Disabled Persons (Independent Living)Bill [HL]

My Lords, I give my warm support for this hugely welcome and much-needed Bill, so clearly and comprehensively described by the noble Lord, Lord Ashley of Stoke, and so cogently argued for by other noble Lords, from different sides, with a wealth of experience. This is not a very wheelchair-friendly microphone; the other one used to be more moveable. I must declare a close interest, in that I have for the past four years needed increasing amounts of help with personal care: washing, dressing and getting out of, and now getting into, bed. I am in receipt of a higher rate of disability allowance, which in no way covers all the costs. I do not qualify for any further financial help. I add this only to make it clear that this is not a personal moan, but one on behalf of all those who cannot manage and are not in control of their lives. I hope my remarks will dovetail with, rather than repeat, those of the noble Baroness, Lady Wilkins, who speaks from a wealth of experience in independent living. The people using social care services now feel that they are often inadequate, inflexible and focus on what Peter Beresford, of the service user network Shaping Our Lives, describes as, "““providing bodily maintenance at best, keeping people within their own four walls rather than offering them social support to enable them to be part of the wider world””." Hence there is so much wasted potential and so many examples of extensive equality gaps between disabled and non-disabled people. Many people and families, as indicated by the noble Lord, Lord Ashley, receive no support at all from the state until they reach crisis point. This year, many disabled people will find services withdrawn as councils struggle to balance the books. The system is in crisis and it can only get worse as our population ages. As the noble Baroness, Lady Verma, mentioned the many informal carers in her thoughtful and experience-based maiden speech, I shall mention the young carers—12 year-old schoolchildren, some with learning disabilities—that councils rely on. I hope that an amendment to the Education and Inspections Bill will help schoolsto support these children. It is, however, totally inappropriate that they should be relied on at all. Rationing services is justified on the grounds of scarce resources, but huge resources are wasted on what Bert Massie, the chair of the DRC, has called, "““a cat’s cradle of costly red tape””," and are tied up in block contracts and costly residential provision. We could support more people to achieve truly independent living by redirecting those resources into the system proposed by the Bill, as other noble Lords have mentioned. There ishuge support for the Bill from individuals and organisations across the board because it is rooted in people’s experiences and delivers the new approach they want. Disabled people must have control over how, when and by whom their personal assistance is provided. Inflexible support makes it difficult, if not impossible, to work and participate in public and community life. I hope the Minister will give the matter of earned income some thought and reply on it. At present, earned income is disregarded for home care charging and independent living fund payments—my noble friend Lady Wilkins successfully campaigned for that—but not for other forms of support. The report Improving the Life Chances of Disabled People highlighted the continuing barriers to work thrown up by the current system. A disabled person living in residential care faces significant financial disincentives to seeking paid employment, as he would be able to keep only £20 a week of his earned income before it has to be used to pay the residential home fee. In a footnote, the report stated: "““While the numbers of disabled people living in residential homes who would be able to work are small, the Strategy Unit did receive evidence that there are some in this situation””." So we are talking about only a very small number of people. The report also stated that, "““there should be a national charging policy which so far as possible minimises financial disincentives to seek paid employment””." Thus the policy on disregarding earned income for community care charging, "““will need to be extended to the means test for … residential care””." Will the Government act on this as a matter of urgency? It would not cost very much, but would make a massive difference to the people concerned. I hope when the Minister answers she may be able to respond on this or will indicate that she will look into it. I think it could probably be done without the Bill. I do not know whether primary legislation would be needed to change this. I would be interested to know whether we have to wait for the Bill, because this would concern only a small number of people. To give an example, a man of 28 who has lived in residential care for the past five years—although he was told that it was only a temporary measure—is a first-class honours graduate in geophysics from the Open University. He has recently been headhunted for two jobs designing websites accessible for disabled people. He has had to refuse and is doing voluntary work designing websites and teaching IT in a school once a week. If individual budgets and self-directed support are to work effectively, we need a solid infrastructure of information, advice, advocacy, expertise and support. For that reason, the life chances strategy pledged an independent living centre for disabled people in every locality by 2010 to help make that a reality. However, at the moment, centres are closing because of lack of core funding and inequalities in the contracting process, and there is no plan to secure this key recommendation. The Bill requires local authorities and NHS bodies to develop, support and sustain local user-led organisations, including centres for independent living, and to foster partnerships between them. I passionately hope that the Government will support the Bill. It does everything that they say they want to happen, and more. Disabled people welcomed the commitments to independent living in the White Paper on life chances, but there is a danger of those commitments coming to be viewed as nice rhetoric with no prospect of being turned into reality. The concepts of choice, freedom and independent living litter many a government policy document, but there is no reference to them in community care law. If we want to make independent living real, we need a new law that reorients our whole social care system towards independent living. That is precisely what the Bill would achieve, so I hope that it has a speedy journey into law.