Its our world too: 5 asks for a better Public Bodies

(Joint Working) (Scotland) Bill

Disabled people and Disabled Peoples Organisations (DPOs)
which are organisations run by disabled people, believe that the
integration of health and social care presents an opportunity to
progress independent living, equality and human rights.
What is independent living?
Independent Living means disabled people of all ages having the same freedom, choice,
dignity and control as other citizens at home, at work and in the community. It does not mean
living by yourself or fending for yourself. It means rights to practical assistance and
support to participate in society and live an ordinary life1. With such support, disabled
people can participate equally and enjoy their human rights via their full and equal
participation in the civic, social, judicial and economic life of Scotland.
Civic, social and judicial participat
For many disabled people, the practical assistance they need to participate equally in society
includes support from health and social care systems. Equal access to human rights and to
live an ordinary life must be based on the principles and practices of independent living,
equality and human rights. It needs joined up thinking based on these principles. By
encouraging this sort of support, the health and social care integration has the potential to
result in the seamless health and social care disabled people have sought for many years.

The Independent Living Movement (ILM) has 5 asks for a better

Public Bodies (Joint Working) (Scotland) Bill. These are the
things wed like the Scottish Government to take into account in
the integration of health and social care in Scotland:
1

Independent living, equality and human rights should be explicit in the principles
and outcomes of health and social care integration. Services should be monitored with
this in mind.

1 ILiS (2009) The Essential Guide to Independent Living

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We believe that the health and social care integration should have independent living,
equality and human rights at its heart; from the principles on which it is developed to the
outputs of it. Current proposals for the Bill are too focussed on health and on organisational
outcomes for this to happen.
We would like to see the Bill make specific reference to independent living as one of
the outcomes of the new integrated system rather than wellbeing which is too open
to a medical interpretation.
We suggest that the definition of independent living used should be the one outlined
above. This definition has been developed by disabled people and has already been
adopted by the Scottish Government, CoSLA and the NHS as equal partners of the
Independent Living Programme2.
Using this definition of independent living will help ensure that health and social care
integration in Scotland can play its crucial part in protecting, supporting and promoting
equality and human rights for its end users.
2

Disabled people must be considered as full and equal stakeholders and coproducers in health and social care integration, throughout the Bills progress and its
implementation.
Disabled people and their organisations have a unique and invaluable contribution to make
to the design, development and delivery of integrated health and social care. Disabled
people must be respected and supported as key stakeholders and co-producers in the
development of policy, planning and delivery of integrated health and social care.
Co-production is an approach that recognises the value of partnership between disabled
people and public authorities in developing services, policies and strategies 3. The ILM has a
right to influence meaningful health and social care outcomes 4 and to be heard within policy,
service planning, design, commissioning, monitoring, through to evaluation and revision.
As organisations run by and for disabled people, DPOs bring with them direct, lived
experience of disabled people. With a focus on independent living, equality and human
rights, they consider all of the aspects of a persons life, ensuring that gains in one policy
area compliment, not work against, progress in others.
Disabled people have different needs and aspirations. DPOs should be consulted about the
most effective ways of engaging with disabled people so that their different needs and
aspirations are reflected in both process and outcomes.

2 See the signed shared vision on independent living here:

http://www.scotland.gov.uk/Publications/2010/03/29164308/1
3 Evaluation of Local Housing Strategies Co-Production Pilots, Scottish Government 2011
4 The Equality Act (2010), The UNCRPD Article 4 (2009)
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DPOs have supported the strategic development of policy and practice in many areas in
Scotland, e.g. in the Self-Directed Support agenda. They can use this experience to make
sure integration of health and social care policy is fit for purpose.
Integrated health and social care services, from developing the national outcomes to
integration plans, strategic plans and local integrated services must be co-produced with
disabled people. Partnerships with disabled people will mean that services are designed
to support independent living as well as reducing health inequalities. That will help to ensure
that services delivered are efficient, appropriate and cost effective.
A commitment to respect and consideration implies that disabled people and their
organisations will get the most appropriate and adequate amount of support to make their
participation effective and meaningful.
Advocacy is central to disabled peoples involvement in the Bill process and its
implementation and also to the full and equal enjoyment of the provisions of health and social
care. Disabled peoples right to advocacy should be enshrined in the legislation, including
that the need for advocacy is not static but will vary over time and circumstances.
3

It is important that disabled people, other users of the integrated systems and the
wider Third sector, are involved in leading, not just on the principles of an integrated
system, but on how money within it is spent, including: eligibility to access it,
assessment for it, and principles for its use.
Health and social care integration necessarily throw up questions of funding. What is health
care and what is social care? What is currently chargeable (via LAs) and what is not (via the
NHS)? Achieving the outcomes in one part of the system, e.g. to unblock beds, may result
in a greater spend or in savings in other parts of the system. What happens when savings
are made e.g. through less duplication, more targeted outcomes? Users of services must
be involved at strategic level around questions of funding for health and social care.
Systems developed to control, assess for, distribute and determine eligibility for the
integrated systems, must not be developed as rationing tools but as tools to support
independent living, citizenship and human rights. They must be based on the principles
and practices of independent living.

Social Care (Self-directed Support) (Scotland) Act 2013 and Public Bodies (Joint
Working) (Scotland) Bill 2013 must work together to promote seamless care provision.
The Scottish Government is to be applauded for its support of the principles of independent
living and the practical measures they have taken to extend the use of Self -directed Support.
The Scottish Governments SDS strategy makes it clear that service users and professionals
are to be considered equal partners in the process and that the service users are active
participants in their own support. This must be reflected in the integration agenda.
The Independent Living Movement is concerned that the proposed focus of health and social
care services places greater emphasis on the professionals role and organisations rather
than outcomes that prioritise service users. For example, integrated care should include that
a person who ordinarily uses Personal Assistance, can bring their PAs into hospital with them
to carry out the normal duties that are required on a longer term basis. SDS funding should
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not stop when someone is admitted to hospital. This is not about the person directing their
health service money; it is about them directing the money they get to support them to live
independently in the community, including as they enter and exit the health service. In this
way, their care will be seamless as they move from receiving one service to another, their
choices will be respected and their control guaranteed.

5. The integration agenda should not further entrench health inequalities. An

understanding of current levels of unmet need and the real cost of health and social
care must inform the budget-setting process.
We know that disabled people are subject to significant health inequalities and that there are
significant levels of unmet need within the social care system in Scotland 5. Budgets set
without an understanding of current levels of unmet need and the real cost of health and
social care will further entrench health inequalities and will infringe disabled peoples human
rights to independent living.
At the present time support is mainly provided on the basis of critical needs e.g. help to go to
the toilet. Social support or support to spend time with families is rarely considered. A large
amount of what must be funded by law is left open to local discretion, guided by a loose set
of national eligibility guidance. Any need identified below what a LA sets as its eligibility bar
has no status, no claim upon resources. This has major implications for disabled peoples
human rights. It can also have a negative impact on their health in the long-term.
Furthermore, variability, both between local authorities and between service user groups,
about where the bar actually falls, results in major inequalities of service. As unmet need is
unrecorded LAs cannot realistically budget for the real cost of social care that stands up to
the principles of equality and human rights on which the integration of health and social care
is supposed to be based.
There is a need to link more clearly the assessment and support to which individuals
are entitled, with whole-area planning6 and not merely carry out a headcount of people
with social care needs who are not receiving care/support. Recording unmet need should
be part of the individual assessment duty. Authorities should be required to report on that
unmet need in their strategic needs-assessment and planning processes.
Integrated authorities should set out clearly the minimum level of entitlement for all
users and record all unmet need falling below this, set against equality and human
rights outcomes. For example, where the minimum is support to shower/bathe daily and
someones need for support to shave or put on make-up is not funded, it should be recorded
as a need that remains unmet.
5 http://www.scotland.gov.uk/Topics/Health/Support-Social-Care/Support/Older-People/Free-PersonalNursing-Care/Guidancehttp://www.scope.org.uk/news/massive-economic-benefits-providing-social-caredisabled-people

6 http://www.scotland.gov.uk/Topics/Government/PublicServiceReform/CP
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A formal right to independent appeal, for example by setting up a Social care Tribunal System
should be included in the Bill.
For more information, contact: Pam Duncan, Policy Officer, Independent Living in Scotland
project (ILiS www.ilis.co.uk) pam@ilis.co.uk