Disabled Persons (Independent Living) Bill [HL]

My Lords, I warmly thank the noble Lord, Lord Ashley, for his dogged perseverance in bringing the Disabled Persons (Independent Living) Bill back before this House. I declare several interests in relation to it. First, I am a trustee of the National Centre for Independent Living. NCIL is a national organisation of disabled people which strongly supports the Bill. Its members are probably watching this debate on their computer screens across the country, so we are being watched avidly. Secondly, I have had the honour of chairing the government working group on the right to control. This work helped bring about the legislative commitment, enshrined in the Welfare Reform Act, to give disabled people control over any support service that increases active participation in the community, including work. Lastly and highly relevantly, I am a commissioner of the Equality and Human Rights Commission. I was recently privileged to be the lead commissioner on its report, From Safety Net to Springboard, which examines the state of social care and other public services addressed in the Bill. It sets out a number of recommendations that mirror much of the Bill’s intent. It describes a "care crunch"—not a credit crunch—resulting from inadequate provision and missed opportunities which risk undermining Britain’s future social and economic success by exacerbating inequalities, disregarding human rights and creating tensions between generations and social groups. The existing care and support system is seen as a marginal public service. It does not enjoy the status of health and education. It provides a safety net, propped up by individual goodwill among families. It is not treated as contributing positive social and economic outcomes. We at the commission believe that that is wrong. Social care has the potential to be a springboard for independent living, promoting the capabilities of individuals and their families to contribute socially and economically. The recommendations of the commission’s report completely echo the provisions in this Bill. For example, the report proposes a national framework of guaranteed outcomes based on human rights principles, exactly as provided for in the Bill. It recommends action to ensure the availability of independent advocacy, also proposed in the Bill. Independent advocacy can make the difference between keeping and losing a job. It can mean the difference between being able to manage one’s own support and budget and having that done for you. The vital importance of advocacy is highlighted by a man whom I shall call John. This is a story that I heard last week. John has a progressive neuromuscular impairment like mine. During a recent social care assessment, his local authority tried to withdraw funding for overnight assistance, arguing that it was a medical need. The local authority claimed that the purpose of being turned in the night was to avoid pressure sores. "But I have a ripple bed", he said; "it’s not pressure sores, it’s discomfort". But they insisted on deeming it a medical matter. John’s local PCT rightly refused to fund this assistance, so the local authority said that being turned at night was not essential and that if John was uncomfortable he should take painkillers before he went to sleep. John said, "But what if I need a drink in the night?". "Drink more before you go to bed", they said. "But if I do that, I’ll want to go to the loo". "Use a catheter", was their response. To be treated in this way is degrading and, arguably, contrary to the provisions of the Human Rights Act. John is young and articulate; he is in the legal profession as an advocate, and he was able eventually to rebut the local authority. However, he told me that fighting to preserve his dignity was incredibly difficult and demoralising. I fear that older disabled people and others who do not have such strength of character will fare less well; they will go to sleep tonight with discomfort and have to decide whether to take painkillers because there is no one there to assist them. Advocacy and access to peer support are essential tools in preventing abuse. Finally, I draw attention to the part of the Bill that will give disabled people the same freedom of movement as that enjoyed by our non-disabled peers. Noble Lords will know from the Health and Social Care Bill that I am intent on raising the issue of the inequality of non-portability. I should like the Minister to tell me how things are going on this issue, as she will remember that quite a few promises were made from her Bench during that debate. It is unacceptable that people cannot move between local authorities with their social care intact. Instead, they have to beg for resources all over again through the reassessment process. They are often subjected to different rules regarding who gets help and who does not. There is no guarantee that a new assessment will support or continue your way of life. The Government have already embarked on many positive steps, creating greater choice and control for disabled people. However, gross anomalies still abound, such as the absence of a clear entitlement to manage your support if you qualify for continuing health funding. We still have a system of statutory guidance that allows local authorities to restrict support in ways that thoroughly undermine human rights. We have a system in which those in residential care have fewer rights of review and redress than inmates of HM prisons. Such anomalies threaten lives, weaken families and damage our communities and economy. The noble Lord’s Bill would remove these anomalies; it would free people not just to exist but to participate and contribute to society. The commission, and the Disability Rights Commission before it, is right to assert that the pace of change must accelerate to avoid damaging the social and economic fabric of our society. The noble Lord is offering us a vehicle to deliver that change. We cannot afford to say no again.