Module VII Handout

D-LoT E-Learning Course
MODULE VII
TOWARDS PERSONALISED SERVICES

Contents
LEARNING OUTCOMES: .............................................................................................................. 2
KEY MESSAGES OF THE MODULE ............................................................................................... 2
PERSONALISED SERVICES AND HUMAN RIGHTS ........................................................................ 3
VII.1 Definition of key terms ...................................................................................................... 4
VII.2 Person centred planning .................................................................................................... 8
VII.3 Individual needs assessment for personal assistance ..................................................... 13
VII.4 Individualised funding schemes – direct payments ......................................................... 17
VII.5 Service integration ........................................................................................................... 21
Figure 1.............................................................................................................................. 23
Figure 2: ............................................................................................................................ 24
VII.6 User involvement .......................................................................................................... 24
VII.6.1 Nothing about us, without us.................................................................................... 26
VII.6.2 Co-Production............................................................................................................ 27
BIBLIOGRAPHY/RECOMMENDED TEXTS .................................................................................. 29
Resources:............................................................................................................................. 29
Training material: ................................................................................................................. 29
1
The Disability Leaders of Tomorrow Project
(D LoT) is generously supported by
AUTHOR:
ENIL – European Network on Independent Living with cooperation from InControl and the
following people: ENIL: Jamie Bolling, John Evans, Peter Lambreghts, Lilia Angelova-
Mladenova. InControl: Nic Crosby, Clenton Farquharson, Miro Griffiths
LEARNING OUTCOMES:
A. (Knowledge) By the end of the course, participants will be able to recall:
a. Personalized services according to the human rights approach and the social
model of disability.
b. The key principles of person centred planning.
c. The importance of individualised funding schemes;
d. How to involve users in service delivery and design in order to fulfil the United
Nations Convention On The Rights Of Persons With Disabilities (UN CRPD)
B. (Skills) By the end of the course, students will be able to:

a. Recognize what services need to be transformed in order to implement article
19 of the UN CRPD
b. Contribute to person centred planning processes
c. Organise and/or carry out an assessment of the needs of personal assistance
C. (Attitudes) By the end of the course, students will:

a. Principles of Independent Living, including choice and control of users.
b. Personalised services as contributing to full participation.
c. The importance of user involvement for the provision of personalised services
and the CRPD implementation
KEY MESSAGES OF THE MODULE

 Services for disabled people should be aligned with the UN CRPD Article 19.
 Service providers should support individuals on the basis of personal needs, choices
and aspirations.
2
 Personalized services should empower the user.
 Service providers should be drivers for inclusive societies and bridge-builders towards
mainstream services.
 Service providers should provide demand-steered support services, financed through
direct payments and personal budgets, instead of support packages.
 “Nothing about us without us” – means full participation of disabled people in the
creation, delivery and evaluation of services
PERSONALISED SERVICES AND HUMAN RIGHTS

The basis for this module is Article 19 of the UN Convention on the Rights of Persons with
Disabilities – Living Independently and Being Included in the Community (see the box below).
Article 19 underlines the importance of having a range of personalised services responsive to
the needs of disabled people. Disabled people should have access to adequate, good quality
and freely chosen personalised support for independent living regardless of the type of living
arrangement. These services should be so designed as to support community engagement
and inclusion.
Article 19 - Living independently and being included in the community
States Parties to the present Convention recognize the equal right of all persons with
disabilities to live in the community, with choices equal to others, and shall take effective and
appropriate measures to facilitate full enjoyment by persons with disabilities of this right and
their full inclusion and participation in the community, including by ensuring that:
i. Persons with disabilities have the opportunity to choose their place of residence and
where and with whom they live on an equal basis with others and are not obliged to
live in a particular living arrangement;
ii. Persons with disabilities have access to a range of in-home, residential and other
community support services, including personal assistance necessary to support living
3
and inclusion in the community, and to prevent isolation or segregation from the
community;
iii. Community services and facilities for the general population are available on an equal
basis to persons with disabilities and are responsive to their needs.
The Independent Living movement pioneered the development of personalized services with
pilot projects on personal assistance that later evolved into permanent services. Personal
assistance in Sweden, the UK and other countries has allowed disabled people to take
control of their services and their lives. With personalized funding users were able to
organise services based on their individual needs and preferences and to engage in
meaningful participation in the community.
VII.1 Definition of key terms

Some of the key terms include: living independently, inclusion, disability, individual needs,
needs assessment, personalized services and personal assistance.
Living independently
The Report of the Office of the United Nations High Commissioner for Human Rights on the
rights of persons with disabilities to live independently and be included in the community1
provides a comprehensive definition of independent living based on the UN CRPD:
“Persons with disabilities are often presumed to be unable to live independently. That
presumption is based on misconceptions, including that they lack the ability to make sound
decisions for themselves and that, therefore, society needs to protect them. This approach,
1
Report of the Office of the United Nations High Commissioner for Human Rights on the rights of persons with
disabilities to live independently and be included in the community
4
practised in many countries for a long time, has deprived persons with disabilities of the
opportunity to choose where and with whom to live and to determine their own future.
In article 19 of the Convention on the Rights of Persons with Disabilities, the States parties to
the Convention recognized the equal right of all persons with disabilities to live independently
and be included in the community, with choices equal to others. The foundation of that right
is the core human rights principle that all humans are born equal in dignity and rights, and
that all life is of equal worth. On those grounds, persons with disabilities have claimed the
right to participate in all areas of mainstream community living, arguing that the capacity of
all individuals to make choices in that regard must be acknowledged and enabled. Knowing
their own needs best; persons with disabilities have sought control over options to choose,
requesting that community services be made available to them on an equal basis with others.
That approach has gradually been introduced in the laws and policies of some countries. […]
“Living independently does not mean living alone or in isolation. Rather, it means exercising
freedom of choice and control over decisions affecting one’s life with the same level of
independence and interdependence within society on an equal basis with others.
Consequently, article 19 refers to “living independently and being included in the community”
as one right, where autonomy and inclusion are mutually reinforcing and jointly avoid
segregation.
Inclusion
The European Commission defines “active inclusion” to mean “enabling every citizen,
notably the most disadvantaged, to fully participate in society, including having a job.” 2
Disability
According to the UN CRPD “persons with disabilities include those who have long-term
physical, mental, intellectual or sensory impairments which in interaction with various
2
European Commission website: Active Inclusion definition
5
barriers may hinder their full and effective participation in society on an equal basis with
others”. Thus the Convention underlines the key role of environmental barriers (social,
economic, political and cultural) in the construction of disability. Disability is not a
characteristic of the individual; it is a social construction.
Individual needs
There are different types of needs, e.g. physical, emotional, social, and intellectual needs.
For the purpose of this training it is important to highlight that needs vary from one person
to another even if persons have the same impairment. No two people are completely alike
and have the exact same aspirations or needs. Needs vary depending on who a person is, the
person’s life story, the person’s preferences, what a person wants to do, if a person studies,
works, has a family etc. Needs are dynamic and change during time.
Needs Assessment
There are numerous tools developed to facilitate the process of needs assessment. They can
be based on a medical or social model of disability. The former focuses on individual
impairments and deficiencies, while the latter – on environmental barriers. People with
disabilities are confronted with needs assessments by administrations to have access to, or
the right on, certain benefits, budgets, or services. These needs assessments usually are still
very much based on the medical model, focusing on impairment typology and
categorisation. As authorities often require needs assessments they should align with the
nothing-about-us-without-us-principle. This means that they should be designed and
conducted with the full involvement and in co-production with the disabled persons
undergoing the assessments. Examples of this type of assessment can be found in personal
future planning, peer counselling and training sessions and other methodologies aiming for
empowerment and self-determination.
Personalised services
When looking at services for disabled people, personalized services should be seen from the
user perspective. It is about respecting people and disability rights. Being in need of services
6
the person will not live the same life when needs are not or are insufficiently met and do not
allow for inclusion in the society. Only personalised services, tailored to individual needs,
choices and aspirations, can enable full participation in the community and the possibility to
overcome barriers.
Personal assistance
The European Network on Independent Living defines Personal assistance (PA) as a “tool
which allows for Independent Living. PA is purchased through earmarked cash allocations for
disabled people, the purpose of which is to pay for any assistance needed. PA should be
provided on the basis of an individual needs assessment and depending on the life situation
of each individual. The rates allocated for personal assistance to disabled people need to be
in line with the current salary rates in each country. As disabled people, we must have the
right to recruit, train and manage our assistants with adequate support if we choose, and we
should be the ones that choose the employment model which is most suitable for our needs.
PA allocations must cover the salaries of personal assistants and other performance costs,
such as all contributions due by the employer, administration costs and peer support for the
person who needs assistance. 3“
PA as a concept and as a practice was invented and developed by disabled people who
pioneered the Independent Living Movement. It offers a real and valid alternative of
institutionalisation and dependency. PA is not just one-on-one support. In order to call
support PA, there are certain conditions: the disabled person can decide WHO the personal
assistant is, WHAT the assistant actually does for him/her, and HOW this work is done. The
disabled person also decides WHEN and WHERE the support takes place. A good personal
match and clear agreements and dialogue between the disabled person and the personal
assistant are of crucial importance.
3
Link to The European Network on Independent Living definiotion of Personal assistance
7
VII.2 Person centred planning
Originating with Wolf Wolfensberger, person centred planning has its roots in the
normalisation and Independent Living movements. It is grounded in the social model of
disability. Person centred planning was developed because disabled people often find it
difficult to get the kinds of basic services, opportunities and experiences most people take
for granted – and even when they do, they frequently find they are required to somehow fit
into someone else’s idea of what that service, opportunity or experience should be like and
how they should act, think or feel in relation to it4.
Early person centred approaches, introduced by John O’Brien and his wife Connie Lyle
O’Brien in the 1970’s, included the following perspectives: 5
 Alternatives to institutional care being introduced for people with learning

disabilities.
 The social model, where people were not being defined only by their illness or
impairment, was coming to the forefront.
 Many of the assumptions made about people with mental health issues were being
confronted to include needs and environment.
John O’Brien has driven person centred planning since the mid 1980’s with the cornerstone
being putting the person at the centre.
4
Nirje, B. (1969). The normalization principle and its human management implications. In R.
Kugel and W. Wolfensberger, eds. Changing patterns in residential services for the mentally
retarded. Washington, DC: President’s Committee on Mental Retardation.
5
Howell, D. and Sanderson, H. (2004) ‘Person-centred planning in its strategic context: reframing the Mansell
and Beadle-Brown critique’, Journal of Applied Research in Intellectual Disabilities, Vol. 17, No. 1, pp. 17–22;
Routledge, M. and Gitsham, N. (2004) ‘Putting person-centred planning in its proper place?’, Learning Disability
Review, Vol. 9, No. 3, pp. 21–6; John O’Brien, Reference: Lyle O'Brien, C., & O'Brien, J. (2002). The origins of
person-centered planning: A community of practice perspective. In S. Holburn & P Vietze (Eds.), Research and
practice in person-centered planning. Baltimore: Paul H. Brookes Publishing Co.
8
‘‘Person centred planning begins when people decide to listen carefully and in ways that can
strengthen the voice of people who have been or are at risk of being silenced’.6
Person centred planning is not simply a collection of new techniques for individual planning
to replace previous approaches. It is based on new ways of seeing and working with disabled
people, or people who need care and support and fundamentally it’s about sharing power
and community inclusion’’7.
The core values and principles of successful person centred planning include the following8:
 Individuality
 Independence
 Rights
 Respect
 Choice
 Dignity
 Privacy
 Partnership (known as Co-production)
A core element of person centred planning is ensuring that individuals can enjoy their rights
and have a good standard of life. Having a good life means different things to different
people. It includes joy and happiness, health and wellbeing, hopes and dreams, meaningful
6
O'Brien, J. and Lyle O'Brien, C. 1988. A Little Book About Person Centred Planning. Inclusion Press, Toronto
7 idem.
8 Howell, D. and Sanderson, H. (2004) ‘Person-centred planning in its strategic context: reframing the Mansell
and Beadle-Brown critique’, Journal of Applied Research in Intellectual Disabilities, Vol. 17, No. 1, pp. 17–22;
Routledge, M. and Gitsham, N. (2004) ‘Putting person-centred planning in its proper place?’, Learning Disability
Review, Vol. 9, No. 3, pp. 21–6
9
activities, intimate relationships with family and friends, having a home, transportation,
work, money, and the ability to contribute to family and community.9
A good life requires following the above person-centred principles in the planning process,
respecting individual choices (listening) and relationships (community):
 Listening: “I am listened to.” “I have a voice.” “I listen to others.” Listening and

responding to individual choices and descriptions of a good life.
 Community (social connections): “I have friends and family that I see often.” “I am
part of my community.” “I have found groups, organisations’ and social activities that
interest me.”
Relationships with families, friends, and people in the community are very important and
need to be at the centre of planning.
Real person centred planning allows for self-direction, personal choice and supported
control10. The person will be able to make I statements such as the following: “I have
choices.” “I am responsible for my choices.” “I am respected.” Talents and strengths of the
individual are acknowledged so that the person will be able to say: “I am able to contribute
to family and community”; “I learn new things”. The experiences, talents, and contributions
of individuals, families, and communities are strengthened and supported through the
model.
Responsibility will be emphasized: “I am responsible for my choices.” “I receive quality

support.” The provision of services must allow for individuals to shoulder responsibility and
9
Link to: Virginia Person-Centered Practices Leadership Team (2008) Virginia’s Principles of Person Centred
Practices.
10
Putting People First: A shared vision and commitment to the transformation of Adult Social Care (2007),
Department of Health; Valuing People Now: a new three-year strategy for people with learning disabilities
(2009), DH; Valuing Employment Now: real jobs for people with Learning disabilities (June 2009), DH.
10
risks as anyone does in an ordinary life. Shared responsibility needs to balance individual life
patterns allowing people to make their own mistakes11.
Rights, responsibility, equality and diversity must be respected in person centred planning12.
Conflicts may arise from differences in routine or ritual between the professional and the
disabled person but the disabled person’s interests and culture need to be respected. It is
important to find a balance to solve conflicts still prioritizing individual freedom and self-
determination and making sure the individual accesses the needed services. The individual’s
rights and responsibility are to be prioritized in service provision even if their desires or
behaviour go against staff’s beliefs or acceptance. Examples of areas where conflict may
arise are:
 The owning of pets;

 Daily routines and rituals, such as eating certain foods or listening to certain music;
 Religious or cultural differences including, for example, not wanting to shake hands
or looking someone in the eyes;
 Sexual interests;
 Being able to buy alcohol, cigarettes or other products and things considered
immoral by someone else;
 Interests and hobbies, such as going to a campaign, demonstration, football game,
fishing or the likes if the service provider does not share the same interest.
In person centred planning it is important to find out how a person wants to live their life
(what are their aspirations) and what is needed to achieve this. Instead of providing one-
size-fits-all solutions, service providers need to ask the individual what services would be
needed. The following two questions are important:
11
Link to Make it Real – Make it Real “I” statements.
12
UN Declaration on the Right and Responsibility of Individuals, Groups and Organs of Society to Promote and
Protect Universally Recognized Human Rights and Fundamental Freedoms
11
 What is working for you?
 What is not working for you?
Person centred planning has particular relevance to service providers as it is based on the
sharing of power between the people who use services (disabled people) and the service
provider. Involvement of people in what matters most to service providers makes this a
delicate situation. How service providers address the issue of person centred thinking,
behaviour and attitudes within the planning process will have a major impact on the users of
services. Training for a cultural shift from institutional care to community-based services is
indispensable13.
The failure to work with people who use services (disabled people) and families goes against
the core values and the fundamental principles of person centred planning. To achieve the
transition and cultural change in service provision person centred planning is a key element.
The planning process should be considered as a way of keeping the person at the centre,
whilst remembering that having meetings, involving the person and making the plan is not
the outcome. The outcome is to help the person to get a better life on her or his own terms.
Service Providers need to remember: “It ain’t what we do it’s the way that we do it!”
A powerful tool for services providers is the '4 plus 1 questions’ person-centred thinking tool
that can be used in meetings or reviews, or to look at a particular aspect of someone’s life. 14
It focuses discussion on four main questions:
1) What have you tried?

2) What have you learned?
3) What are you pleased about?
4) What are you concerned about?
13
Website about personalised care & support planning
14
Helens Anderson Associates website
12
The answers to these questions lead to the ‘plus 1′ question – based on what we know, what
should be done next? It is a quick way to work out better ways of supporting people and
working together.
There are seven questions that those supporting disabled people should be able to answer:
1) What is important to the person?

2) What is important for the person?
3) Is important for being addressed in the context of what is important to?
4) Is there a good balance between important to and important for?
5) What does the person want to learn; what else do we need to learn?
6) What needs to stay the same be maintained or enhanced?
7) What needs to change?15
VII.3 Individual needs assessment for personal assistance

Methods are many for judging needs of a disabled person and the level of the services
required. Some are rather widespread as a tool used by service providers or government
administrators and are scientifically validated. Examples of such tools are the Support
Intensity Scale (SIS)16 or the Katz Scale17.
But the choice narrows when considering assessment for personalized services based on the
individual’s unique needs and aspirations. The types of services are also many but the
discussion here is narrowed by considering the rights that are to be ensured through the UN
CRPD and Article 19 paragraph b and narrowed further by working with the service of
personal assistance.
15
7 Questions that Those Who Support People with Disabilities Should Be Able to Answer, Michael W. Smull
June 2001
16
Link to the Supports Intensity Scale on the website of the American Association of Intellectual Developmental
Disabilities
17
Link to Assessing Self-maintenance: Activities of Daily Living, Mobility, and Instrumental Activities of Daily
Living
13
ENIL promotes services based on the Independent Living ideology where a great emphasis is
put on expertise by experience18. Classical assessment tools such as the SIS and the Katz
scale start from the perspective of the professional and don’t fully include expertise by
experience and are focused rather on daily functioning support instead of Independent
Living. Already as early as 1991 disabled people gathered to promote policy ensuring full
participation and personal assistance recognizing the expertise from experience:
Recognizing our unique expertise derived from our experience, we are taking the initiative in
the development of policies that directly affect all people with disabilities. People with
disabilities are entitled to be enabled to achieve the highest possible level of personal
functioning and independence through appropriate education, health care, social services
and assistive technology, including, as necessary, the assistance of other people.19
The early recognition of expertise from experience in the development of policy and
services, such as personal assistance for the highest level of functioning, is mirrored in the
UN CRPD and paragraph “b” of article 19 as earlier citied in this paper.
In 2004 a project was carried out, called The European Center for Excellence in Personal
Assistance, ECEPA (www.ecepa.org). A result of this project was a policy proposal for
personal assistance. The project consisted of eight European countries and the experts were
all themselves users of personal assistance. Adolf Ratzka has written an article on the project
that was consulted for the description of the need assessment for this paper.20
In this model policy there is the following account on needs assessment:
18
Resolutions on Personal Assistance Services, Independent Living Institute website
19
Idem
20
Model National Personal Assistance Policy, Independent Living Institute website
14
“In needs assessment the amount of personal assistance is determined which enables
assistance users, in combination with the use of assistive technology, adaptation of their
living and working environment and barrier-free infrastructure planning in the community, to
utilize the same options and opportunities which they would have had without their
disability.
Need assessment takes into account

 The whole life situation enabling assistance users to fulfil the role they would have
had without their disability, in family, neighbourhood and society with all resulting
privileges and responsibilities including the culturally customary division of work
within the family, care of small children, aging parents, household and property,
 Need of assistance at the work place, while attending educational institutions from
kindergarten through university, during leisure time, outside the home, on travel and
abroad,
 All, not only one or several, areas of activity in one’s life,
 The need, if applicable, of experienced and specialized assistants,
 The need of third persons for supporting assistance users who, due to a cognitive or
psychosocial impairment, need support in dealing with service providers and
assistants,
 Activities for the maintenance of one’s health and well-being such as self-care or
physical exercise. Assistants can perform tasks which normally non-disabled persons,
after instruction by medical staff if deemed necessary, would carry out by themselves.
In the case of children, the policy covers assistance needs over and above the parental
responsibility that would apply in the case of a non-disabled child.
The assessment does not take into account the funding body’s financial situation.
15
Assessment is conducted in the form of a dialog between the individual assistance user aided,
if desired by the individual, by person(s) of his or her choice and a representative of the
funding agency. Individuals who work for or are associated with service providers do not
carry out assessments.
The need of personal assistance is expressed in the average number of assistance hours per
month that a person needs and not in terms of one of several need categories.
In assessing needs care is taken to avoid differential treatment of people with certain types
of disabilities, of women, old persons, persons of different ethnic origin, religious belief or
sexual orientation.
Assistance needs, in terms of the average number of hours per month, are reassessed
periodically, at intervals of two years or more or at any time when requested by the
assistance user due to changing needs, for example, changes in one’s impairment, vocational
career, the transition from parental home or residential institution to living in the
community, the birth of one’s child, etc.”
The user should be aware of how to assess his/her own needs in order to be ready for the
negotiation with the social worker. There are guides that inform disabled people on applying
for services21. Many people having lived overprotected lives may need peer support to
empower them to see themselves as living full lives with responsibility.
To summarize, assessment of needs is to be individualized, based on life styles, wishes and

dreams and not impairments. Impairments can be compared only to a certain extent; it is
the life styles and conditions that vary between people and make needs differ. The personal
assistance is to allow for a person to be able to make choices and to fulfil his/her life project.
21
What do I want to do? a DIY guide to self-assessment for Disabled people, Independent Living Institute
website
16
VII.4 Individualised funding schemes – direct payments
Direct payments are part of an ever-unfolding history and development of Independent
Living. Independent living was established in the UK, Sweden, Norway and other European
countries in the early 1980s as a way of giving disabled people more control and choice over
their lives.22 This marked a revolution in the way social care was provided. Until then,
support for disabled individuals was only provided directly through social services. The
introduction of Independent Living schemes paved the way for self-directed and self-
managed individual lifestyles.
The Swedish disability reform legislation LSS came into effect in January 1994.23 This
legislation was the first legislation making it a right to have personal assistance and allowed
for direct payments to disabled persons with high-level needs. The direct funding was and is
based on hours of assistance needed for one week. Funding can be administrated through
private companies, public companies, municipalities or assistant cooperatives with the
choice being left to the user of the personal assistance.
The legality of providing funding for an individual to run his/her own scheme remained
disputable in the UK in the 1980s. This was because under the existing legislation of the time
the law specified that an individual could not receive cash but only service24. The innovative
authorities introducing Independent Living did so through a loophole in the law by paying
the money via a third party, e.g. charity or voluntary organisation.
This situation remained until 1996 when the legislation was reformed with the introduction
of the Direct Payments Act in 199625. This legislation was one of the first in Europe along
with the Swedish legislation. The legislation made a big difference, a law enabling all local
authorities to provide direct payments as an option in service provision.
22
John Evans, The Independent Living Movement in the UK, 2003
23
Link to the Swedish disability reform legislation LSS in Swedish language
24
National Assistance Act UK 1948
25
Community Care (Direct Payments) Act 1996
17
Currently in England and Scotland funding for social care support for disabled people is
through a personal budget.26 This is the default approach for adults and is being gradually
increased for services across social care for disabled children and young people.
Since 2009 there has been an on-going work to pilot and introduce personal health budgets
for people with long-term health conditions and complex needs through what is called
‘continuing health care funding’. In 2014 legislation was introduced in order to make
personal health budgets available through a direct payment.27 This has been an exciting
development which opens more doors to service users. Prior to this, it was not possible
through the continuing health care funding system. This meant that there were a number of
restrictions, due to this being managed by health care and not social care. Health care
professionals can still be much more dominated by the medical model approach instead of
the social model of disability. This has been the tension in being able to fully realise the
Independent Living principles of autonomy and control through personal health budgets.
Since the introduction from the National Health Service in England of the new regulations
and guidance allowing direct payments to be used for personal health budgets, there has
been a slow increase throughout England and Wales in their use. This has seen a transition
of a number of direct payments users moving on to personal health budgets. However,
despite certain restrictions, it is still encouraging as it provides another option for people to
live independently organising their own care and support.
In both England and Scotland, although there are differences in the sources of funding, the
focus of the whole approach is ‘self-directed support’; children with their families, young
people and adults being able to direct their support through taking control over how the
funding is managed and used.
26
Personal Budgets Introduction
27
Guidance on Direct Payments for Health Care: Understanding the Regulations, 2014
18
The funding situation of direct payments through either a personal budget or a personal
health budget is obviously different. People receiving their direct payments through social
care will have a social care assessment along with their budget payment. Those receiving a
personal health budget will be assessed and receive their money via the health system’s
continuing health care funding scheme. These assessments will be very different in their
methods and approach, but the intention is to have the same outcome.
Some people in England also receive a joint personal budget. This means it is part social care
funded and part health care funded. Simon Stevens, Chief Executive of NHS England, has
publicly stated that he would like to see this develop more in the future28.
In both England and Scotland there are three ways a personal or individual budget can be
managed:
 as an organised service, where the management of the budget is held by the public
body and used in ways agreed with the person who needs support
 as a provider managed budget, often called an ‘individual service fund’ where the
provider manages the funding and the support on behalf of the child, family, young
person or adult
 as a direct payment, where the family, young person or adult takes responsibility for
managing their funding themselves
People can choose to have a mix of the three options above.
In both countries there is a commitment to making an indicative allocation of funding prior

to completing the planning process. This is perhaps one of the most important parts of the
self-directed support approach, i.e. giving people a rough estimate of the funding available
as a personal budget and thus enabling them and those helping them to think best about
support, who provides it, when and where.
28
Simon Stevens, NHS Confederation Annual Conference Speech, 2014,
https://www.england.nhs.uk/2014/06/04/simon-stevens-speech-confed/
19
The key legislation in Scotland is the ‘Self-directed Support’ Act 2013 that covers support to
children, young people and adults29.
In England there are two key pieces of legislation:

 The Children and Families Act 2014 which sets out the right to request a personal
budget for families as part of their child having an Education Health and Care Plan 30.
 The Care Act 2014 which sets the right to a personal budget in law for all those
eligible to receive social care funding31.
The new Care Act introduced in England and Wales in April 2015 supports the spirit and
further development of personal budgets, as well as personal health budgets and joint
budgets. This legislation was part of a comprehensive reform incorporating appropriate
parts of previous social care and disability law.
It is also interesting that the Care Act is the first piece of legislation that encourages co-
production and fully embodies the principles of independent living in terms of control and
the direct involvement of the individual in the process.
The Care Act 2014 Statutory Guidance provides a definition of co-production as:
“Local authorities should, where possible, actively promote participation in providing

interventions that are co-produced with individuals, families, friends, carers and the
community. ‘Co-production’ is when an individual influences the support and services
received, or when groups of people get together to influence the way that services are
designed, commissioned and delivered.”32
29
Self-directed Support Act Scotland 2013
30
Children and Families Act England 2014
31
Care Act 2014, http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htm
32
Care Act 2014 Statutory Guidance
20
VII.5 Service integration
In the medical model support to disabled people was supply-driven. Service providers were
licensed and funded per ‘place’, ‘bed’ or ‘session’, to deliver a pre-described care package.
The focus was on professionalization and management of the service. Quality of the service
was measured on formal indicators and protocols rather than on the actual outcome for the
service user. This results in disabled people having to adapt their choices and life style to the
service provision, narrowing their freedom and self-determination, leading them to
institutionalisation33.
Service integration is an important process in realizing the human rights based service
provision and in implementing the UN CRPD article 19. The switch to demand-driven
support, really steered by the user, needs to be made to ensure the best outcome, being
that support given is that which is actually asked and needed instead of delivering what is
assumed to be necessary. Specialised services need to adapt to individual needs and
preferences of the user in function of participation and living independently in the society.
At the same time services for the general public, need to become more inclusive and thus
accessible and useable for disabled people.
It is evident that for successful service integration a change of the ‘old’ views and approach
towards disabled people needs to happen as well as an adaptation of the existing laws,
regulations and funding mechanisms. Service providers can play a key role in this process.
They can impact policy innovation as important stakeholders and experts on disability
support. They can also give input to support successful transition of support systems,
through co-production with the service users.
The challenge when services start to integrate structures, policies and funding is that sight is
lost on the reason for doing so, i.e. improving the support available to those who need it.
33
User control over services as a precondition for self-determination, Copenhagen, October 31-November 1,
2002 Adolf D. Ratzka, Ph.D.
21
Services usually have very complicated structures, with different departments, different
funding streams, eligibility and approaches to working with people who need support.
Service integration can be jeopardized through the design if new complicated structures and
processes. This needs to be avoided by aiming for maximal transparency and by
transforming the services in co-production with the service users.
Another, probably most important, role of service providers regarding service integration is
situated on the individual level. Some disabled persons, especially when they are fully
informed on their rights and empowered by peer support, personal assistance and a
personal network are perfectly able to participate and live independently in society. Others
might need the support of a service that occasionally or even continuously cooperates with
him/her and the family to make sure all support needs are fulfilled. This can be seen as the
realization of the outcome of a person centred planning process. It is about integrating
available existing formal and informal support options that can be found within the family, in
the local community or elsewhere thinking further than the traditional disability specific
services. Key parts of an integrated approach to support34 are illustrated below in figure 1.
34A Life not a Service and accompanying materials - http://www.in-control.org.uk/news/in-control-

news/a-life-not-a-service.aspx
22
Figure 1
Service providers should evolve more and more to deliver case management services that do
not take over the control but think and act on the side and in the interest of the disabled
person. The focus should be on informing about rights, possibilities and opportunities,
identifying and overcoming barriers, building bridges to the community and mainstream
services including outreach of knowledge. This support should not be obligatory but
available as frequent and intensive as needed and could be especially of use at certain
‘turning points’ in life, such as when starting with studies, a job, moving to a new place of
residence, family enlargement, etc.
All activity should centre on the person, the child and those closest to this person using
services. Planning should be on the agreement of ‘whole life’ outcomes, like ‘living
independently’, ‘getting the rest I need’, ‘learning new skills which will help me get a job’ i.e.
outcomes which are not linked to one service or another but which work for the individual
to fulfil his/her life project.
23
Figure 2: A simple integrated approach to working alongside children, young people,
families and adults.
Integrated services mean having a common approach to working alongside people. These
key actions within this wheel identify common tasks across services and form the basis for
an integrated approach.
Service integration support should work in contrast to traditional service provision and one-
size-fits-all solutions. It is to be a dynamic and flexible process based on human rights and
always starting from the perspective of the disabled person, based on his/her wishes and
needs adapting to opportunity of these and changing circumstances.
VII.6 User involvement

Currently, disabled people experience varying degrees of marginalisation, exploitation and
isolation that have led society to adopt mechanisms to segregate and institutionalise
disabled people35. The social model of disability demonstrates that disability is rooted within
society's failure to provide adequate services and ensure the needs of disabled people are
35
Monitoring and evaluation of disability-inclusive development: Data and statistics o of the UN
24
considered which allow for inclusion36. In order to challenge disablist ideology and action -
whether at the individual, national or international level - user involvement is required to
ensure disabled people are positioned to influence the design, development and delivery of
services they use or require, as well as affect the direction of communities they are - or
should be - part of.
This has particular relevance to service providers as many fail to address the issue of user
involvement, which – ultimately – has a substantial negative impact on their services and the
individuals they provide assistance and support to. Evidence from various user led
organisations across Europe have highlighted how providers do not provide active,
supported and resourced roles for service users to have a key, influential role over the
design and delivery of services; furthermore, if there is dialogue between people who use
services and the decision-makers within the service, then it can be extremely tokenistic with
experience restricted opportunities.
In order to tackle social injustice and promote disability rights, different forms of
participation need to be recognised, advocated for and resourced. Whilst the Disabled
People’s Movement continues to promote the principles of inclusion and civil rights to a
global audience, disabled people and their allies - at the national level - have continuously
demanded opportunities to work with current decision-makers in order to advise on policy
and coordinate the delivery of services. Although there are examples of good practice
where disabled people have worked in equal partnership, with services and commissioners,
many states and organisations with power fail to include people who are directly affected by
the decisions taken.37
This failure to work with disabled people defies one of the fundamental principles of the
Disabled People’s Movement and diminishes the importance of the philosophy underpinning
36
Oliver, M. 1990: The Politics of Disablement. Basingstoke: Macmillan.
37
Reclaiming Our Futures Alliance. 2014. UK Disabled People’s Manifesto <
http://www.rofa.org.uk/category/uk-disabled-peoples-manifesto/>
25
Independent Living. Those actively involved in the Independent Living Movement, which - in
its most simplistic form - is defined as having the right level support to achieve what one
wants to do with their life, recognise the importance of user involvement as a fundamental
principle to achieve inclusion within society.
VII.6.1 Nothing about us, without us

The term “nothing about us without us” is used to communicate the notion that policy
decisions should not be taken without the full, supported participation of people directly
affected by the policy.38 It challenges the traditional thinking of adopting ‘centralised
decision-making’ (i.e. target driven processes with minimal involvement of people at
community level being involved in shaping design or setting outcomes), which ultimately
leads to ‘negative relationships’ (i.e. professionals and people who use services become
divided and consider each other to be a barrier to the outcome – ‘them and us’ culture).
With reductions in service resources, as well as strained relationships between people in

decision-making positions and people who use or require services, there can be a rejection
of investing or developing initiatives that support the participation and involvement of
disabled people. This is particularly evident when services and organisations adopt strategies
that minimise the involvement of disabled people, believing that participation and direct
engagement is not cost-effective or required; however, literature is replete with examples of
how organisations, services and government departments have established strategies that
ensured disabled people influence, coordinate and control policy design and development
(read Bibliography Section). Moreover, it is extremely dangerous to separate user
involvement from decision-making processes as the relationship between the two promotes
the importance of citizenship and leads to the inclusion of individuals and groups within
society.
38
http://www.ucpress.edu/book.php?isbn=9780520224810
26
To achieve user involvement ENIL advocates for co-production, which is inclusive working
practices between experts by experience and organisations. It is about equal partnership
and collaboration between parties passionate about improving service provision; every
person involved in the process of co-production is valued, respected and listened to, with
everyone involved in designing, developing and delivering. Co-production improves services,
improves communities and can help make Independent Living a reality for all.
VII.6.2 Co-Production
The term co-production originated from the University of Indiana to explain relationships
between neighbourhood communities and local police services; it was then transferred to a
health context to highlight the importance of professionals working in collaboration with
people who use services, in order to ensure people’s health needs were met. 39 Edgar Cahn, a
civil rights lawyer, developed the term to demonstrate the importance of community level
support systems, ultimately alluding to co-production as a key factor for improving an
economy.40 Whilst there has been evidence of co-productive processes being used in
different systems and environments, it is important to recognise that the core principles of
co-production can be embedded within any service, with positive outcomes if done
correctly.
The core principles of co-production are:
 Recognising that every individual is a valued and respected member of the service,
each has a role and responsibility to ensure the service being provided is effective. It
requires all of us to accept that people who use services are, in the majority of
circumstances, marginalised resources which need to be fully included and involved.
 Co-production is about innovation. This means rethinking how processes currently
operate and rediscovering the importance of shared dialogue, agreed outcomes and
39
http://www.neweconomics.org/publications/entry/co-production
40
http://www.timebank.org.nz/node/87
27
fully-inclusive environments. Society need to change how we think about service
provision and stop viewing people just as ‘recipients’ of services.
 Co-production promotes the idea of shifting the balance of power and responsibility
solely from professionals, and recognising that everyone is an individual and is
integral to the service, working together in equal partnership.
 There is an argument to suggest that co-production results in cost-effective
measures, as they produce effective outcomes for the service and therefore are less
likely to fail or require re-design.
In order to achieve successful co-production between service providers and people who use
services, it is vital that all parties involved have equal collaboration. With that being said, co-
production needs careful planning and consideration. People who use services or experts by
experience often face the dilemma of being involved in a perceived ‘co-productive process’
which appears to be positive and engaging; however, they often have limited collaboration
and very little responsibility, highlighting how disabled people are often marginalised and
disengaged once their view has been heard. Individuals who are involved in co-production
on a voluntary basis are often not rewarded for their time and effort, as opposed to paid
employees and consultants, again making it apparent that the core principles of co-
production do not always exist.
Furthermore, consultation can often be mistaken and regarded as co-production. As part of

consultations hard to reach groups may be approached and engaged during the initial stages
of co-production. However later they are not informed of the process and end result of their
input. They are also not told how their knowledge affected the outcomes. For co-production
to be true it requires equal co-planning and co-design at all stages41.
41
Co-production in social care: What it is and how to do it, website of the Social care Institute for excellence
28
BIBLIOGRAPHY/RECOMMENDED TEXTS
 EASPD: User Involvement in Social Services
 European Network on Independent Living. 2014. Factsheet on Co-production. ENIL,
Brussels.
 Holburn S. and Vietze P. 2002. Person Centre Planning – Research, Practice and
Future Directions.
 In Control: A life not a Service
 Mount B., O'Brien J. & O'Brien C. 2002. Increasing the Chances for Deeper Change
Through Person-Centered Planning.
 Nesta, The Challenge of Co-production
 O’Brien J and Towell D. 2003. Person Centred Planning In It’s Strategic Context:
Towards a Framework for Reflection-in-Action.
 O'Brien C. and O'Brien J. 2000. The Origins of Person-Centered Planning: A
Community of Practice Perspective.
 O'Brien J. and Towell D. 2004. Getting More of Life: Improving the Timeliness of
Person-Centred Approaches.
 Oliver, M. 1990. The Politics of Disablement. Basingstoke: Macmillan.
 The National Health Service (NHS) Integrated Personal Commissioning programme
 UK Department of Health. 2007. UK White paper - VALUING PEOPLE NOW.
 UK Disabled People’s Manifesto. 2014. Reclaiming Our Futures Alliance.
Resources:
 EASPD themes
 ENIL myth busters
 ENIL personal assistance tables
 In Control England
 In Control Scotland
 Independent Living Institute
 Kids UK
Training material:
 European Network on Independent Living/ILNET. 2015. Independent Living Manual.
ENIL: Brussels.
 Independent Living Training documents
 The '4 plus 1 question’s person-centred thinking tool - Helen Sanderson Associates in
the UK & Europe.
END OF HANDOUT
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D-LoT E-Learning Course

TOWARDS PERSONALISED SERVICES

B. (Skills) By the end of the course, students will be able to:

C. (Attitudes) By the end of the course, students will:

KEY MESSAGES OF THE MODULE

PERSONALISED SERVICES AND HUMAN RIGHTS

Article 19 - Living independently and being included in the community

VII.1 Definition of key terms

 Alternatives to institutional care being introduced for people with learning

 Listening: “I am listened to.” “I have a voice.” “I listen to others.” Listening and

Responsibility will be emphasized: “I am responsible for my choices.” “I receive quality

 The owning of pets;

1) What have you tried?

1) What is important to the person?

VII.3 Individual needs assessment for personal assistance

In this model policy there is the following account on needs assessment:

Need assessment takes into account

 All, not only one or several, areas of activity in one’s life,

 The need, if applicable, of experienced and specialized assistants,

To summarize, assessment of needs is to be individualized, based on life styles, wishes and

People can choose to have a mix of the three options above.

In both countries there is a commitment to making an indicative allocation of funding prior

In England there are two key pieces of legislation:

“Local authorities should, where possible, actively promote participation in providing

34A Life not a Service and accompanying materials - http://www.in-control.org.uk/news/in-control-

VII.6 User involvement

VII.6.1 Nothing about us, without us

With reductions in service resources, as well as strained relationships between people in

The core principles of co-production are:

Furthermore, consultation can often be mistaken and regarded as co-production. As part of

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