1. The document discusses concerns around the government's strategy for independent living for disabled people and ensuring joined-up policy across different groups. It argues the strategy needs a life course approach linking support for children through to adults. 2. Concerns are raised about choice and control for disabled people eligible for NHS funding and implementation of the Mental Capacity Act. Poor practice in some areas like Winterbourne View shows more needs to be done to ensure individual choice for all. 3. Housing, benefits and family carer support are also discussed as vital to independent living. Attitudes towards disability and concerns that 'big society' cuts could damage community support services are raised.

1. Response to ‘Fulfilling Potential’ from Alison Giraud-Saunders
1. I am pleased that the Government is consulting on the framework for a strategy for
independent living for disabled people, as many disabled people and their families are very
worried about the cumulative impact on them of a range of Government and local policies and
actions.
2. This is timely also in relation to the publication of the recent report on independent living from
the Joint Committee on Human Rights (JCHR).
Realising aspirations
3. I supported the Independent Living Strategy when it was published in 2008 and strongly
support the JCHR‟s view that the right to independent living should be enshrined more explicitly in
law as well as Government policy in the UK.
4. However, I do have some continuing concerns about whether policy specific to different groups
is sufficiently joined up. For example, there are separate strategies for people with learning
disabilities, people on the autistic spectrum, people with dementia and for mental health (including
people with mental health problems). The Green Paper for England „Support and aspiration: A new
approach to special educational needs and disability‟ contained many welcome proposals for
improving support for disabled children; again, this needs to join up clearly with a coherent policy
for all disabled adults to form a proper „life course‟ policy. Whilst specific attention is undoubtedly
required to each of these groups to ensure that the particular barriers they face are tackled, it can
sometimes feel as though different groups are being set up to compete with each other, instead of
all disabled people feeling part of a common movement. I accept that some of this arises from
divisions within the disability movement itself, but it is helpful for Government policy to set a clear
direction for all disabled people, within which specific needs are clearly addressed. Ideally I would
like to see a common position on this across all four countries of the UK, co-ordinated by the
national focal point in Government (the Office for Disability Issues), so that disabled people are
able to move freely across boundaries, confident that their right to independent living will be
respected and supported wherever they choose to live in the UK. However,I recognise that each of
the four countries has its own health and social care competencies, so that aligning policy and
practice across the UK on how the Convention obligations are delivered may not be practical.
5. I remain concerned that both aspirations and the ability to realise them are damaged by policy
and practice that segregates disabled people from an early age. For example:
disabled children, particularly those with more complex health problems, often receive the
vast majority of their health care through community paediatricians and child development
teams. Whilst the care they receive is often excellent, and much appreciated by parents, an
unintended consequence is often that they are virtually unknown to their family doctor. At
age 18 there is no single medical practitioner who knows them as a person and
understands how to manage the range of their health problems in ways that support their
aspirations for a fulfilling life
serious dilemmas remain in education about the relative advantages and disadvantages of
special educational provision for young disabled people; personally I am convinced that
non-disabled young people benefit from growing up with disabled peers
persistent disadvantage remains in access of disabled young people to the same range of
work preparation and experience as their non-disabled peers. Assumptions about ability to
work are formed from an early age: how many disabled children are encouraged to dress
up as firemen or nurses? How many disabled young people do a paper round or get a
Saturday job? „Boundary‟ disputes persist about who should pay for transport or a
communication aid or a support worker to enable a disabled young person to go on work
experience at the same time as the rest of their class.

2. 6. Many of the proposals in „Support and Aspiration‟ hold out promise for a better co-ordinated
system of support that is more clearly focused on expectations of an ordinary life. It is vital that this
policy is strongly linked into policy for adults.
Individual control
7. I remain particularly concerned that policy and law in respect of disabled people eligible for
NHS Continuing Healthcare (CHC) funding is not securely linked to the right to independent living
and I am disappointed that the JCHR report does not seem to have commented on this. I am
pleased that the CHC good practice guidance for England does emphasise the importance of
personalised support, but practice in the field remains variable. Law governing the NHS, as
compared with social care, allows disabled people who are eligible for NHS CHC funding less
choice and control. The Government has proposed that people eligible for NHS CHC funding
should be entitled to a Personal Health Budget by 2014. This is helpful (though two years is a long
time to wait in many people‟s lives), but I would like assurance that the allocation of such budgets
will be based on support for independent living.
8. Involvement in research and development work over the last few years on issues of mental
capacity convinces me that the Mental Capacity Act is a vital element of policy in relation to
independent living. Good understanding of the principles and their application to practice is
required throughout the range of services that are needed to make a reality of independent living,
especially in housing, health and social care, and financial services such as banking and
insurance. Many organisations have offered their staff training on implementation of the Mental
Capacity Act, but I am concerned that the quality of practice remains variable and implementation
of the Act is not always securely embedded in organisational strategies and systems, such as
safeguarding and workforce development. Further, scandals such as the abuse at Winterbourne
View demonstrate a lack of awareness or regard for the interplay between the Mental Capacity Act
and the Mental Health Act.
9. The Winterbourne View case and the inspection reports that have been appearing in its wake
from the Care Quality Commission show that some groups of people are at particular risk of not
having individual choice and control. This is despite plenty of good practice guidance. We need
law and Government policy to be explicit that the goal of independent living is for everyone, not for
„everyone except this difficult group‟. Poor practice costs the country large sums of money; the
personal cost to individuals and their families is incalculable.
10. I was delighted that the Government reversed its view on the eligibility of people living in
residential care for the mobility element of Disability Living Allowance (DLA). However, I am
concerned by rumours that this may exclude people who are funded through NHS CHC. I very
much hope these are unfounded.
11. Another example of the need to ensure joined up policy relates to the Personal Independence
Payment, expected to replace DLA. This should be based on a clear statement about the
contribution it is expected to make to independent living and quality of life, so that phrases such as
“necessary to everyday life” are not open to widely differing interpretations. I would like to see
much greater clarity about the complementary roles of the PIP, social care and health care
(including NHS CHC).
12. I appreciate that the Independent Living Funds (ILF) grew in a piecemeal fashion in response
to past pressure from the disability movement and thus did not form part of a truly coherent policy
response to the right to independent living. What they did demonstrate was the value that disabled
people and their families attach to the freedom to organise their own support, using a clear
allocation of funding. Thus the ILF laid the ground for personal budgets and personal health
budgets. The option of a cash benefit for disabled people, possibly in the form of a disability
pension focused on support for independent living and subsuming the current artificially divided
range of benefits and service entitlement, is worthy of serious consideration.

3. 13. Whilst it is important to retain the principle that a benefit is awarded to an individual, it is also
important to consider the impact on a household. Many disabled people live in households that
have more than one disabled member. For example, parents may be caring for two adult disabled
sons/daughters; a disabled parent may also have a disabled child, or a disabled couple may be
living together. There isa growing number of families in which an older person with learning
disabilities is becoming a carer for their much older parent(s) (mutual caring). In these situations it
is not uncommon to find that the disabled members of the household do not individually meet the
increasingly stringent criteria for social care, yet the household circumstances taken as a whole
are more complex than would be realised if one looked at each individual in isolation. Using DLA
or combined housing benefit entitlements can enable a family to stay together, to manage and to
avoid much more expensive state intervention.
14. Housing concerns loom large for many disabled people who have great difficulty in finding and
affording suitable accommodation. Shared ownership was one way for some disabled people to
get on the housing ladder and enjoy secure tenure, but changes in Support for Mortgage Interest
and FSA rules have already called a halt to successful schemes and some existing shared owners
will be forced out of their homes.
15. No comment on improving choice and control can be complete without recognition of the vital
role played in many people‟s lives by family carers. This is especially so for people with more
complex needs, such as people whose behaviour challenges and people dependent on medical
technologies. Too many families‟ experience is still of a system (or, rather, multiple systems) that
does not support them as a family in their aspirations for their sons and daughters. The impact on
family carers‟ physical and mental health is well known: learning from the National Carers‟
Strategy Demonstrator Sites programme needs to be rolled out as a vital element of a coherent
disability strategy.
Attitudes and behaviours
16. I welcome the JCHR‟s call for an Equality Impact Assessment on the cumulative impact of
simultaneous changes in many aspects of Government policy that affect disabled people and their
families. This should include the impact of the Government‟s presentation of issues such as
welfare reform. A most unpleasant side-effect of this has been the increase in negative reporting of
disability and reported changes in public attitudes.
17. Many of the concepts at the heart of the „big society‟ debate resonate strongly with values
espoused by the disability movement: citizenship, empowerment, self-help, connection with your
local community. However, there are three interlinked concerns that I hear from disabled people
and their families:
 a perception that „big society‟ rhetoric is no more than a cynical cover-up for massive cuts in
public spending, with family carers in particular feeling that it means increased reliance on
them
 a concern that the concept could be interpreted as implying a return to a view of disabled
people as passive objects of charity
 an acute anxiety that profoundly disabled people and their families may be increasingly
expected to rely on a patchwork of volunteer support rather than being able to expect reliable,
publicly funded services.
18. The aspiration for disabled people to play more active and visible roles in their communities is
laudable. However, many require support to achieve this and it is precisely the low level
„community connecting‟ and information/advice services that enable this, often provided by local
voluntary organisations, that are being cut as local councils seek to live within their budget
settlements. This is perverse, as reductions in such support will inevitably lead to increased
demand later for more intensive support.

4. 19. It is not yet clear whether or how representational structures such as Learning Disability
Partnership Boards, the National Forum and the National Valuing Families Forum will continue or
how they will link into new structures such as Health and Wellbeing Boards. A great deal of effort
has been invested in raising the profile and representation of people with learning disabilities and
their families at a local level and I am of course keen that this should be sustained and built upon.
Alison Giraud-Saunders
Independent consultant
Chair, National Family Carer Network
8.3.12