who live in their home environment
and are granted helplessness allowance according to the IV,178 not, however,
recipients of helplessness allowance from accident179 or military insurance180 or
from the AHV,181 or persons who suffer from only partially accident-related
helplessness.182
4.4.3 Acknowledged Forms of Assistance
Recognised as care assistants are persons who are employed by the insured under a
contract of employment,183 who are neither married to the former, nor live in an
officially registered or de facto partnership with him/her, and who are not related in
a direct line.184 The reason for excluding close family members185 is based on
support186 and maintenance obligations.187
4.4.4 Acknowleged Assistance Services
Eligibility to assistance allowance only exists if the need for care leads to one or
more assistants being employed for more than 3 months.188 The following activities
are reimbursable:
– activities of daily living,189
– household maintenance,190
– participation in society and organisation of leisure activities,191
178
Cf. Art. 42 quater Para. 1 IVG.
179
Cf. Art. 26 f. UVG.
180
Cf. Art. 20 MVG.
181
Cf. Art. 43bis AHVG.
182
Cf. Art. 42 Para. 6 IVG; Botschaft 6. IV-Revision, 2010, p. 1900.
183
Accordingly, dependent persons are not entitled to assistance services that are provided by
inpatient (care homes, hospitals, psychiatric clinics) or semi-inpatient institutions (sheltered
workshops, daycare centres and integration centres); or by organisations and other legal entities
(exception: advisory and support services).
184
Cf. Art. 42 quinquies lit. a and b IVG.
185
Cf. Botschaft 6. IV-Revision, 2010, pp. 1867 and 1902 f.
186
Cf. Art. 328 ZGB.
187
Cf. Art. 163, 276 f. ZGB.
188
Cf. Art. 39d IVV.
189
Cf. Art. 39c lit. a IVV and Botschaft 6. IV-Revision, pp. 1904 f.
190
Cf. Art. 39c liA t. b IVV and Botschaft 6. IV-Revision, pp. 1904 f.
191
Cf. Art. 39c lit. c IVV and Botschaft 6. IV-Revision, pp. 1904 f.
– childcare and education,192

– non-profit or voluntary activities,193
– vocational education and training,194
– economic activities in the regular labour market, except activities in the
protected environment of workshops or day centres and the attendance of
vocational training courses in disability organisations,195
– surveillance during the day,196 and
– night-time services.197
Aids compensating for the loss of hearing or vision are recognised as direct
support, while guidance, control and surveillance in the context of pursuing activ-
ities are recognised as indirect support.198
The need for support required in order to be granted assistance allowance is
determined by way of a standardised assessment tool (FAKT) for direct and indirect
support services.199 The time spent on support services covered by helplessness
allowance,200 the contributions paid for third party services instead of devices201
and the contributions paid by the mandatory health care insurance for basic care202
in terms of care services203,204 have to be deducted from the monthly need for
assistance205 as shown in Table 2.
The contribution paid for assistance amounts to CHF 32.80 per hour,206 in the
case of necessary special qualifications pursuant to Art. 29 (c) lit. e-g it amounts to
CHF 49.15 per hour,207 and for night-time services, depending on the intensity, to a
maximum of CHF 87.40 per night.208
192
Cf. Art. 39c lit. d IVV.
193
Cf. Art. 39c lit. e IVV.
194
Cf. Art. 39c lit. f IVV and Botschaft 6. IV-Revision, pp. 1904 f.
195
Cf. Art. 39c lit. g IVV.
196
Cf. Art. 39c lit. h IVV.
197
Cf. Art. 39c lit. i IVV.
198
See Rz 4005 ff. KSAB.
199
See on this Latzel and Andermatt (2007).
200
Cf. Art. 42 ff. IVG.
201
202
Cf. Art. 25a KVG i.V.m. Art. 7 Para. 2 lit. c KLV.
203
There is no need for coordination with regard to treatment care services, as these are not taken
into the equation for assistance contribution (cf. Art. 42sexies Para. 3 IVG) and are exclusively
covered by the health and accident insurance (cf. Art. 25a KVG and Art. 7 Para. 2 lit. b KLV and
Art. 18 UVV). Margin no. 4110 KSAB, on the other hand, provides for a deduction of medical care
measures pursuant to Art. 13 IVG.
204
Cf. Art. 42sexies Para. 1 and 3 IVG.
205
Cf. margin No. 4105 ff. KSAB.
206
Cf. Art. 39f Para. 1 IVV.
207
208
Table 2 Maximum amounts per month for support services

Support Services Helplessness Hours
Activities of daily living, household maintenance, participation in Moderate 20
society and organisation of leisure time Moderately 30
severe 40a
Severe
Education and childcare, pursuit of non-profit or voluntary activities, 60b
vocational training or education, pursuit of an activity in the regular
labour market
Surveillance during daytime 120c
a
Cf. Art. 39e Para. 2 lit. a IVV
b
Cf. Art. 39e Para. 2 lit. b IVV
c
Cf. Art. 39e Para. 2 lit. c IVV
5 Medical Aids
5.1 Provision of Medical Aids
Medical or nursing aids (nursing beds, wheelchairs, aids for incontinence,

ointments etc.) are either covered by health insurance (KV) within the framework
of the list of materials and objects (the so-called “MiGel” list)209 or by invalidity
insurance (IV) even if the insured person has already acquired the aid in question210
or a similar aid.211
The lists of medical aids exhaustively specify the potential categories of aids. In
the case of each category of aids it must be investigated whether the list of the
individual aids (within this category) is exhaustive or whether it is only exem-
plary.212 The respective aids can be provided in kind213 or in terms of a monetary
benefit.214
In item 14 of the list of aids, the invalidity insurance (IV) has specified all
medical aids available (aids for self-provision). Neither the AHV nor the accident
insurance have a catalogue of aids available in addition to this list.
Since 1 January 2011 the cantons have been obliged to pay for the necessary,
appropriate, economic medical—and especially nursing—aids, with the scope to be
determined by the cantons.215
209
Annex 2 on KLV (available at http://www.bag.admin.ch/themen/krankenversicherung/00263/
00264/04184/index.html – last viewed on 16.10.2017).
210
Cf. Art. 21 f. IVG and HVI, Art. 11 UVG and HVUV, Art. 21 MVG.
211
Cf. Art. 2 Para. 5 HVI.
212
Cf. BGE 121 V 260 E. 2b and Art. 2 Para. 5 HVI.
213
214
Cf. Art. 21bis Para. 1 and 2 IVG, as well as Art. 21 Para. 2–4 MVG.
215
Cf. Art. 14 Para. 1 lit. f ELG. Most cantons have kept up the previous list of nursing aids issued
by ELKV.
5.2 Allowances for Third Party Services
Invalidity216 and military insurance217 provide for an entitlement to third party

services if the insured person fulfills the prerequisites for being provided a certain
medical aid, especially in the context of a permanent living wage job,218 but cannot
make use of the aid for reasons related to his/her personal circumstances.219
Instead of the aid, the insured person will be granted a monetary benefit. The
monthly allowance for third party services must not exceed the insured person’s
gross monthly income from employment nor one and a half times the amount of the
minimum regular simple retirement pension, i.e. CHF 1755.00 (as of 1 January
2013).220 If the insured person is entitled to an aid which he or she cannot handle
independently, e.g. drive a motor vehicle, he or she must be refunded the substitu-
tion costs up to the abovementioned maximum amount.
If the insured person has already been adequately provided with aids such as a
hearing aid, for example, services from other persons, in particular the costs for a
sign language interpreter, cannot be granted due to their substitutive nature.221
Services provided by other persons may only compensate for the loss of certain
parts or functions of the human body in order to enable the insured to get to work or
cope with professional tasks.222
The list of aids of the invalidity insurance (IV) especially specifies the following
third party services223
– transport and accompanying services for persons with disabilities to get from
home to work and back instead of using a motor vehicle or a guide dog, and
especially also taxi transportation,
– the reading out of texts indispensable for work in the case of blindness and low
vision,224
– interpreting services for especially demanding teaching points or topics of
conversation in the case of deafness or severe hearing loss.
In the case of agricultural or commercial activities, a self-amortising loan can
be paid out for costly aids.225
216
Cf. Art. 21bis Para. 2 IVG. The rules of IV also apply accordingly for AHV (cf. Art. 4 HVU).
217
Cf. Art. 21 Para. 4 MVG.
218
Cf. 118 V 200 E. 3c.
219
Cf. BGE 112 V 11 E. 1a and EVGE 1968, p. 272.
220
Cf. margin No. 1042 KHMI and Annex 1 Subpara. 6.4.
221
Cf. judgment EVG of 17/03/2005 (I 354/03) E. 3.4.
222
Cf. BGE 112 V 11 E. 1b and 96 V 84.
223
Cf. margin No. 1037 KHMI.
224
See on this judgment BGer of 18/09/2009 (9C_493/2009) E. 5.2.2.3.
225
Cf. Art. 21bis Para. 2bis IVG; Cf. judgment BGer of 25/01/2008 (9C_592/2007) E. 3.2 and
Communication of 21/02/2001 on the 4th Revision of the Federal Act on Invalidity Insurance
[Botschaft vom 21.02.2001 u€ber die 4. Revision des Bundesgesetzes u€ber die
Invalidenversicherung] ¼ BBl 2001, pp. 3205 ff., 3264.
6 Additional Allowances
6.1 General
Persons whose place of residence and habitual residence is in Switzerland are

entitled to additional allowances if they receive a pension or helplessness allowance
from the invalidity insurance226 or if they were entitled to an invalidity pension
from the IV in the case of completion of the minimum contribution period pursuant
to Art. 36 IVG.227 The insured additional allowances consist of an annual supple-
mentary benefit228 as well as of an allowance for costs incurred due to illness and
disability.229 Both benefits include co-insurance of the risk of nursing care needs
which is, however, not fully covered.
The additional allowances aim at guranteeing the minimum subsistence level
with respect to social security230 beyond the absolute minimum level granted by
social assistance231 and are subsidiary to other social security benefits (especially
from health care and accident insurance232).
6.2 Annual Supplementary Benefits
6.2.1 Expenditures Eligible for Coverage
The difference between eligible expenditures and revenues is paid out on a monthly
basis.
6.2.1.1 Home Care
Expenditures eligible for coverage comprise, inter alia, the amount needed for
general living expenses, housing costs and the health insurance premium. In the
case of unmarried partner or family households, an overall assessment is made
226
Persons entitled to helplessness allowance are granted supplementary benefits only once they
have reached 18 years of age (cf. Art. 6 ELG); Landolt (2011).
227
Cf. Art. 4 Para. 1 lit. c and d ELG.
228
Cf. Art. 3 Para. 1 lit. a ELG.
229
Cf. Art. 3 Para. 1 lit. b ELG.
230
231
The allowable expenses of CHF 31340.– for a single person plus expenses as mentioned in Art.
10 Para. 3 ELG are higher than the subsistence minimum under social assistance as referred to in
the SKOS guidelines.
232
Cf., among others, e.g. judgment EVG of 23/01/2002 (P 72/01) E. 2.
which takes account of the acknowledged expenditures and revenues of all its
members.233
Expenditures due to disability can be eligible for coverage up to a maximum of
CHF 3600.00 for renting a wheelchair-accessible home in addition to the annual
maximum amount234; in the case of a privately owned home this refers to non-
value-maintaining investments made on grounds of disability (e.g. the installation
and use of a stairlift).235
6.2.1.2 Nursing Home Care
In the case of a patient living in a nursing home, an amount for personal expenses is
taken into account with a view to the general living requirements and a daily
allowance to accommodate the housing costs.236 Because of the principle of
equal treatment of nursing home and home care, the resident of a nursing home
may receive, as an additional allowance, the equivalent of the maximum amount of
the minimum subsistence level calculated for a person living in the home environ-
ment.237 If the costs for a nursing home exceed the minimum subsistence level of
supplementary benefit recipients who are provided care in their home environment,
the cantons must cover the balance.238
With effect from 1 January 2011, pursuant to federal law, the daily allowances
eligible for coverage in the case of accommodation in a recognised nursing home
must be high enough to prevent the insured from having to draw on social
assistance.239
When implementing the prohibition of making a person dependent on social
assistance, the cantons have a margin of discretion so that it is not self-evident that a
pensioner is granted enough supplementary benefits in order to be able to pay for
the nursing home stay.240 The prohibition of making a person dependent on social
assistance only applies in the case of “recognised nursing home” stays.241
The canton must ensure that every person has the chance of actually being
accepted. On principle, the insured cannot be deprived of the possibility to choose
233
234
Cf. Art. 10 lit. b Subpara. 3 ELG.
235
See Art. 16 ELV and Subpara. 4.3.9 of Circular No. 11 of 31/08/2005 on the deduction of
expenses incurred for healthcare and accidents, as well as for costs incurred due to disability
[“Abzug von Krankheits- und Unfallkosten sowie von behinderungsbedingten Kosten vom
31.08.2005”] of the Swiss Federal Tax Administration.
236
Cf. Art. 10 Para. 2 lit. a ELG.
237
238
Cf. Art. 13 Para. 2 last Sent. ELG.
239
240
Cf. BGE 138 V 481 ¼ Pra 2013 No. 31 E. 4.
241
Cf. Art. 10 Para. 2 lit. ELG.
between the homes specified on the cantonal list. In the case of high accommoda-
tion costs, the home may accept the person at the rate covered by the canton.242
The maximum amount granted by the canton of residence is also valid for a
specialised nursing home in another canton, even if the latter provides for a higher
maximum amount eligible for coverage.243
When calculating the supplementary benefit for the spouse who does not live in a
home or hospital, only the rent allowable for single persons of currently CHF
13,200.–is taken into consideration.244 The result of this regulation is that the
spouse who does not live in the nursing home is at risk of having to leave the
marital home in spite of the higher exemption limit for assets of CHF 300,000.–245
if the annual costs for the home exceed CHF 13,200.–
6.2.1.3 Allowable Revenues
Allowable revenues (income from gainful employment and pensions, interest

revenues, etc.) are deducted. In the case of old-age pensioners, one fifteenth (for
single persons) or one tenth (for the combined assets of spouses) of the amount
exceeding the exemption limit for assets (CHF 37,000.–for single persons and CHF
60,000.–for the combined assets of spouses) can be attributed to these revenues.246
In the case of a nursing home stay, the cantons may increase the proportion of
attributable assets to 20%.247
With the entering into force of the new law on the financing of long-term care of
1 January 2011, an increase in the exemption limit for assets for capital invested in
an owner-occupied residential property to CHF 300,000.–is to be granted in the
event that one spouse lives in a nursing home and the other spouse in a self-owned
property or that both spouses live in a self-owned property and one of them is
provided helplessness allowances by the AHV, IV, accident or military
insurance.248
If the daily tariffs of a nursing home or a hospital also comprise the costs for
long-term care of a helpless person, the helplessness allowance granted by the
AHV, IV, military or accident insurance will be attributed to the deductible
revenue.249
242
Ibid.
243
Cf. BGE 138 V 481 ¼ Pra 2013 No. 31.
244
Cf. Art. 1c Para. 2 ELV.
245
On this see infra Rz 142.
246
Cf. Art. 11 Para. 1 lit. c ELG.
247
248
Cf. Art. 11 Para. 1bis ELG.
249
Cf. Art. 15b ELV.
6.3 Reimbursement of Costs Incurred Due to Illness

and Disability
6.3.1 General
The recipients of an annual supplementary benefit can claim a compensatory

payment for the costs incurred due to illness and disability.250 Persons living in
nursing homes are, however, only entitled to receive a maximum of CHF 6000.–per
year.251 Insured persons who are not entitled to an annual supplementary benefit
because of a revenue surplus and who otherwise meet all the eligibility require-
ments regarding the payment of an annual supplementary benefit, are entitled to be
reimbursed the costs incurred due to illness and disability exceeding the revenue
surplus.252
6.3.2 Recognised Costs Incurred Due to Illness and Disability
The costs incurred due to illness and disability to be reimbursed are specified by the
cantons253 in conjunction with the federal law.254 According to federal law, the
cantons are obliged to reimburse as follows255:
– dental treatment,
– assistance, long-term care and attendance in the home environment and in
daycare centres,
– medically prescribed spa therapies,
– diets,
– transport to the nearest place of treatment,
– aids and
– co-payments according to Art. 64 KVG.
As of 1 January 2011, the cantons have been obliged to issue their own
regulations regarding the compensation for the loss of income of family
caregivers.256
250
251
Cf. Art. 14 Para. 3 lit. b ELG.
252
253
254
Cf. Art. 14 Para. 1 and 3 ELG.
255
256
In the Canton of Aargau, for instance, currently a loss of income of 10% over a period of
4 weeks entitles caregivers to claim compensation, § 14 Para. 3 of the Regulation of 17 November
2010 on the reimbursement of costs of supplementary benefits (ELKV-AG) incurred for health
care or due to disability [Verordnung über die Vergütung von Krankheits- und
Behinderungskosten bei den Ergänzungsleistungen (ELKV-AG) vom 17. November 2010].
The cantonal implementation provisions regularly refer to the former federal

principles,257 but occasionally also provide for allowances for family caregivers
irrespective of a proof of loss of income.258
The question as to whether and to which extent family caregivers might have
taken up gainful employment is to be assessed in the light of the personal, family,
economic and social circumstances under consideration of the extent of long-term
care to be provided.259 Given the difficulties of proof, the administration has to
ascertain “with particular care” the facts of a possible gainful employment confer-
ring entitlement to an allowance.260
6.3.3 Maximum Amounts
Within the framework of the federal law, the cantons are free to determine the costs
which are to be reimbursed as well as the maximum amounts which are to be
paid.261 In particular, they are authorised to confine the cost reimbursement to the
expenses necessary to ensure an economic and appropriate service provision.
The recognised costs incurred due to illness and disability will be reimbursed
within the scope of the general and specific maximum amounts on the basis of the
level of helplessness. As of 1 January 2011, the cantons have been entitled to fix
general and specific maximum amounts. The general cantonal maximum amounts
must not fall below the following amounts as shown in Table 3:
Single and widowed persons living in their home environment or persons living
in their home environment with the spouse being accommodated in a nursing home
or hospital, who are entitled to receive a helplessness allowance from invalidity
insurance (IV) or accident insurance (UV), obtain an increase of the minimum
amount from CHF 25,000.– to CHF 90,000.– in the event of severe helplessness,
and to CHF 60,000.– in the event of moderately severe helplessness.262
For married couples who live in their home environment with one or both of
them being helpless, the minimum amount of CHF 50,000.– increases as shown in
Table 4:
The purpose of the specific maximum amount of CHF 90,000.– for severely
helpless single persons is to allow persons in need of long-term care and attendance
services to live independently in their home environment for as long as possible
257
Cf. judgment BGer of 25/04/2007 (P 18/06) E. 4 and SVR 1998 EL No. 10 p. 25.
258
In the Canton of Bern, for instance, a maximum of CHF 9600.– per year may be paid, cf. Art.
15 Para. 3 EV ELG (BE).
259
Cf. judgment BGer of 11/02/2009 (8C_773/2008) E. 5.2.
260
Ibid. E. 5.2.
261
Cf. Art. 14 Para. 2 and 3 ELG.
262
Cf. Art. 14 Para. 4 ELG and Art. 19b Para. 1 ELV. The same increase is granted also to
recipients of a helplessness allowance pursuant to AHV who had previously received helplessness
allowance pursuant to IV, cf. Art. 14 Para. 5 ELG.
Table 3 Amounts for persons living in the home environment

Maximum
Category of persons amount
Single and widowed persons, as well as spouses of persons living in nursing CHF 25,000.–
homes or hospitals
Married couples CHF 50,000.–
Full orphans CHF 10,000.–a
Persons living in a nursing home CHF 6000.–b
a
Cf. Art. 14 Para. 3 lit. a ELG
b
Cf. Art. 14 Para. 3 lit. b ELG
Table 4 Maximum amounts for married couples

Number of persons receiving Maximum
helplessness allowance Degree of helplessness amount
Both spouses With each of them suffering from severe CHF 180,000.–
helplessness
With each of them suffering from moder- CHF 120,000.–
ately severe helplessness
With one of the spouses suffering from CHF 150,000.–
severe helplessness
With one of the spouses suffering from CHF 150,000.–
moderately severe helplessness
One spouse Suffering from severe helplessness CHF 115,000.–
Suffering from moderately severe CHF 85,000.–
helplessness
without having to be accommodated in a nursing home. This is why the increase of

the general maximum amount of CHF 25,000.– is confined to the reimbursement of
costs incurred for long-term care and attendance services.
Unlike the general maximum amount (CHF 25,000.– for single persons), the
helplessness allowance is deducted in advance when determining the specific
maximum amount (90,000.– for single persons) as the increase in the amount
only applies “if the costs for long-term care and attendance services are not covered
by the helplessness allowance”.263
263
Art. 3d Para. 2bis 2nd clause to Sent. 1 aELG and further judgment BGer of 10/08/2009
(9C_84/2009) E. 4.2.
7 Care Credits
7.1 General
The childcare264 and (long-term) care credits265 introduced on 1 January 1997

consist of an annual pension credit for persons who are mandatorily or voluntarily
insured according to the AHVG and who care for relatives entitled to a helplessness
allowance of a medium degree.266 In the case of minors, this generally only applies
to the period between the ages of 16 and 18, since childcare credits are taken into
account for ages up to 16.267
7.2 Eligibility Requirements
7.2.1 Recognised Family Carers
The caregiver must be a relative in the ascending or descending line or a brother or

sister of the insured, or a spouse, an officially registered partner(ship), a parent-in-
law or a stepchild.268 The care credit is an egalitarian one, irrespective of the
intensity of attendance or long-term care, and corresponds to three times the yearly
paid minimum full old-age pension as of the date when the person involved
becomes eligible for the pension.269 In the case of married persons, the care credit
is split equally during the calendar years of their marriage.270 If more persons fulfill
the requirements regarding care credits, the credits are equally divided between all
eligible persons.271
7.2.2 (Moderately) Severe Helplessness
The person in need of care must—actually or when required—be entitled to a

helplessness allowance granted by AHV, IV or the mandatory UV or MV for at
least moderately severe helplessness.272 Whether the allowance is received or not is
264
Cf. Art. 29sexies AHVG.
265
Cf. Art. 29septies AHVG and Art. 52 g ff. AHVV, as well as Circular regarding bonuses for
caretaking (KSBGS; as per: 01/01/2012).
266
Cf. Art. 29septies Para. 1 AHVG.
267
Cf. Art. 29septies Para. 2 AHVG, margin No. 1002 KSBGS.
268
269
270
271
Cf. Art. 52i AHVV.
272
irrelevant.273 The supplement for intensive long-term care274 is put on a par with
helplessness allowance.
7.2.3 Being within Easy Reach
Since 1 January 2012 it is sufficient if the person to be cared for is within easy
reach,275 if the caregiver does not live further away than 30 km or if he or she is able
to reach the person to be cared for within 1 h.276
8 Further Securities
8.1 Tax Deductions
According to the Disability Discrimination Act of 13 December 2002, the

disability-related costs of the taxpayer or of the disabled persons he or she cares
for, are deducted from the entire taxable income, provided that the taxable person
bears the costs him/herself.277
8.2 Cantonal Support of Family Caregiving
Further financial support for family caregiving is granted under cantonal law in
terms of specific tax deductions278 as well as long-term care allowances in line with
the healthcare legislation.279
273
Cf. BGE 126 V 435 ff.
274
Cf. margin No. 1002 KSBGS.
275
276
Cf. Art. 52 g AHVV, margin No. 3010.1 KSBGS.
277
Cf. Art. 9 Para. 2 lit. Hbis StHG and Art. 33 Para. 1 lit. Hbis DBG.
278
See e.g. § 42 I d StG AG (CHF 3000.–) and Art. 28 lit. g StG BE.
279
Cf. § 24 lit. c SPG AG and § 21 lit. b SPV AG (care compensation to the amount of the
maximum orphan’s pension pursuant to AHVG), § 11 SpitexG BS and §§ 6 ff. SpitexVO BS (for
care services required starting from 1 h per day and amounting to a maximum of 35% of the
highest AHV pension level) and Art. 4 HPflG FR (flat-rate compensation of CHF 25.– per day);
Art. 14 Para. 1 ELG.
8.3 Social Assistance
Costs for attendance and long-term care services which are not covered by any
other security system must be covered by social assistance. The latter is to be
distinguished from emergency aid and is to be regulated by the cantons. Each of the
cantons refers in its own social welfare legislation to the guidelines on the form and
extent of social assistance.280 The basic coverage comprises the basic living needs
inclusive of health care costs without co-payments,281 as well as housing costs, plus
the health insurance premium.
Situation-related services concerning long-term care and attendance:
– Expenses relating to illness and disability: expenses for services which are not
part of basic medical care, but are beneficial and useful in specific individual
cases.282
– Acquisition costs and expenses for services which are not rewarded in terms of
an income: effective costs which occur in the context of other services which are
not rewarded in terms of wages (volunteer or neighbourhood work, family
caregiving, participation in integration or qualification programmes, etc.). The
effective costs which relate to the additional costs for activities promoted and
supported through social assistance have to be taken into account in their entirety
when establishing the budget.283
– Integration allowance: This allowance is granted to persons aged 16 and older
who are not engaged in gainful employment and who strive for their own social
and/or vocational integration as well as for the integration of people around
them. The amount of the integration allowance varies between CHF 100 and
CHF 300 per person per month, depending on the service provided and on its
significance for the integration process.284
9 Critical Appraisal and Potential Future Remedies
9.1 Critical Appraisal
The need for the solidary community to provide for those requiring help and long-
term care has been recognised in Switzerland since 1848.
280
Cf. http://www.skos.ch/store/pdf_d/richtlinien/richtlinien/RL_deutsch_2012.pdf (last viewed
on 16.10.2017).
281
Cf. Subpara. B.2.1 SKOS Guidelines [SKOS-Richtlinien] 2012.
282
Cf. Subpara. C.1.1 SKOS Guidelines [SKOS-Richtlinien] 2012.
283
Cf. Subpara. C.1.2 SKOS Guidelines [SKOS-Richtlinien] 2012.
284
Cf. Subpara. C.2 SKOS Guidelines [SKOS-Richtlinien] 2012.
By introducing old-age and survivors’ insurance (AHV), as well as invalidity

insurance, a change in the system was effected roughly 50 years ago. In lieu of the
supplementary helplessness pension, all social insurance systems introduced a
helplessness allowance. This insurance benefit became, and for decades remained,
the main compensatory measure relieving assistance and long-term care needs in
terms of an allowance, as it made it easier for persons in need of help or care to
remain in their homes despite their deficient state of health.
The extension of the material scope of validity of helplessness allowance and the
introduction of new insurance benefits for persons in need of help and long-term
care has made the Swiss long-term care insurance system quite complex, often at
the risk of providing either redundant or deficient coverage, thus causing confusion
among insurees and insurers and requiring better coordination.
The sometimes unspecified and confusing definitions of “helplessness” and
“long-term care dependency” are factors contributing to the inconherence of the
system, meaning that ultimately each case must be examined individually to see if
the awarded benefit category complies with the actual needs related to the respec-
tive definition.
In terms of the rule of law, this is questionable as, for one thing, no legal
certainty is granted and, for another, legal practice shows that the insurers often,
and increasingly so, go into debates with their insurees as to the scope of their
obligation to grant benefits in order to effect minimum payouts; often, they also
claim that provision of the required help or long-term care benefit is already
covered through a different insurance benefit. Since helpless persons and persons
dependent on long-term care are among the weakest in society, they easily fall
victim to such intransparent systems.
A further disadvantage is effected by partial object financing or the subsidizing
of benefit providers. Starting from the legislator’s approach in the 1950 to levy
contributions in IV for building and operation funding with a view to facilities for
the disabled and disability support organisations, object financing was increasingly
expanded and has recently been cantonalised on the occasion of the reregulation of
the finance equality measures and the introduction of the “new financing solution
for long-term care measures”.
The coexistence of long-term care insurance benefits and subsidy payments to
long-term care institutions has not only complicated the system, but also caused a
deficit in autonomy to the extent that persons in need of long-term care, despite
receiving some funds, do not receive the entirety of funds that the State spends on
their behalf. Such a system only fosters a reduction in the freedom to choose among
the existing range of benefits, and impedes patient autonomy.
9.2 Developing New Solutions
The concept of long-term care dependency requires a new definition, and it is

particularly umbrella terms like “basic care and care treatment” and “activities of
daily living” that must be in the focus of this process. Already in the 1990s was the
usage of and differentiation between the terms ‘basic care’ and ‘care treatment’
deemed obsolete from the viewpoint of long-term care practice as well as from a
legal standpoint.285 Even though the two terms were used in the same context in
some first course book editions on long-term care in the German language,286 it has
not been used in current, particularly not international, course books provided for
long-term care training.287
Instead of differentiating, the two categories can be subsumed under the concept
of a long-term care process as a nationally and internationally established
categorisation system.288 This long-term care process includes the anamnesis
(diagnosis289) and points at long-term care measures to be taken. What is more, it
also includes the evaluation of measures initiated, a point which today is no longer
listed in the KLV, but which is becoming ever more important with a view to
current quality standards.290 Another advantage of the concept of a long-term care
process is the fact that, by comparison with context-unrelated catalogues listing the
individual benefits and their costs, the process-related inclusion of a measure is
targeted to a much greater extent at an approach combining quality and cost
optimisation.
Also the second umbrella term, i.e. the “(instrumental) activities of daily living”,
dates back to publications from the 1960s.291 In the literature on long-term care, a
number of different models and interpretations are referred to and discussed
critically.292 What is remarkable, on the one side, is the great variation of activities
offered, ranging from 14 to 6 in number293 and, on the other side, the fact that
already during the early phase of the concept different activities were defined
within the 6 ADL.294
Also interesting is the circumstance that, as regards instruments that include only
few ADL, long-term care measures focus on the somatically oriented status and, in
this context, primarily outline deficits (bathing, dressing, toilet use etc.). What is not
addressed by the focus on these instruments are the communicative functions which
serve, above all, to evaluate the measures taken (e.g. evaluation of whether or not a
patient is in pain, among other things), and the assessment of social participation
capacities, e.g. of how a person keeps active in daily life. Accordingly, today’s
instruments for the assessment of long-term care dependency must be chosen to the
285
Cf. Klie (1998), Müller (1998).
286
Cf., inter alia, Juchli (1973).
287
See e.g. Menche (2011), Schewior-Popp et al. (2012), Rosdahl and Kowalski (2011).
288
See e.g. Wilkinson (2012).
289
Cf. Art. 7 Para. 2 lit. a KLV.
290
Cf. Bundesamt für Gesundheit (2009).
291
Lawton and Brody (1969).
292
E.g. Feinstein et al. (1986), Bennett (1999), Sikkes et al. (2009).
293
14 ATL in Henderson (1960) and 6 in Lawton and Brody (1969).
294
Cf. Katz et al. (1963), Lawton and Brody (1969).
extent that they facilitate equal treatment for persons with somatic or, respectively,
psychological and communicative-cognitive impairments.
What is common to both umbrella terms is the fact that they categorise functions
or, respectively, functional impairments, without taking account of the context. The
“eating and drinking” category is a good example showing that the mere focus on
context-unrelated functions will lead to inaccurate assessments. A person with two
broken arms who is otherwise healthy, for instance, will be temporarily dependent
on assistance with eating and drinking. In this case, help will have to be offered in
the form of repetitive feeding assistance. A person with semi-paralysis who has
problems swallowing and chewing will require entirely different help with “eating
and drinking” as regards the way this person is fed and the time it takes to offer this
assistance.
One example for the combination of somatic and cognitive impairments and for
the respective needs assessment is oral hygiene in dementia patients. The minimum
oral care in this case implies the following tasks: manual assistance of patients if
they can still brush their teeth themselves, or performing the entire process on them
if they cannot; providing communicative instructions on how to brush their teeth or
to open their mouths; examination of the oral cavity; and finally, evaluation of the
condition of their teeth and of the mucous membranes of the oral cavity.
In view of these different requirements for one and the same ADL category, it
cannot simply be a case of “basic care”, since the problematic somatic or cognitive
circumstances—often combined with spatial limitations if care is provided in the
home of the patient—are sometimes anything but easy. Accordingly, manual
activities must be combined with the appropriate behaviour or motivation tech-
niques and continuously adjusted to the progression dynamics of the illness.
The more recent efforts to systematise the definition and content of long-term
care dependency have taken this complexity of long-term care dependency into
account. In Germany, a new evaluation instrument for the assessment of long-term
care dependency has recently been developed,295 preceded by thorough analysis of
the term and of international procedures. The eight newly elaborated categories296
are embedded in an evaluation procedure which is coherent in terms of content and
assessment, oriented by resources rather than deficits, and which offers a solid basis
for individual planning of long-term care measures.
Since as early as 2001, the WHO, too, has made its “International Classification
of Functionality, Disability and Health (ICF)”297 available for general use; this
classification can be used - contrary to widespread (mis)understanding—not for the
assessment of disability only, but that of any other health impairment, too. On the
295
Cf. Wingenfeld et al. (2011).
296
The eight categories for the assessment of long-term care dependency are: 1. mobility, 2. com-
municative and cognitive functions, 3. behaviour and psychological problem-situations, 4. (food)
self-sufficiency, 5. ability to deal with illness/therapy-related challenges and strains, 6. manage-
ment of everyday life and social contacts, 7. out-of-home activities, 8. household maintenance.
297
World Health Organization, 2001 (see http://www.who.int/classifications/icf/en/ – last viewed
on 16.10.2017).
basis of personal and contextual factors, the respective functional impairment is

assessed and evaluated. This instrument has become established particularly in
rehabilitative health care.
It can be noted that both procedures298 are not primarily oriented towards the
services delivered by professional staff, i.e. towards the care needs, but towards the
living environment of the patients. It is, after all, the latter that is relevant for the
years or decades during which patients have to be able to live with their health
impairments. This is indicative of the increase in user orientation, and the call for
self-responsibility and self-determination on the part of the patient; these criteria
have, for some time now, been stipulated in the health system, and in Switzerland
they were entrenched in the new legislation concerning the protection of adults and
children on 1 January 2013.
In Switzerland, the reimbursement of help and care services has been designed in
terms of a catalogue listing the individual benefits and services or, respectively, of a
time or tax value for individual services.299 Such a system may well serve purposes
related to one-off, short and clinically foreseeable episodes. However, it is less
suitable as a reimbursement system for—from an epidemiological point of view—
increasing, long-term and therapy-intensive care processes.300 The alternative
could be a lump-sum or capitation system, such as has existed and been practised
by Swiss general physicians as a model of prospective reimbursement since the
1990s.301
In long-term care provision, the needs-based “Resident Assessment Instrument”
(RAI) is very common.302 Integrated in it is a module for “Resource Utilization
Groups” (RUG), which in terms of concept is comparable with the “Diagnose
Related Groups” (DRG), thus facilitating lump-sum categorisation of benefits/
services groups. The RUG module is not, however, integrated in the RAI-Home
Care Schweiz software that was adapted for the Swiss Spitex institutions. In long-
term care homes, the module is either not used at all or at least not systematically. A
mix has become established, however, which allocates the 12 care levels or,
respectively, the required time for the service provision as stipulated in KLV303
to the RAI Groups instead of the Resource Utilization Groups.
298
With a view to these two instruments, the Swiss legislator, authorities and expert committees
can resort to mature solutions from abroad for a new definition of long-term care dependency and
the categorisation of the specific need for help and care, cf. inter alia Schaeffer (2004) and Landolt
(2001a).
299
Cf. e.g. Art. 7 and Art. 7a KLV.
300
Cf. Carpenter et al. (1997).
301
E.g. Baur (2005).
302
The Swiss association for domiciliary assistance and care services (Spitex Verband Schweiz)
recommends it as the instrument to be chosen for Spitex (RAI Home Care). As for inpatient long-
term institutions, it is the cantons that decide which instrument is to be used (RAI Nursing Home,
among others).
303
Cf. Art. 7a Para. 3 KLV.
The Swiss Federal Court emphasizes that the Resident Assessment Instrument
(RAI) was of a recommendatory nature with a view to domiciliary care and
particular professions, yet without claiming any normative validity, thus not bind-
ing the Court to any obligations. The latter could, however, consider these recom-
mendations in its decision if they were in line with the interpretation of applicable
legal provisions in that they accommodated and justified the individual case.304 The
RAI can—and should—therefore be consulted for the purpose of long-term care
needs assessments both in health and accident insurance.305
As a basis for tariff-setting, some cantons allot a certain case level to the
Resource Utilization Groups, e.g. reimbursement according to care time spent.306
This makes it a mix between national provisions stipulated by social insurance
legislation and a scientifically developed and internationally established
instrument.
Based on experience gained from other OECD countries, it can be assumed that
in future lump-sum reimbursement systems and other sorts of new financing
methods or reforms in domiciliary and inpatient long-term care will be discussed
in Switzerland.307 Coordination, as of 1 January 2012 listed in the KLV as an
individual benefit, will thus be a core element of integrated care. Lump-sum
reimbursement in spitex facilities can work, as has been shown by a successful
model of the New York Spitex service, one of the biggest Spitex services in the
world, which has developed an insurance model for long-term care provision in
cooperation with the national health insurance for low income population groups
(Medicaid) and elderly persons (Medicare).308
More recent concepts addressing permanent health impairments also integrate
support for self-management among chronically ill persons.309 Thus, long-term care
dependency must not exclusively be assessed from the viewpoint of service provi-
sion through health professionals. Patients on their behalf can also, according to their
capabilities, contribute significantly to the progress of the concept by efficiently
integrating the administration of medication into their daily life. In this context, a
wealth of knowledge and experience has been acquired since the 1980s, making
healthy living and a health-promoting daily routine possible also for chronically ill
persons and enabling them to develop the appurtenant competences. For this
purpose, patient education has been intensively promoted in Switzerland in recent
years,310 very interestingly so also with the active participation of health insurers.311
304
Cf. BGE 136 V 172 E. 4.3.3 and 124 V 351 E. 2e as well as judgment BGer of 21/12/2010
(9C_702/2010) E. 4.2.3.
305
Cf. judgment BGer of 12/07/2013 (8C_1037/2012) E. 5.2.4.
306
Cf. Vettori et al. (2007).
307
Cf. OECD (2013).
308
Cf. Bischofberger (2012c), Johnson and McCarthy (2013).
309
E.g. Kickbusch and Haslbeck (2011).
310
Cf. Haslbeck (2012).
311
See on this cooperation at www.evivo.ch, a programme addressing multiple diseases with a
view to the promotion of self-management in the case of chronic illness.
Caretakers who (have to) provide care to family members in addition to con-
tinuing their gainful activity also require a special form of self-management.312
Until some years ago, Swiss economy and politics almost completely overlooked
the point that work-family reconciliation measures were not only to be directed at
parents with healthy newborns and small children, but also at working persons who
provided long-term care to relatives. So far, Switzerland has not introduced any
comparable statutory provisions regarding the promotion of gainful activity in
combination with the provision of care to relatives such as exists in Germany
(“Familenpflegezeit”, family care time), Austria (“Hospizkarenz”, family hospice
leave), or in Canada and the USA (“compassionate care”).
Companies must, however, within the framework of labour law313 and the Swiss
Code of Obligations314 ensure that free time or days of leave are granted to persons
who provide care to family members. Human resources managers and social
partners have responded relatively quickly to the new issues and challenges for
businesses.315 In order to guarantee a stable working life, it is not only the
employers’ role that is crucial: health care providers, too, play a major role in
order for working persons to be able to pursue their gainful activity without
interruptions, say, in the form of unnecessary inquiries at (or disruptions from)
work. In this respect, well-coordinated solutions on integrated care also contribute
to better social protection or, in other terms, to the sustainable preservation of
employment relationships.316
Another way of making care services provided through family members more
official is to employ the latter through Spitex organisations. This was examined
from the perspective of legal and nursing science not long ago.317 Employment of
family carers is the responsibility of the respective Spitex organisation. Within the
context of cantonal approval, the latter is also in charge of supervising the quality of
care provided. Responses from Spitex organisations and of employed family carers
have been positive so far.318 From an economic point of view it can be argued that
such employment generates additional tax revenue and social insurance
contributions.
On the other hand, additional health insurance costs may be incurred in cases
where services previously delivered voluntarily through family members are now
invoiced by the Spitex organisation. However, the proportion of costs for Spitex
services in relation to the overall expenditure of the Swiss health system amounts to
a mere 2.8%.319 This is unlikely to change significantly even in cases where
312
Cf. Barkholdt and Lasch (2004), Bischofberger et al. (2009, 2013).
313
Cf. Art. 36 Para. 1 ArG.
314
Cf. Art. 329 Para. 3 OR.
315
E.g. Bischofberger and H€ oglinger (2008), Escher Clauss (2011), Leis (2012), Derrer
Balladore (2012).
316
Cf. Bischofberger (2012a, b).
317
Cf. Leu and Bischofberger (2012).
318
Cf. King (2011).
319
Cf. Weiss Zbinden (2011).
employment is specifically selected. It can be assumed, however, that involvement

in long-term care and assistance service provision through family members—
previously mainly women, and mostly unpaid—will decrease due to changing
family structures, geographical mobility and an increased labour market participa-
tion among women.
In order to be able to thoroughly discuss the current practice of the model of
“employment of family members by Spitex organisations”, four aspects must be
examined more closely320:
– the quantitative assessment of employment relationships in Spitex organisations
and of previous experience,
– the option to have caregiver employment credited to a qualification in the
healthcare professions,
– the assessment of experiences from the viewpoint of persons dependent on care
services
– the need for further research in the socio-ethical dimension, as caregiver
employment creates a new category of family members.
A further possibility of how to secure care services in private households is care
migration.321 In Switzerland, a market for social care services has developed in this
field in the past years. Many care migrants (mostly female) come from Central and
Eastern Europe to render care services in Swiss households for a certain period to
persons dependent on assistance and long-term care, often living with them in the
same household. This results in a complex relationship between societal and (socio-
)political framework conditions with a view to this largely uncontrolled market.
Apart from labour law issues it is, above all, questions on how to ensure the quality
of service provision that are of interest for this study. In this regard, Spitex
organisations could be considered suitable for offering advisory or supervisory
services in households where care migrants are employed, thus assuming quality
assurance functions.322
As regards the reimbursement of services provided by (female) care migrants,
the following applies: The search for an assistant in the open labour market is
arranged within the context of invalidity insurance or, respectively, assistance
allowance. The person dependent on care services can employ the (female) care
migrant. The legislator does not prescribe any specific qualifications for the respec-
tive care assistant. However, if care migrants are employed through agencies that
are not approved by the cantons as service providers, no reimbursement through the
320
A project on this is currently conducted by Kalaidos University of Applied Sciences (Kalaidos
Fachhochschule Gesundheit) or, respectively, by Careum Research (Forschungsinstitut Careum
F + E) in collaboration with Spitex K€ oniz in the framework of support measures by means of a KTI
innovation cheque (KTI InnovationsScheck) (see www.careum.ch > Forschung >
Patientensicherheit).
321
Cf. van Holten et al. (2013).
322
Cf. van Holten et al. (2013).
health insurance is possible for any services rendered. Care migrants thus often
perform the same tasks in different households; their services, however, are
unequally reimbursed depending on the insurance coverage of their patient. This
circumstance is also relevant with a view to quality assurance, the latter of which
has been stipulated in KVG. Persons dependent on long-term care and their families
must be informed accordingly on reimbursement options.323
Since the entry into force of the “assistant budget” pilot project on 1 January
2006 it has been possible for caregiving family members to be employed by their
care-dependent relatives at the expense of the invalidity insurance system. Previ-
ously and until 2008, this had only been possible for recipients of supplementary
benefits.324 However, utilisation of the employment option in the context of the
pilot project did not meet the expectations.325 With the introduction of assistance
allowance in the federal law on invalidity insurance (IVG) on 1 January 2012 this
option was cancelled, which means that directly related family members can no
longer be employed as assistants. In 2008, the option of supplementary services in
health insurance [ELKV] was also abolished at federal level.326 The latter had
enabled family members to be employed by their care-dependent relatives. It is
now the cantons that rule on this issue by means of regulations. It remains to be seen
how many persons will resort to services provided under the new cantonal
conditions.
Finally, owing to an initiative of the Swiss Federal Council, a new option in
terms of social policy is being discussed that is based on ‘making provisions for
time” (i.e. a ‘care time bank’—Zeitvorsorge). For this purpose, the Swiss Federal
Social Insurance Office (BSV) commissioned a feasibility study.327 The aim was to
examine to what extent human resources among pensioners can be used directly
after retirement, and whether by means of a care time accumulation system the
overall costs to be borne by the community for assistance and care services in the
home of elderly patients can be contained.
With a view to long-term care provision, results show that there is potential for
time units to be offered on a voluntary basis. In parallel to establishing a care time
accumulation system, professional in-home care and assistance services must also
be expanded, particularly since the benefits catalogue for the provisioning of time
units is intended to play a merely supportive role to back up the delivery of care
services. It must also be pointed out that owing to insufficient data in Switzerland
and abroad, and due to the complex structures of the care time accumulation
323
Cf. Jähnke et al. (2012); see also the guide on the employment of a helper in the home, issued by
the Office for Equality (Fachstelle für Gleichstellung) of the City of Zurich:: http://www.stadt-
zuerich.ch/content/prd/de/index/gleichstellung/themen/erwerbsarbeit/haushalthilfe_im_alter/
publikationen.html – last viewed on 21 June 2013).
324
See on this supra margin No. 146.
325
Cf. Latzel and Andermatt (2008a, b).
326
Art. 13b aELKV provided for the payment of an allowance for costs incurred in the case of
illness and disability for family caregivers and family assistants.
327
Cf. Oesch and Künzi (2008).
system, its feasibility can only be assessed once a pilot project has been launched
and tested. A care time accumulation system is presently being prepared for launch
in the city of St. Gallen.328 Its operative model allows for a maximum of 750 h to be
collected by each person collecting time units. These hours are secured on a long-
term basis in order to guarantee their availability once a person has retired and
needs them. Both service providers and voluntary organisations are involved in a
cooperative way in the structural management of the care time accumulation
system.329
This critical appraisal and the presentation of possible solutions make clear that
the system of long-term care provision for very old persons and persons with
disabilities requires various changes and developments. The legislator would be
well advised to create a coherent and equal compensation system for assistance
services under the responsibility of a social insurance provider in the context of
redesigning helplessness and long-term care allowances. Only this would facilitate
a reasonable insurance system; only thus would today’s incoherently provided
insurance benefits and services 1 day become guarantors for patient autonomy.
Current national and international studies under umbrella terms such as “unpaid
care work” and “long-term care” shall be leading the way in this context.330
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Comparison
Contents
1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 580
1.1 Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 580
1.2 Long-Term Care Dependency As a “Janus-Faced” Social Risk . . . . . . . . . . . . . . . . . . . 581
2 Legal Bases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 582
2.1 Social Protection Against the Risk of Long-Term Care Dependency As
an Independent Legal Basis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 582
2.1.1 Historical Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 582
2.1.2 Independent Legal Protection Within the Context of an Integral System . 582
2.2 Social Security and Long-Term Care Dependency Within the Scope of Health
Care Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 584
2.3 Social Security for Persons Dependent on Long-Term Care via Entitlement
to Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 584
2.4 Social Security for Persons Dependent on Long-Term Care via Entitlement
to Social Assistance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 585
3 Collaboration Among Different Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 587
4 Competences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 587
5 Financing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 589
6 Role of the Private Sector . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 589
7 Safeguarding the Rights of Persons Involved . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 590
8 Freedom of Choice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 593
9 Service Delivery Structures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 594
9.1 Assuring the Necessary Infrastructure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 594
9.2 Professional Versus Informal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 595
9.3 Incentives for Non-Professional Carers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 597
10 Long-Term Care Dependency and Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 598
11 Long-Term Care Dependency and Migration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 599
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 602
H.-J. Reinhard (*)


https://doi.org/10.1007/978-3-319-70081-6_15
580 H.-J. Reinhard
1 Introduction
1.1 Problem
The risk of long-term care dependency is on the increase not only in all countries
included in this comparative study but far beyond.1 Even countries that face severe
financial problems have to find solutions how to deal with long term care.2 This is
not surprising, as the demographic challenges posed by a rapidly ageing population
are common throughout Europe. This does not mean that old age per se automat-
ically leads to long-term care dependency. In fact, many of today’s 80-year-olds are
significantly more agile than their parents and grandparents when they were 60 or
70 years of age. Undisputed, however, is the fact that as a person grows older, he or
she is more likely to require the help of others. Increasing longevity also means an
increase in the duration of help services needed. What is more, medical progress
now enables life-prolonging measures that would, some years ago, not have been a
given or even imaginable. The issue here is not whether these measures are indeed
always beneficial to the actual life quality of the person involved. Discontinuation
of life support measures is very problematic in ethical and legal terms, even in cases
where the person involved has opted for it (e.g. in the context of a living will). It
becomes even more difficult in cases where there are no indications of what the
actual wish of a patient might be once the latter can no longer make a clear
statement. A discontinuation of life support measures might all too easily spark
the suspicion that (unnecessary) costs for complex and expensive long-term care
services might be saved.
A second group of persons dependent on long-term care is often ignored in the
public debate—namely that of younger persons requiring long-term care. The term
‘long-term care dependency’ makes most people think of their ageing parents or
grandparents and the physical or mental decline that comes with old age; yet, they
forget about younger persons who may also be dependent on long-term care. Long-
term care dependency is far from being an issue limited to the elderly, even though
the latter constitute the biggest group in all countries studied. However, illness or
accidents may also play a role in very quickly turning a previously healthy person
into a long-term care recipient. Further, there are children who have suffered from
congenital defects since birth. Medical progress, here too, has opened up possibil-
ities to improve the survival rates in cases of severe diseases or accidents, e.g. in the
field of transplantation medicine. If persons affected by such particular medical
conditions require the help of others, they are hardly ever categorized as dependent
on long-term care, but as persons with disability. In this context, it will be important
to assess to what extent this distinction in wording might have an impact on the
1
For these general aspect see Long-term care – challenges and perspective Poškutė (2017) and
Greve (2017).
2
Tinios (2017).
Comparison 581
legal position of those involved, particularly with regard to entitlements concerning

the type and scope of benefits and services.
1.2 Long-Term Care Dependency As a “Janus-Faced”

Social Risk
Focus of the assessment will be not only on the legal position of persons categorized
as either dependent on long-term care or with disability, but also on the legal status
and on the rights of those who provide the care services. The sudden contingency of
a family member becoming dependent on long-term care marks one of the most
life-changing incidents within a family, and it is not predictable, neither with regard
to its beginning nor to its duration. As a rule, once long-term care is required by a
family member, it is the closer relatives that are expected to act as caregivers—not
only for moral reasons, but also due to obligations derived from family law. This
holds true even more so as most systems examined put very strong emphasis on the
participation of family members in the respective caregiving activities. Usually, the
main burden of long-term care provision to relatives rests with the women of the
family, mostly daughters or daughters-in-law. As such, women in general often do
not have sufficient social protection or work in precarious employment. Partial or
full disintegration from the labour market without compensation of other sorts
would further reinforce their deficient social protection status. It must be assessed,
therefore, how the various legal systems have addressed this problem.
Also with a view to professional caregivers, the special vulnerability of these
persons must be taken into account. Just as with family caregivers, professional
caregivers, too, are mostly women. Apart from the (already existing) gender pay
gap with its financial disadvantages for women, workers in the caring professions
are, in any case, known to work under unfavourable conditions and to be relatively
badly paid by comparison. The question is whether, given the societal necessity for
a sufficient number of caregivers to meet demands, the respective legal systems
could not, by way of improved legal frameworks, eradicate such adverse working
conditions.
In the past years, a new group of vulnerable workers has emerged, namely that of
female migrants who work as caregivers. Long-term care, especially when provided
to persons with a high care dependency level, is very time-consuming and thus also
very costly. In the majority of countries compared, persons dependent on long-term
care or their relatives even have to pay a significant part of the costs for care out of
their own pockets. This promotes the demand for less expensive long-term care
personnel from abroad, who are recruited mainly from the Eastern European
neighbouring countries. Since the accession of those states to the EU the conditions
for accessing the labour market have been relaxed; social protection, however, is in
many cases still known to constitute a grey area which the compared countries deal
with in very different ways.
582 H.-J. Reinhard
2 Legal Bases
2.1 Social Protection Against the Risk of Long-Term Care

Dependency As an Independent Legal Basis
2.1.1 Historical Development
Even though the risk of long-term care dependency is not a new risk—as there have
always been persons dependent on long-term care as a result of old age, illness or
accident—the configuration and structures of protection measures against the risk
of long-term care dependency have only been implemented legally in the past
25–30 years. The Netherlands is generally regarded as the pioneer for establishing
the legal regulations concerning long-term care dependency, and this is due to its
National Act on Exceptional Medical Expenses (Algemene Wet Bijzondere
Ziektekosten—AwbZ) introduced in 1968. AwbZ was, however, intended not as a
law to provide protection against the risk of long-term care dependency, but to
cushion the high costs incurred for long-term care services. The title of the law as
such already points at the fact that it is, in fact, about protection against the risk of
“exceptional medical expenses” rather than about the assessment and classification
of persons dependent on long-term care. This focus only changed in the Netherlands
in 2015, when the Dutch Long-Term Care Act (Wet langdurige zorg—Wlz) came
into effect.3
Germany was the first country to introduce, by way of Social Code Book (SGB)
XI, a legislative framework primarily addressing persons dependent on long-term
care, regulating the way in which their care levels were to be assessed, and granting
them specific entitlements to benefits and services. This was followed, in 1999, by
Luxembourg’s long-term care insurance, which was inspired by German law and
has not been included in the closer examination of this study.4 Outside Europe, after
extensive research of the German model, Japan legally implemented its long-term
care insurance in 2000.5 Another system based on the German example was
introduced in Spain in 2009.
2.1.2 Independent Legal Protection Within the Context of an Integral

System
To the extent evident, the abovementioned legal systems are, to date, the only ones
that have elaborated specific, independent laws concerning protection against the
risk of long-term care dependency. The pre-legal issue is the same in all countries
examined. This, however, has by no means resulted in identical regulations;
3
Cf. Dijkhoff (2017).
4
Kornbeck (1999), pp. 282–284; K€
ostler (1998).
5
Reisach (2000), pp. 110–122.
Comparison 583
instead, different emphases have been put. In the Netherlands, the entire population
is included in the scope of application, and the costs for long-term care are largely
borne by the competent entities. In Germany, the entire population has, in practice,
also been included since the introduction in 2009 of a general, compulsory health
insurance.6 In this respect, it differs from other branches of social insurance which
link entitlements to benefits primarily to gainful employment. However, only part
of the costs is borne by the competent institutions; furthermore, German law puts
great emphasis on including family members in the care provision process. Due to
its small size, Luxembourg focusses on service provision through a limited set of
institutions. Spain, by contrast, prefers regional solutions, even though the basic
provisions have been regulated by way of national law. According to the Spanish
legislator, long-term care provision is primarily the task of the State and not of the
family; it does not always work this way in practice, however. Japanese law only
includes elderly citizens in the scope of application, while the other legal systems
examined include all citizens irrespective of age.
At a closer look we can see, however, that also in the aforementioned legal
systems the independent and specific legal provisions alone do not suffice to offer
adequate protection against the risk of long-term care dependency. This has become
clear in the Netherlands, where—even after the 2015 reform—a close link to the
health care legislation remains. In Germany, long-term care insurance and health
care insurance are formally separated; however, a close reciprocal legal relationship
exists which sometimes makes a clear demarcation between the two systems
difficult. Furthermore, the German example in particular—which claims to be a
universal system for the entire population—shows that special provisions do exist
with a view to particular groups of persons such as victims of work accidents or
crime victims, thus also bringing about different notions of the definition of long-
term care dependency; not to mention the fact that benefits and services, too, vary in
their configuration depending on the case. The provisions governing long-term care
dependency are supplemented by specific regulations aiming at the integration of
persons with disabilities. Long-term care provisions are targeted at the delivery of
services and financial means to secure the physical needs of persons dependent on
long-term care. They do not, however, address their social needs, particularly not in
terms of providing opportunities to participate in society and the working world.
The latter task is regulated via supplementary provisions, such as contained in the
German Social Code Book (SGB) IX or the Spanish Law on the Integration of
Persons with Disabilities (LISMI).
6
§ 193 Versicherungsvertragsgesetz (VVG).
584 H.-J. Reinhard
2.2 Social Security and Long-Term Care Dependency Within

the Scope of Health Care Law
The connection made to health care law makes sense as persons dependent on long-
term care will generally also require medical care. However, it would appear that
only two European countries have made regulations in close association with the
health care system, namely Portugal7 and the United Kingdom,8 with the latter
having made different legal arrangements for the different parts of the country. The
linking of such regulations to the health care benefits delivery system is of advan-
tage in that it thus ensures medical care provision for persons dependent on long-
term care. On the other hand, resources may be misdirected, since medical services
are, as a rule, more costly than long-term care services. As the German example
shows, it was particularly the care provision for “incurable” long-term care patients
that resulted in an excessive use of expensive medical services and thus initiated the
establishment of a separate long-term care insurance system. The linking of care
provision to the health care system does not necessarily imply, however, that long-
term care services must be provided in medical facilities.
2.3 Social Security for Persons Dependent on Long-Term

Care via Entitlement to Social Services
Especially the Nordic countries like Norway and Sweden—but also Finland and
Denmark, which were not included in this study—follow a rather holistic, needs-
based approach. Strict division into separate insurance branches or clearly definable
ranges of duty is not provided for, except with a view to old age insurance, which is
of no purport in this context. Every person with health problems is to receive
adequate support, be it in terms of medical treatment or of needs-based long-term
care provision. The establishment of benefits and services provision in the field of
social services in combination with the obligation taken on by the municipalities to
offer the relevant services furthermore ensures efficient care coverage for persons
dependent on it.
7
Decreto-Lei n. 101/2006 de 6 de Junho, Diário da Republica – I Série-A N. 109, 3856.
8
Comas-Herrera et al. (2010).
Comparison 585
2.4 Social Security for Persons Dependent on Long-Term

Care via Entitlement to Social Assistance
The Central and Eastern European states, by contrast, offer security against the risk
of long-term care dependency mainly via social assistance schemes. Among the
countries studies in this book this includes Poland,9 the Czech Republic and
Hungary.10 However, a close link to the health care system exists. While medical
and long-term care services are covered by the health care system, social assistance
mainly assumes the costs for accommodation and for personal care needs, and sees
to particularly severe cases of disability.
Yet, even the German system with its independent social insurance branch
ultimately resorts to the social assistance scheme, as the latter is to bear a substantial
part of the expenses incurred in the context of long-term care dependency. Due to
the great costs it is, in practice, virtually impossible for persons dependent on long-
term care not to also become dependent on social assistance. Ultimately, only
systems that follow a universal approach and assume the major part of the costs
will have the capacity of relieving dependent persons or their relatives from any
co-payments.
In countries where the right of recourse to co-payments exists and may become
applicable, persons involved and their families face great financial uncertainty. For
usually the regulations governing the recourse modalities are relatively vaguely
defined and therefore do not give persons involved a clear indication of the scope of
their financial liability. This form of legal uncertainty makes the system appear
unfair. The great costs generated by long-term care dependency means a great
financial burden for those involved, as it seriously encroaches upon the income and
assets of the family of a dependent person and may even impact that of the future
generation of grandchildren. If one or both parents become dependent on long-term
care, and if this dependency lasts several months or even years, their children may
have to face expenses of several thousand Euros, i.e. money which they will not
have at their disposal for covering the needs of their own children (namely the
grandchildren of the person(s) dependent on long-term care). Of course, this system
where recourse is claimable under social assistance law also prohibits dependent
persons to leave their assets to family members in terms of an inheritance, as such
assets are to be used up priorly in order to meet care costs.
Further, differing financial capacities among relatives will result in different
demands placed on the individual family members, a fact that will certainly not
contribute to family peace. In Germany, such recourse comes in an even more
extreme form, in that liability can be claimed indirectly via partners from children-
in-law, although the latter are not even liable for maintenance under civil law.
Ultimately, it is a mere matter of chance whether a family’s assets can be saved or
9
For Poland see also Czepulis-Rutkowska (2017).
10
For Hungary see also Gál (2017).
586 H.-J. Reinhard
have to be used up to meet the costs for care. Social assistance systems of the sort
that demand more than a mere financial contribution in the form of co-payments,
i.e. expect full cost coverage from insurees and their children—as is the case with
the Germany system—involve enormous financial redistribution processes within
the population. It is the middle class that is affected the most, as recourse can be
taken to savings or real estate. Poorer population classes do not have sufficient
assets in the first place for them to become liable for recourse claims. As for
wealthier population classes, recourse is taken to savings and assets, but due to
the vast proportions these assets are not depleted. For the wealthier population
classes, partial security via a social insurance scheme—as is common in Ger-
many—rather represents additional, yet not necessary financial relief.
The problem arises from the mere fact that obligations under family law and
security provision under social law are intermingled. If one understands long-term
care dependency as a social risk, security against this risk should also be provided
entirely through social security instruments. Within the scope of social law it would
indeed be acceptable to hold persons dependent on long-term care liable to
recourse. An approach no longer appropriate, however, is that of making financial
demands to their families and to involve them in the liability, thus passing on an
individual social risk—i.e. the occurrence of long-term care dependency—to a
group and enforcing a kind of kin liability. From the point of legal doctrine, too,
this is more than questionable, as an individual risk is partially shifted onto other
individuals or, in extreme cases where the assets of the dependent person have been
depleted, even transferred in its entirety onto others. This is even more doubtful as
legally no obligation exists whatsoever to provide care to family members. Due to
the liability to recourse, however, the children of the dependent person can factually
only opt between personal care provision or loss of income.
This circumstance must be questioned for a yet another reason. As mentioned
before, the health care system and long-term care dependency are two closely
linked items. This becomes clear from the fact that in many countries coverage
for long-term care dependency is provided through the health care system.
European Union law also expresses this ambivalence by assigning long-term care
dependency to illness in terms of Coordination law. The ECJ defines it as long-
lasting or specific illness, an expression which is also used in Dutch legal termi-
nology. In Germany it was also due to certain political contingencies that long-term
care was no longer operated through the health care system but through an inde-
pendently developed scheme. In the health care system it is, however, entirely
uncommon in general for family members to be held liable to recourse for the costs
of health care benefits or services. If any, it is the beneficiary himself who is asked
to contribute financially via co-payments. It is therefore inexplicable why other
rules should apply for the social risk of long-term care dependency.
To the extent evident, it is only the German system that is so radical in holding
family members liable for the costs of their relatives’ long-term care dependency.
This is surprising, in fact, as it is the German long-term care insurance system that
has so often been presented as a flagship model; what is more, its insurees are given
the impression that they are comprehensively insured against all long-term care
contingencies.
Comparison 587
3 Collaboration Among Different Institutions
The variety of security systems in place necessarily implies a collaboration of

different institutions for the provision of long-term care benefits and services.
Such collaboration requires a certain degree of coordination in order to avoid an
overlapping of benefits on the one side, but also to ensure seamless security
provision on the other side. First and foremost, this means collaboration between
the health care system and long-term care provision schemes and concerns, above
all, aids and appliances. The question arises whether the requirement to provide a
wheelchair due to an afflicted leg, for instance, is addressed in terms of a medical
problem or with a view to increased long-term care needs due to reduced mobility?
Are incontinence and the requirement to provide incontinence pads due to bladder
weakness ascribed to a medical problem and thus to be financed by the health care
system, or is it a matter ascribed to the necessity to provide the daily personal
hygiene to a person dependent on long-term care?
Naturally, collisions or overlaps are bound to occur only where different systems
are in operation simultaneously. Systems that follow an integrated approach, such
as those of Norway and Sweden, do not have to deal with any distinction of this sort.
The same holds for systems that exclusively grant cash benefits. Here, the focus is
solely on the necessity for the provision of the respective aid or appliance, but not
on who is to fund such provision. Demarcation problems may also arise in cases
where several simultaneously operating systems follow the same social protection
objectives, such as is the case in Switzerland. This similarly applies to Germany
with a view to the distinction between long-term care dependency due to a work
injury or any other physical damage suffered (e.g. crime victims) and long-term
care dependency due to natural physical decay.
Much less problematic is the distinction issue in systems that distinguish
between health care services and services of a different kind (e.g. provision of
accommodation), such as is the case in Poland, Hungary, the Czech Republic and
Slovenia.
4 Competences
Various configurations exist as to the competence to pass legal regulations in the

field of long-term care. Countries that are legally divided are Belgium11 and the
United Kingdom.12 In these countries, different regulations apply in the various
parts of the country with a view to long-term care benefits and services, and there is
no general framework law with binding specifications. In Italy, the system is legally
divided in that the Autonomous Province of South Tyrol/Region of Trentino-South
11
Willems (2010).
12
Glendinning (2017).
588 H.-J. Reinhard
Tyrol has established a system which differs greatly from those of the other
regions.13 Regarding long-term care services, the other regions put emphasis on
very different aspects, which is why—despite certain guidelines—there is a diverg-
ing range of services in Italy, and they are also financed in very different ways. This
clearly non-uniform system within one and the same country to provide for the
contingencies of long-term care is everything but option-based and prompts the
question of equality of living standards and, in general, of whether the principle of
equality is at all feasible. Austria, some years ago, overcame the previously existing
legal division between the different federal states by way of passing a new national
legislation.
In Spain, on the other hand, a relatively detailed framework law has been passed
which is to be implemented individually by Spain’s autonomous communities. In
this regard there have been complaints that at regional level, legal implementation
is effected with various degrees of intensity, a circumstance which has become
more noticeable due to the country’s general financial crisis. In Switzerland, too,
various cantonal legislative competences have led to differences within the system,
however mainly with a view to the amount granted for cash benefits rather than to
structural differences. In individual cases this might create problems in the case of a
move from one canton to another, thus factually limiting the options of those
involved. France in terms of its function as a centralised State has redeployed a
major proportion of competences regarding the configuration of long-term care
benefits to its regions and departments; however, the latter are obliged to observe
the national specifications. In Poland, Hungary and the Czech Republic, the com-
petence for legislation lies with the national parliaments. Insofar as long-term care
services are provided within the scope of the health care system, the configuration
of these services (or benefits) is the same throughout the country. For accommo-
dation and supplementary services (or benefits), the responsibility lies with the
municipalities. A rural-urban divide can be observed, and this is due to unequal
financial strength and the lack of general specifications.
In the Nordic countries it is generally the municipalities that are responsible for
the provision of support services to persons dependent on long-term care. This often
leads to the circumstance, however, that services may differ greatly in their
configuration as each municipality individually and under its own authority decides
which sort of support services are to be deemed appropriate. In the Netherlands the
2015 law reform also effected a transfer of competences to the municipalities. Only
in Germany are these competences administered centrally. While competences also
lie with the municipalities as regards social assistance, the catalogue of benefits and
services has been specifically defined by Social Code Book (SGB) XI, meaning that
there is no legal leeway whatsoever. It is only with regard to the negotiation of long-
term care levels for the provision of inpatient services that the municipalities have
an impact via the financing modalities; yet, this impact is small as mandatory
requirements are to be met with regard to quality standards. The competence of
13
Hohnerlein (2017); Pavolini et al. (2017).
Comparison 589
the German federal states is basically limited to the planning and co-financing of
infrastructures.
5 Financing
As for financing, all countries compared—with the exception of Germany—finance

their long-term care schemes almost exclusively through taxes. Only Germany
levies social insurance contributions deducted from income in order to finance
long-term care benefits and services. Nonetheless, the tax-financed proportion in
Germany is also considerably high; however, it is hidden in the form of a long-term
care contribution/benefit within the scope of social assistance. France also levies a
specific contribution deducted from income in order to finance its long-term care
schemes; this comparatively small amount does not facilitate comprehensive cost-
coverage, however, and is rather to be considered in terms of a co-payment, such as
is similarly levied in countries like Spain, among others.
One argument for the tax-financed system is that anyone of any age may be
confronted with long-term care dependency, regardless of one’s previous biogra-
phy. This risk is common to both long-term care dependency and illness. Protection
against the risk of illness, too, is increasingly tax-financed in many countries, and
only few countries—such as Germany—base their protection schemes on financing
through social contributions that are predominantly deducted from earned income.
Meanwhile, however, even in countries rooted in the tradition of Bismarck such as
Germany, various regulations have been put in place in order to include not only the
gainfully employed, but the entire population in the protective scope of social
insurance (e.g. via family insurance).
6 Role of the Private Sector
The private sector plays a very heterogeneous role when it comes to service
provision. In some countries, such as Poland, Hungary or the Czech Republic, for
instance, the range of public institutions for service provision seems to be deficient
at times. Even though the possibility exists for private providers to become active,
only few persons dependent on long-term care can actually make use of any such
offers due to the low purchasing power of dependent persons, as the costs are not
covered by the public system. In Spain, there are regulations on which private
providers may offer services as “servicios sociales” in the field of long-term care.
These providers must priorly have concluded the relevant agreements with the
administrative authority, otherwise no costs will be assumed. In Italy private
long-term care service providers seem to be preferred over public providers. In
Portugal, there seems to be a tendency to partly privatize the pubic system.14 In
14
Lopes (2017).
590 H.-J. Reinhard
Germany, private institutions can offer services, but costs are assumed only in cases
where a provision contract has been concluded beforehand. Price competition may
also, to some extent, be initiated among the service providers via such provision
contracts. If no provision contract is concluded, no costs are assumed and the person
dependent on long-term care has to pay for all expenses incurred himself. This
means that, factually, only well-off individuals dependent on long-term care have
the option to choose purely private providers without a valid provision contract.
The Netherlands have, within the context of the latest reform, tried to make their
system more competitive. Accordingly, it should be possible for those involved to
buy the services they need under market conditions. The legislator has, however,
not opted for open competition, but decided to settle for a “regulated competition
model”. Competition is limited by a series of legal regulations in order to guarantee
the protection of the person dependent on long-term care. The plan for the long-
term, however, is to further open up the market to competition after an initial trial
period in order to make the system more efficient.
In Nordic countries like Norway and Sweden, but also in Denmark15 and
Finland,16 private providers have, so far, not played any significant role, as it is
the responsibility of the public sector, particularly of the municipalities, to provide
reliable access to care provision. There, competition can thus, if at all, only take
place at the local level.
The private sector has a particular role in Germany. Here, the private sector is
involved not only in service provision, but also in the financing of services in the
form of private long-term care insurance. Not everyone is legally entitled to have
access to this private long-term care insurance; rather, long-term care insurance is
linked to private mandatory health insurance which, in turn, is only accessible for
specific population groups. Free choice between the public and the private system is
not provided for. Worth mentioning is the fact, however, that this particular role of
the private sector in Germany can only be understood in the historical context. All
other countries are dominated by the public sector, and private financing of long-
term care in those countries only makes sense in the context of supplementary
insurance in order to receive better services. This sort of supplementary private
insurance is meanwhile also promoted through fiscal incentives in Germany.
7 Safeguarding the Rights of Persons Involved
In all countries, persons dependent on long-term care have, on principle, a legal

entitlement to the services they require. In practice, this legal entitlement is granted
in very different ways, however. A problem in many countries is that the existing
institutions do not have sufficient capacities. As regards mobile services with the
15
Greve (2017).
16
Linnosmaa and Nguyen (2017).
Comparison 591
purpose of facilitating long-term care provision at home, it is especially in Poland

and the Czech Republic that there is a large urban-rural divide. Especially in the
countryside and in sparsely populated areas—and this also applies to France and
Germany—it is difficult and costly to establish and maintain an exhaustive system
of outpatient services, particularly if responsibility for these services is not at a
local, but at a regional or even national level. Here, responsibility at the municipal
level, as is the case in Norway and Sweden, and as has been aimed for in the
Netherlands since the reform, may prove to be the better and cheaper solution.
Insufficient capacities have been reported especially from field of semi-inpatient
and inpatient care. Legally, specifications exist in some countries regarding capac-
ity planning in the field of semi-inpatient and inpatient care; however, reality cannot
always keep up with the desired result. Financial straits and building regulations,
but also compliance with minimum standards for the fitting-out of premises, pose
problems regarding the construction and completion of building projects. What is
more, demand for such facilities is predictable to a limited extent only, and this
might mean long waiting lists or patient transfers to facilities that do not conform to
the patient’s wishes.
Persons dependent on long-term care should not only be accommodated ade-
quately, but also provided with qualitative care in an appropriate way. Some
countries have issued very detailed legal specifications regarding the quality of
care provided to persons dependent on it; at least according to the wording of these
specifications, compliance with the latter is to be monitored on a regular basis. In
practice, however, it turns out that the monitoring is deficient at times. Persons
dependent on long-term care and their family members have repeatedly complained
about patients being neglected, a lack of hygiene within the facility and bland food.
Some of these complaints may be affected by subjective impressions, but from time
to time, also official complaints are filed. The most detailed legal provisions on
quality assurance and quality control are probably found in Germany, but here, too,
deficiencies can be found. The current valuation system has proved to be inade-
quate, as its criteria were configured in such a way that the system almost exclu-
sively yielded perfect scores regarding quality, even though there were obvious
deficits. There are plans for the old valuation system to be substituted for a new one
which focuses more on the long-term care needs of persons dependent on care
services.
Qualitative limitations are often the result of insufficient staff management. The
legal provisions can stipulate a particular ratio of staff per patient. In the same way,
specific personal qualifications may be legally stipulated with regard to the training
of care personnel. Ideally, these legal provisions are complied with; however, often
compliance with the stipulated standards fails due to financial constraints. Material
costs (e.g. for meals) only make up a very small part of the overall costs incurred for
long-term care and are practically negligible in the financing. The provision of
long-term care services, however, is very labour-intensive and time-consuming.
Costs for personnel account for nearly 100% of long-term care expenditures. If
costs for personnel are financed from public funds such as taxes, expenditures of
this proportion do not constitute any particular problem, at least as long as the
592 H.-J. Reinhard
general tax revenue is sufficient. If, however, tax revenue decreases, as has hap-
pened in Spain due to the financial crisis, the result may be staff cuts in long-term
care facilities. If part of the costs for long-term care services must be borne from
private funds, or if service providers face tough competition, staff cuts at the cost of
quality and of the rights of persons involved will become more likely. It has been
repeatedly reported, for example, that German long-term care homes hire insuffi-
ciently qualified staff or do not comply with the minimum ratio of staff to patient.
There are legal ways for long-term care patients and their families to notify the
authorities and file a complaint. A judicial dispute would hardly be helpful,
however, as proceedings would take too long and would not immediately improve
the situation of persons dependent on long-term care. The respective supervisory
authority is responsible for remedying the situation. Apart from the fact that the
supervisory authority, too, must be adequately staffed in order to react efficiently,
conflicting interests may arise in this context. On the one hand, provision with long-
term care should be guaranteed in quantitative terms, i.e. enough places should be
available in long-term care facilities; on the other hand, the possibilities to provide
the necessary financial resources are restricted by political directives. In Germany,
for instance, the contribution rate has been fixed by the legislator, and any increase
would require a political decision. This conflict between legal specifications regard-
ing quantity/quality and financial constraints makes it very difficult for the super-
visory authority to implement substantial changes. In extreme cases, facilities are
closed, leaving the question as to which other facilities should then accommodate
these long-term care patients.
As for quality standards, occasionally problems also arise in respect of the
structural requirements of the facilities. After staff costs, it is the costs for invest-
ment in and maintenance of the facilities and equipment that assume a large
financial proportion of the costs for long-term care. In this regard, too, there have
been reports of facilities in poor structural condition. Yet, unlike shortcomings in
staffing, building defects are more likely to be detected. What is more, they do not
affect the rights of persons involved as much as deficits in the provision of personal
long-term care. Furthermore, it is rather uncommon for building defects to consti-
tute a direct health hazard for persons dependent on long-term care, while staff
shortage may indeed have an immediate impact on patient health (e.g. in the context
of preventing bedsores) and may, in very drastic cases, even be lethal.
As long-term care dependency implies a certain degree of helplessness in all
legal systems, persons dependent on long-term care in most cases are not, due to
their situation, able to enforce their rights autonomously. They are dependent on
support from relatives or from persons who can advise them in legal matters. One
issue that trespasses the rights of persons dependent on long-term care that has, so
far, been put under a taboo, is the use of violence—be it through professional care
staff or caregiving relatives. Naturally, the use of violence in this context is, in all
legal systems, punishable at least in terms of bodily harm or maltreatment of
charges; however, a high number of incidents go unreported. Often, those depen-
dent on long-term care cannot articulate themselves, and owing to their old age and
Comparison 593
pre-existing conditions, even physicians do not always recognise the signs of

violence.17
8 Freedom of Choice
Long-term care touches on very personal and intimate areas of life of the person
dependent on long-term care. It is important, therefore, to accommodate the wishes
of persons dependent on long-term care to the greatest extent possible and to offer
them the possibility to choose their desired form of care. In all examined legal
systems, a legal entitlement exists for the respective person to choose between
either outpatient long-term care services provided at home, or services provided in
an inpatient facility. Often, semi-inpatient care is arranged for persons who do not
want to give up their familiar surroundings entirely. In many cases, this legally
established right to free choice cannot be exercised in practice, however, as not all
regions offer the respective services or facilities. As mentioned above, it is partic-
ularly in the countryside that not all services offered are of equally good quality in
all locations, or even accessible in close vicinity to the person’s home.
Persons involved should also have the freedom to choose from a range of service
providers. Whether this is the case depends on the structure of the service provision.
Generally, it can be said that freedom of choice can only develop in those systems
with different service providers that deliberately allow and promote competition,
such as is the case in Germany, for instance, where long-term care insurance only
finances the services, but is not in charge of their provision. In cases where long-
term care protection is regarded as a general task of the State or of the municipality,
the range of service providers is largely predefined; freedom of choice for persons
involved is thus restricted or, at best, only granted in larger municipalities. This is
the case in Spain, the Czech Republic and Poland, as well as in the Nordic countries.
In the Netherlands, limited competition was introduced in order to boost a wider
range of options to choose from. In Switzerland, free choice beyond cantonal
borders is limited due to the different financing systems.
In the context of long-term care provision, not only physical closeness, but also
other personal issues may play a role for those involved, e.g. gender, religion or
sexual orientation. As far as can be discerned, the right to free choice—within the
framework of possibilities actually offered—has been legally consolidated in an
explicit way only in Germany. In other legal systems, however, the individual
conveniences of persons involved should also be respected, if only on the basis of
the general principles of human rights. In some countries (e.g. Germany, Italy),
many facilities are operated by Church-run service providers. For this reason, some
persons dependent on long-term care may have the desire to resort to a service
17
Zentrum für Qualität in der Pflege (2014); Weitere Nachweise zu dieser Thematik http://www.
befund-gewalt.de/Literatur.html#Zn.
594 H.-J. Reinhard
provider that represents their own religious orientation. Conversely, too, in these
times of secularisation some individuals may have the explicit desire to precisely
not be accommodated in a Church-run facility. A relatively new issue refers to the
question of how more recently unfurling religious views (e.g. Islam, Buddhism)
should be addressed legally. Another issue that has, so far, found almost no legal
response is the question of how long-term care should be provided to homosexually
oriented persons who wish their care to be provided by caregivers of their own
gender only. This group of persons has, so far, only had the option of invoking the
general rules on non-discrimination.
9 Service Delivery Structures
9.1 Assuring the Necessary Infrastructure
In the countries compared, the infrastructure necessary for service provision is to be

assured at different administrative levels. In the Nordic countries, the responsibility
for the provision of the service infrastructure lies with the municipalities; the same
applies to the Netherlands with regard to mobile services. In Poland and in the
Czech Republic, the municipalities have a certain co-responsibility as to the
accommodation of the elderly and of persons with disabilities, but in general it is
the next biggest structural unit (i.e. the district) that is responsible. The organisation
of actual long-term care services is the task of the State-operated health care
system. In Spain it is the responsibility of the autonomous communities in cooper-
ation with charity organisations or private institutions to organise mobile care
services. Inpatient facilities are also operated by the autonomous communities,
but not exclusively as the State social insurance also runs facilities. In Italy, it is
generally the regions that are competent for the organisation of care services; the
services as such, however, are usually provided through institutions of civil society.
In France, service provision was legally transferred to the various French depart-
ments. In Germany, it is principally the long-term care insurance in cooperation
with the health funds and the federal states that must see to an appropriate range of
services. It is particularly the federal states that are in charge when it comes to the
building of new inpatient facilities. However, neither the long-term care funds nor
the health funds nor the federal states operate inpatient facilities autonomously.
This, rather, is assumed by private entities that can run these facilities in either a
charitable or a profit-oriented way. The mobile services are not run by the public
sector either, but by private agencies.
It is the responsibility for organising the service provision that governs the legal
relations between the service provider, the beneficiary of services and the funding
institution. In Germany this legal relationship is called the triangular benefit
delivery relationship. A legal relationship exists between the service provider and
the beneficiary of the service, namely the person dependent on long-term care. As a
rule, it constitutes a contractual relationship under civil law. A further legal
Comparison 595
relationship exists between the beneficiary and the funding institution, which in
Germany is the long-term care insurance or social assistance authority respectively.
This legal relationship is allocated the public law. This becomes obvious when legal
problems arise. For instance, the beneficiary must take legal action against the
service provider if the long-term care service is deemed deficient. Conversely, the
service provider must file a complaint against the beneficiary if the latter does not
meet his obligations. The beneficiary must assert direct claims against the funding
institution if the latter does not fulfil its financial obligations. Conversely, the
funding institution must make claims against the beneficiary for any excess pay-
ments made. No direct legal relationship exists between the service provider and the
funding institution, however. A similar legal structure exists in Switzerland, where
the beneficiary also concludes a contractual legal relationship with the service
provider and finances these services with benefits received from public funds.
In other countries, these legal relationships have not yet been legally analysed in
such detail, or are significantly different. Particularly in systems where services are
provided directly by the competent institution (e.g. the national health service), no
such interposition of contractual relationships under civil law is necessary between
the service provider and the beneficiary. On the other hand, a model could be
imagined where the competent institution concludes contractual relationships with
a service provider in order to meet its obligations under public law to the benefi-
ciary. This structure can be observed in Spain, for instance, where agreements
(conciertos) are made with private agencies in order to ensure guaranteed social
service provision.
9.2 Professional Versus Informal Care
Informal care provided by family members plays a role in all countries. This is well
understandable from an interpersonal and emotional standpoint. Informal care
provided by family members differs greatly from country to country as regards
legal configuration and intensity. In the Nordic countries, the provision of long-
term care services is primarily seen as the responsibility of the public sector or,
respectively, the municipalities. The family of the dependent person is not neces-
sarily expected to assume crucial tasks in the provision of long-term care, partic-
ularly not tasks the performance of which usually requires professional training.
Informal care in such cases only involves routine tasks like help with shopping
errands, cooking meals, etc. The Netherlands also pursue an approach according to
which essential long-term care services are not to be provided by the family. In
Poland, the Czech Republic, Hungary and Slovenia, long-term care service pro-
vided by family members carry great weight, as the public infrastructure is rather
deficient. The same applies for Italy where, in the case of long-term care depen-
dency, very intensive use is still made of family relations. According to the
intentions of the legislator, long-term care services in Spain are precisely not to
be provided by family members, in order not to disadvantage women in their
596 H.-J. Reinhard
careers, as it is traditionally women who take care of persons dependent on help

within the family. Despite this intention of the legislator, long-term care is still
provided mainly by family members. In Germany, by contrast, long-term care
provision to persons dependent on it is part of the overall concept of long-term
care insurance. For this reason, there is a comprehensive range of legal provisions
with a view to the provision of care services by family members. In Switzerland, the
respective care provision is governed through the payment of cash benefits. These
benefits are granted only on the condition that the caregiving family member can
evidence a certain degree of qualification for the job.
Informal care by family members is not unproblematic from a legal viewpoint.
Firstly, in fact, in none of the compared countries are family members legally
obliged to provide any long-term care services themselves. At best, there might be
maintenance obligations; these, however, aim at monetary payments. Indirectly,
however, family members may be put under pressure via such monetary mainte-
nance obligations to provide the long-term care services themselves, as otherwise
they may be asked to pay for all or part of the costs for care provided by a
professional service. This type of obligatory co-payment demanded from family
members is mainly found in Germany. In other countries, e.g. Poland, family
members may be held liable to make minor co-payments. Furthermore, legal
problems arise with a view to the actual practice of care provision. Informal care
means that care is provided by non-professionals. Given the sensitive nature of the
work, however, it is not without reason that professional long-term care provision
requires long training and specific qualifications. In informal care, incorrect han-
dling of the patient is a common risk which may lead to physical injuries; under
penal law, such injuries are even considered as bodily injury. The caregiving family
members themselves, too, are often unable to cope with the situation. This may be
due to physical exhaustion (e.g. from lifting the person dependent on care), mental
strain (e.g. caused by aggressive behaviour on the part of dementia patients) or
excessive demands on the carer’s social life (e.g. loss of the possibility to partic-
ipate in social life). In terms of penal law, this may constitute a case of neglect of a
person in need of care.
For as long as long-term care provision by family members is postulated by the
system by design, as is the case in Germany, it is essential that the law provides for
both support measures and quality controls via professional carers. While this is a
first and significant step forward, informal care cannot make up for professional
care in the long term. In the other countries, where informal care by family
members is not postulated by design, but where it occurs nevertheless, such support
and control mechanisms are not enforced by law; this, in turn, increases the risk of
incorrect patient handling. Since long-term care takes place within the private
living environment, a high number of unreported cases is estimated—much as is
the case with violence towards persons dependent on care.
Informal care also involves an increase in migration, particularly among women.
In many families, the family members cannot provide long-term care services
themselves, at least not exclusively, due to work- and family-related limitations.
That is why, in most countries, many families hire immigrants, particularly from
Comparison 597
Central and Eastern European countries like Poland and Romania. For EU citizens
it is easier to be employed due to the free movement of services. Citizens of other
nations, such as persons from the Ukraine or from Latin America, for instance,
often work without any protected residence status and thus also legally tend to end
up in very precarious employment relationships without sufficient protective rights.
Yet, even persons with a legal residence permit often work in unprotected employ-
ment relationships or as freelancers without any protection in terms of labour law
and particularly social security law. The more the family is legally or effectively
involved in the provision of long-term care services, the greater is the extent of the
mentioned kind of long-term care migration, and this is especially the case in
Germany, Italy, Spain, France and Austria. In the Nordic states, this kind of
migration has not yet reached any noteworthy extent; this is due to the approach
of comprehensive service provision by the public sector and, by implication, the
minor issue of care service provision by family members. On the other hand,
migration to financially better-off countries displaces the deficit in care staff to
the countries of origin. There, in turn, it is often family members who (have to)
assume the care responsibilities for their relatives.
In order to improve the situation of foreign care staff, Italy and Spain, as well as
Austria have changed their residence regulations, thus ensuring an improvement in
the legal status of care migrants. Even though it is widely known that regulations
under labour law and social law are commonly contravened, controls in this respect
rarely take place. Legally, this may be due to the fact that in all legal systems, the
right to inviolability of the home is protected by constitutional provisions or even
international norms, and that access for control staff to the home of the person
dependent on long-term care requires special legitimation. Furthermore, also polit-
ically there is only limited interest in more controls, as better working conditions
could not be financed by most family members who resort to care migrants for help.
If it were not for care migrants, many persons dependent on long-term care would
remain unprovided for. The latter would increasingly have to be accommodated in
inpatient facilities, and this would significantly increase the overall costs for the
system.
9.3 Incentives for Non-Professional Carers
Incentives for non-professional carers are only an issue in systems that strongly
count on the involvement of family members in the provision of care services. It is
thus not surprising that, especially in Germany, the legal regulations have been
elaborated in great detail. In principle, they aim at making the informal provision of
care services compatible with employment. In cases where a gainfully active person
provides long-term care services to a dependent relative, changes will inevitably
have to be effected with regard to the employment relationship. Working hours will
either have to be reduced to part-time employment or, in some cases, employment
might even have to be suspended for a specific period of time. This implies a change
598 H.-J. Reinhard
in conditions in terms of both labour law and social insurance law. Any alteration or
flexibilisation of working hours significantly depends on the readiness of the
employer to grant such conditions. On principle, the employer is not obliged to
accommodate any such request. If, however, long-term care provision by a family
member is to be promoted, legal regulations will have to be issued that oblige the
employer to either adjust the working hours of a caregiving employee or grant
him/her temporary leave from work in general.
If social protection is linked to employment, a reduction in working hours will
lead to a lower level of social protection. Complete termination of employment can,
consequently, also lead to exclusion from the social protection scheme. To avoid
this, compensatory norms governed by social security law are required that can
close such coverage gaps.
10 Long-Term Care Dependency and Assessment
The term ‘long-term care dependency” is not clearly defined. Each legal system
uses a different definition of long-term care dependency. Some systems (e.g. the
German one) include deficiencies in the performance of common household chores
(preparing meals, cleaning, heating); other systems have a narrower definition of
long-term care and limit the term to purely physical or psychological deficiencies.
There is agreement as to the notion that a person dependent on long-term care is no
longer capable of autonomously performing certain activities of daily life. In any
case, personal factors such as restricted mobility, difficulties regarding personal
hygiene, eating or taking medication is taken into account in the assessment of the
level of long-term care dependency. Meanwhile, increasing importance is also
being attached to the issue of long-term care dependency in the case of dementia
(e.g. regarding dementia patients who tend to stray).
Assessment of the extent to which a person is dependent on long-term care is
made by trained personnel. Naturally, exact classification according to the specific
level of long-term care dependency is required particularly in systems which grant
graduated cash benefit levels (Germany, Austria, Spain). Here, classification and
the assessment of the level of long-term care dependency are made in accordance
with a detailed point system. This type of classification procedure can, on principle,
also result in legal procedures, as the benefit amount directly depends on the
recognised level of long-term care dependency.
By contrast, in systems that solely base their support on the granting of benefits
in kind (Nordic countries and countries which cover the risk of long-term care
dependency through their national health systems), the level of long-term care
dependency is of no importance. If persons dependent on care are already granted
what they actually need, no specific classification procedure involving long-term
care level assessments will be necessary. In these cases, disputes may at best arise
Comparison 599
with regard to the question as to whether a specific care measure is necessary or not,
and to which extent the person dependent on long-term care might have to make
co-payments.
11 Long-Term Care Dependency and Migration
The fact that there is a variety of concepts governing protection against the risk of
long-term care dependency makes it difficult for migrants to import their accrued
entitlements to another country. Even at the level of European Union law, the
situation has not yielded any satisfactory solutions. In terms of EU coordination
law, long-term care dependency is considered to be dealt with in terms of sickness
benefits,18 with the mention by the European Court of Justice that long-term care
dependency is a particular form of illness,19 as only in the rarest cases an improve-
ment of the condition is effected. The Patient Directive20 expressly states that the
drafting of long-term care benefits and services in another Member State is not
possible.
This might constitute a gap in social protection for persons moving abroad if the
host country provides for lower quality services than the country of origin in the
case of long-term care; this is the case in the southern European countries, for
instance. Gaps in social protection may also occur if minimum insurance periods
are required in order to be entitled to benefits or services, such as is the case in
Germany. Entitlement to long-term care benefits may also, depending on the case,
be either accredited or suspended, which makes sense in terms of the necessity to
eliminate double insurance and overinsurance. At European level, the European
Court of Justice, too, can close social protection gaps and rectify inconsistencies, as
it has done before with a view to German21 and Austrian22 law. However, even the
ECJ cannot, according to applicable law, close all social protection gaps. It indi-
cated that only cash benefits could be exported, but not benefits in kind23; it is
however precisely the latter that are of major significance in the field of long-
term care.
If a person moves to a country other than Switzerland or than a EU or EEA
country, the social protection status against the risk of long-term care is, de facto,
18
Art. 34, Regulation No. 883/2004.
19
ECJ case C-388/09 of 30 June 2011 (Da Silva Martins).
20
Directive 2011/24/EU of the European Parliament and the Council of 9 March 2011 on the
application of patients’ rights in cross-border healthcare, OJ 2011, 88/45.
21
ECJ case C-160/96 of 05 March 1996 (Molenaar), coll. 1998, I-843.
22
ECJ case C-215/99 of 08 March 2001 (Jauch) coll. 2001, I-1902.
23
EJC case C-208/07 of 16 July 2009 (Von Chamier-Glisczinski), coll. 2009. I-6095.
600 H.-J. Reinhard
lost in nearly all cases. Long-term care dependency did not use to be understood as
an independent social risk as it was dealt with mainly by the family. This is also the
reason why it was not included in the list of international standards developed by
the ILO.24 Long-term care dependency cannot automatically be subsumed under
the term “illness” as is done by European coordination law. The benefits or services
“shall be afforded with a view to maintaining, restoring or improving the health of
the person protected and his ability to work and to attend to his personal needs”.25
Fact is, long-term care often involves rehabilitative measures, and in some coun-
tries these are even mandated by law (e.g. in Germany); however, especially in
cases of severe long-term care dependency, such measures will not significantly
improve the state of health of the patient. Thus, the scope of application of the ILO
standard applies to medical treatment, but not to any additional long-term care
measures.
Apart from the fact that even medical treatment provision is insufficient in many
countries, most countries do not offer any—or only very rudimentary—support
with regard to long-term care. Even if benefits or services are provided, persons
who have just moved to the country are often not entitled to make use of them. It is
also peculiar that the applicable social insurance conventions have not laid down
any regulation regarding long-term care benefits. In practice, this affects a lot of
persons who have worked in one country for years, and who have paid taxes and
contributions there, but who then—upon returning to their country of origin—do
not receive the necessary long-term care or have to pay for such services them-
selves. This holds true for Turkish employees,26 employees from the former
Yugoslav republics which did not join the EU, or employees from other
European or non-European countries. In the future, this will increasingly be the
case for asylum seekers and refugees who presently seek protection in Europe. If
they integrate into the labour market and society, and then decide to return home at
a later stage when conditions in their countries of origin have, hopefully, improved,
their legal entitlement to long-term care services is lost in their home countries. Yet
even EU citizenship does not solve the problem, as benefits in kind are, as a rule,
non-exportable.
Meanwhile the Commission has become aware of the problem. On 13 December
2016, the Commission launched a proposal to revise Regulation 883/2004.27 In the
context of this revision, new provisions in an own chapter shall regulate the
24
Convention No. 102 (Social Security Minimum Standards Convention). This conventions
became applicable on 27 April 1955.
25
Art. 10, No. 3, ILO Convention 102.
26
BSG Judgement of 25 February 2015—B 3 P 6/13 R.
27
Proposal for a Regulation of the European Parliament and of the Council amending Regulation
(EC) No 883/2004 on the coordination of social security systems and regulation (EC) No 987/2009
laying down the procedure for implementing Regulation (EC) No 883/2004, COM(2016) 815 final
2016/0397 (COD).
Comparison 601
coordination of long-term care benefits.28 The new provisions are not yet in force
but the consultation process has begun.29
28
Recital 24 is replaced by the following:
(24) Long-term care benefits for insured persons and members of their families need to be
coordinated according to specific rules which, in principle, follow the rules applicable to
sickness benefits, in line with the case law of the Court of Justice. It is also necessary to
provide for specific provisions in case of overlapping of long-term care benefits in kind and
in cash.
After Article 35, the following Chapter is inserted:
CHAPTER 1a
Long-term care benefits
Article 35a
General provisions
1. Without prejudice to the specific provisions of this Chapter, Articles 17 to 32 shall
apply mutatis mutandis to long-term care benefits.
2. The Administrative Commission shall draw up a detailed list of long-term care
benefits which meet the criteria contained in Article 1 (vb) of this Regulation, specifying
which are benefits in kind and which are benefits in cash.
3. By way of derogation from paragraph 1, Member States may grant long-term care
benefits in cash in accordance with the other Chapters of Title III, if the benefit and the
specific conditions to which the benefit is subject are listed in Annex XII and provided that
the outcome of such coordination is at least as favourable for the beneficiaries as if the
benefit was coordinated under this Chapter.
Article 35b
Overlapping of long-term care benefits
1. If a recipient of long-term care benefits in cash granted under the legislation of the
competent Member State receives, at the same time and under this Chapter, long-term care
benefits in kind from the institution of the place of residence or stay in another Member
State, and an institution in the first Member State is also required to reimburse the cost of
these benefits in kind under Article 35c, the general provision on prevention of overlapping
of benefits laid down in Article 10 shall be applicable, with the following restriction only:
the amount of the benefit in cash shall be reduced by the reimbursable amount for the
benefit in kind which is claimable under Article 35c from the institution of the first Member
State.
2. Two or more Member States, or their competent authorities, may agree on other or
supplementary measures which shall not be less favourable for the persons concerned than
the principles laid down in paragraph 1.
Article 35c
Reimbursement between institutions
1. Article 35 shall apply mutatis mutandis to long-term care benefits.
2. If the legislation of a Member State where the competent institution under this
Chapter is situated does not provide for long-term care benefits in kind, the institution
which is or would be competent in that Member State under Chapter 1 for the reimburse-
ment of sickness benefits in kind granted in another Member State shall be deemed to be the
competent one also under Chapter 1a.
29
Cf. E.g. in Germany Bundesarbeitsgemeinschaft der Freien Wohlfahrtspflege (2017).
602 H.-J. Reinhard
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Ulrich

Long-Term Care in Europe

ISBN 978-3-319-70080-9 ISBN 978-3-319-70081-6 (eBook)

Library of Congress Control Number: 2017963650

© Springer International Publishing AG 2018

Printed on acid-free paper

This Springer imprint is published by Springer Nature

Munich, Germany Ulrich Becker

Long Term Care in Europe: An Introduction . . . . . . . . . . . . . . . . . . . . 1

Social Protection Against the Risk of Long-Term Care Dependency

© Springer International Publishing AG 2018 1

2 Specificities of LTC Benefits

2.1 Care, Cure and Disabilities

If a person is not or no longer able to independently perform the activities of daily

Committee of Ministers of the Council of Europe defined dependence as ‘a state in

2.2 LTC Dependency as a New Social Risk?

3 Organisation of LTC Benefits

3.1 Concept of Social Protection

3.2 Systematisation of Social Protection Systems

categorisation of so-called ‘legal families’.36 This is particularly reflected in health

depending on political decisions and societal valuations. A third sub-category

3.3 Mixed Systems and the Need for Coordination

4.1 Professional Care and the ‘Social Delivery Triangle’

Fig. 1 Social Delivery provisioning relation

social benefits relation

Their common basis is a political decision. The decision of a political community

4.2 Non-professional Care

Some of the aforementioned principles also apply to the actions of non-professional

and more people into formal employment relationships,66 reconciliation of work

4.3 Mixed Provision and the Need for Coordination

5 On the Outline of the Project

As far as the state of research is concerned, various publications on LTC benefits in

W.J. Pfeil (*)

© Springer International Publishing AG 2018 19

Long-term care dependency in Austria has been recognised as an independent

“Long-Term Care Agreement”—committing themselves to enact long-term care

compulsory insurance contributions. However, the objectives raised against these

2 Specific Benefit Systems for Persons Dependent

2.1 Long-Term Care Allowance

2.1.1 General Eligibility Requirements

The long-term care allowance according to § 1 BPGG is to cover any increased

reside in another member state.23 For persons permanently residing in another

2.1.2 The Definition of Long-Term Care Dependency

Pursuant to § 2 Para. 1 EinstV, help (“Hilfe”) is defined as a postponable task to be

Table 1 Recipients of Care Allowance and eligibility criteria

2.1.3 Seven Levels of Care Allowance

insurance provider; specific areas of need, however, require a differentiation from

2.1.4 Special Provisions

The abovementioned form of categorisation is mostly described as “function-

2.1.5 Procedure and Granting of Benefits

2.1.6 Competent Funding Entities

2.2 Benefits in Kind

2.2.2 Structural Commonalities

First, it must be noted that at province level, individual descriptions of the

2.3 Other Services and Arrangements

2.3.1 General Issues

It is also mainly the responsibility of the individual provinces to disburse benefits

2.3.2 Protection of Caregivers Under Social Security Law

reduction of a gainful activity subject to mandatory insurance. The privileges

2.3.3 24-Hour Care

3 Fundamental Aspects Regarding an Appraisal

3.1 An Independent Social Risk Covered by Benefits

In Austria, long-term care dependency has been recognised as an independent