Response to ‘Fulfilling Potential’ from Alison Giraud-Saunders1. I am pleased that the Government is consulting on the framework for a strategy forindependent living for disabled people, as many disabled people and their families are veryworried about the cumulative impact on them of a range of Government and local policies andactions.2. This is timely also in relation to the publication of the recent report on independent living fromthe Joint Committee on Human Rights (JCHR).Realising aspirations3. I supported the Independent Living Strategy when it was published in 2008 and stronglysupport the JCHR‟s view that the right to independent living should be enshrined more explicitly inlaw as well as Government policy in the UK.4. However, I do have some continuing concerns about whether policy specific to different groupsis sufficiently joined up. For example, there are separate strategies for people with learningdisabilities, people on the autistic spectrum, people with dementia and for mental health (includingpeople with mental health problems). The Green Paper for England „Support and aspiration: A newapproach to special educational needs and disability‟ contained many welcome proposals forimproving support for disabled children; again, this needs to join up clearly with a coherent policyfor all disabled adults to form a proper „life course‟ policy. Whilst specific attention is undoubtedlyrequired to each of these groups to ensure that the particular barriers they face are tackled, it cansometimes feel as though different groups are being set up to compete with each other, instead ofall disabled people feeling part of a common movement. I accept that some of this arises fromdivisions within the disability movement itself, but it is helpful for Government policy to set a cleardirection for all disabled people, within which specific needs are clearly addressed. Ideally I wouldlike to see a common position on this across all four countries of the UK, co-ordinated by thenational focal point in Government (the Office for Disability Issues), so that disabled people areable to move freely across boundaries, confident that their right to independent living will berespected and supported wherever they choose to live in the UK. However,I recognise that each ofthe four countries has its own health and social care competencies, so that aligning policy andpractice 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 policyand 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.
6. Many of the proposals in „Support and Aspiration‟ hold out promise for a better co-ordinatedsystem of support that is more clearly focused on expectations of an ordinary life. It is vital that thispolicy is strongly linked into policy for adults.Individual control7. I remain particularly concerned that policy and law in respect of disabled people eligible forNHS Continuing Healthcare (CHC) funding is not securely linked to the right to independent livingand I am disappointed that the JCHR report does not seem to have commented on this. I ampleased that the CHC good practice guidance for England does emphasise the importance ofpersonalised support, but practice in the field remains variable. Law governing the NHS, ascompared with social care, allows disabled people who are eligible for NHS CHC funding lesschoice and control. The Government has proposed that people eligible for NHS CHC fundingshould be entitled to a Personal Health Budget by 2014. This is helpful (though two years is a longtime to wait in many people‟s lives), but I would like assurance that the allocation of such budgetswill be based on support for independent living.8. Involvement in research and development work over the last few years on issues of mentalcapacity convinces me that the Mental Capacity Act is a vital element of policy in relation toindependent living. Good understanding of the principles and their application to practice isrequired 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 andinsurance. Many organisations have offered their staff training on implementation of the MentalCapacity Act, but I am concerned that the quality of practice remains variable and implementationof the Act is not always securely embedded in organisational strategies and systems, such assafeguarding and workforce development. Further, scandals such as the abuse at WinterbourneView demonstrate a lack of awareness or regard for the interplay between the Mental Capacity Actand the Mental Health Act.9. The Winterbourne View case and the inspection reports that have been appearing in its wakefrom the Care Quality Commission show that some groups of people are at particular risk of nothaving individual choice and control. This is despite plenty of good practice guidance. We needlaw 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; thepersonal cost to individuals and their families is incalculable.10. I was delighted that the Government reversed its view on the eligibility of people living inresidential care for the mobility element of Disability Living Allowance (DLA). However, I amconcerned by rumours that this may exclude people who are funded through NHS CHC. I verymuch hope these are unfounded.11. Another example of the need to ensure joined up policy relates to the Personal IndependencePayment, expected to replace DLA. This should be based on a clear statement about thecontribution 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 seemuch 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 responseto past pressure from the disability movement and thus did not form part of a truly coherent policyresponse to the right to independent living. What they did demonstrate was the value that disabledpeople and their families attach to the freedom to organise their own support, using a clearallocation of funding. Thus the ILF laid the ground for personal budgets and personal healthbudgets. The option of a cash benefit for disabled people, possibly in the form of a disabilitypension focused on support for independent living and subsuming the current artificially dividedrange of benefits and service entitlement, is worthy of serious consideration.
13. Whilst it is important to retain the principle that a benefit is awarded to an individual, it is alsoimportant to consider the impact on a household. Many disabled people live in households thathave more than one disabled member. For example, parents may be caring for two adult disabledsons/daughters; a disabled parent may also have a disabled child, or a disabled couple may beliving together. There isa growing number of families in which an older person with learningdisabilities is becoming a carer for their much older parent(s) (mutual caring). In these situations itis not uncommon to find that the disabled members of the household do not individually meet theincreasingly stringent criteria for social care, yet the household circumstances taken as a wholeare more complex than would be realised if one looked at each individual in isolation. Using DLAor combined housing benefit entitlements can enable a family to stay together, to manage and toavoid much more expensive state intervention.14. Housing concerns loom large for many disabled people who have great difficulty in finding andaffording suitable accommodation. Shared ownership was one way for some disabled people toget on the housing ladder and enjoy secure tenure, but changes in Support for Mortgage Interestand FSA rules have already called a halt to successful schemes and some existing shared ownerswill be forced out of their homes.15. No comment on improving choice and control can be complete without recognition of the vitalrole played in many people‟s lives by family carers. This is especially so for people with morecomplex needs, such as people whose behaviour challenges and people dependent on medicaltechnologies. Too many families‟ experience is still of a system (or, rather, multiple systems) thatdoes not support them as a family in their aspirations for their sons and daughters. The impact onfamily 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 coherentdisability strategy.Attitudes and behaviours16. I welcome the JCHR‟s call for an Equality Impact Assessment on the cumulative impact ofsimultaneous changes in many aspects of Government policy that affect disabled people and theirfamilies. This should include the impact of the Government‟s presentation of issues such aswelfare reform. A most unpleasant side-effect of this has been the increase in negative reporting ofdisability and reported changes in public attitudes.17. Many of the concepts at the heart of the „big society‟ debate resonate strongly with valuesespoused by the disability movement: citizenship, empowerment, self-help, connection with yourlocal community. However, there are three interlinked concerns that I hear from disabled peopleand 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 islaudable. 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 localvoluntary organisations, that are being cut as local councils seek to live within their budgetsettlements. This is perverse, as reductions in such support will inevitably lead to increaseddemand later for more intensive support.
19. It is not yet clear whether or how representational structures such as Learning DisabilityPartnership Boards, the National Forum and the National Valuing Families Forum will continue orhow they will link into new structures such as Health and Wellbeing Boards. A great deal of efforthas been invested in raising the profile and representation of people with learning disabilities andtheir families at a local level and I am of course keen that this should be sustained and built upon.Alison Giraud-SaundersIndependent consultantChair, National Family Carer Network8.3.12