Disabled Persons (Independent Living) Bill [HL]

My Lords, I welcome the Bill most warmly, and I congratulate the noble Lord, Lord Ashley of Stoke, on his ceaseless efforts to promote independent living for disabled people. As president of Mencap, which represents both people with a learning disability and their families, and through my own personal experiences, I am only too aware that such a disability ensures discrimination and denial of choice and freedom, both for the learning-disabled person and for their family carers. In the past, Ministers have said that they support the principles of the Disabled Persons (Independent Living) Bill and that those of us campaigning on behalf of disabled people should be encouraged by recent changes in legislation and policy, which will transform disabled persons' lives. However, I wish to paint a very different picture of what is actually happening to disabled people, in particular the United Kingdom’s one-and-a-half million people with a learning disability, as well as their families and carers. Only by introducing measures such as the ones in this Bill will we see tangible steps taken towards realising the Government’s aim of equal citizenship for disabled people by 2025. Of course, we have come a long way since people with a learning disability were kept hidden from public view or segregated for life in so-called hospitals. But the sad fact is that increasingly inadequate funding and the tightening eligibility criteria for crucial social care is turning back the clock for many disabled people, leaving those with a mild or moderate learning disability receiving no support whatever, and much reduced support for those who remain entitled to care. Disabled people are being charged for previously free basic social services, even though we know they are already twice as likely as non-disabled people to be living in poverty. Meanwhile, family carers are left to plug these big gaps in basic care, many having to give up gainful employment to perform these relentless tasks. No doubt, the Minister will reply that some steps are gradually being taken towards the aim of equal citizenship, such as in the field of employment support for disabled people. That is absolutely correct, but when it comes to people with a learning disability, how might they cope in a new workplace if they have not had the training in social skills for which this Bill legislates, or if they have not been supported to participate in other inclusive activities throughout childhood and early adulthood? We need a holistic approach to independence and, for me, that is what the Bill is all about. For many with severe learning disabilities and their families, the crisis in care provision has been exacerbated following the recent campus closures in residential NHS care. The closure of these campuses is very welcome but too often results in a reduction of support for the individual as local authorities try to save money. I believe that the duties set out in the Bill would make it harder for local authorities to provide inadequate levels of support. My noble friend Lady Boothroyd raised this matter in her Oral Question to the Minister, Lord Darzi, last Tuesday. She asked: ""Is he aware that local authorities have no legal obligation to provide 24-hour care services and that some have abandoned plans to build special housing?"." Unfortunately, the Minister did not answer that extremely pertinent question directly, merely contenting himself with, ""Government policy is clear: everyone could benefit from good support to live in the community if that support is tailored to their particular requirements. I cannot stress enough what at local level that personalised care should be about".—[Official Report, 10/3/09; col. 1053.]" Your Lordships will no doubt note that in interpreting the Minister's response, there appears to be no statutory obligation on local authorities to provide good, or even adequate, services, exactly as spelt out by my noble friend Lady Boothroyd. Unless local authorities know precisely what is expected of them and the necessary finance is there, learning disabled people will be left to get on with the minimum support, as has been their unhappy lot throughout the centuries. Those in the House today may have heard of the widely reported case, documented by Channel 4 in January and referred to by David Lodge in his contribution to two most moving and thought-provoking articles about learning disability, which appeared in the Guardian on the Saturday following the death of Ivan Cameron. Perhaps I may quote the now deceased Lord Byron and, ""lend fresh interest to a twice-told tale"." This unbelievable story is of a family in Norfolk struggling to cope with the transfer of care from an NHS campus. The daughter, Tracy Butt, is 44 and has cerebral palsy and epilepsy. She cannot speak, has very limited understanding and must use a wheelchair to move. Her parents are in their sixties and have suffered ill health—the mother from cancer and the father undergoing a heart bypass operation. Recently, the Norfolk primary care trust told them that the bungalow where Tracy received residential care would be closed. The replacement was to be supported living; in effect a quick transition from full support to extremely limited support, expecting Tracy to cook and to use household appliances, even though such actions were clearly beyond her capabilities. The harsh reality is that her hard-pressed parents would have to fill those gaps. Their fight with social services goes on, as it does for more and more people moved from residential care without a realistic assessment of their complex needs. Enabling independence does not mean withdrawing help. It means supporting people to make their own decisions, to shop, to manage their money or to travel. Some people will need support with all aspects of daily life, including personal care. The vast majority of disabled-people support tends to be an essential part of independence. I am concerned that the Government are in denial about the scale of the problem. They need to carry out an urgent survey on the quantity and quality of provision being offered to disabled people seeking independent living. Much of this work has already been done for them by research carried out by others such as the Learning Disability Coalition. Its Tell It Like It Is report last year drew from surveys of people with a learning disability and their experiences of cuts in social care: 34 per cent had seen their daytime activities cut; and 37 per cent of people whose college courses were cut are now staying at home instead. There is further evidence of removals of employment services, transport services and respite care homes. So let us stop denying that there are cuts in services. Furthermore, a recent study by the Centre for Disability Research, commissioned by Mencap and the Learning Disability Coalition, suggests the social care needs of adults with learning disabilities will increase by up to 5.5 per cent per year from 2009 to 2026, compared with the Government’s previous estimates of just 1 per cent growth. The reason for this includes a higher survival rate of babies with profound and multiple teaming disabilities. If this is not addressed, we will continue to see deteriorating levels of social care. As specified in the Bill, each local authority and NHS body must identify how many disabled persons are in its area, together with his or her needs, and plan support accordingly. Given the inadequate anticipation of disabled people's needs applying at present, this is clearly a necessary step. Personalisation done properly must identify the individual's needs and the necessary funding should then be calculated, rather than the current practice of cutting the cake into even thinner slices. The Bill proposes a fair and sensible approach to enforcing this, through the introduction of a national resource allocation framework, a move advocated by Mencap and others in the disability sector. Such a system should involve assessment of disabled people with the purpose of working out their entitlement to care. Entitlements set out in a national strategy will avoid the postcode lottery that sees unfairness for those with moderate learning disabilities who happen to live in the three quarters of councils which now support only those with substantial or critical needs. The resource allocation framework is the logical way of enforcing the principles of personalisation, this ensuring that both local authorities and central government understand the many challenges to be overcome before disabled people may truly experience independence. Also welcome in the Bill is the introduction of the duty to allocate an individual budget. In 2007, the Government stated in Putting People First that individual budgets should be implemented by 2013. But there is no sanction to ensure that this will happen unless it is enshrined in legislation, so that choice over social care is not limited to a minority. Perhaps the fear of individual budgets for government and local authorities is that they can no longer hide cuts in provision when that provision is given as a cash payment. So when the Minister responds, I hope that she will acknowledge that equal citizenship for disabled people, especially those with a learning disability—whom I have a particular reason to support—is still a long way off, and that the Government must increase funding to make independence and equality of opportunity a reality. We know that the Government are due to publish a social care Green Paper later in the year, and I trust it will be truly aspirational for all disabled people. At least it should recognise the many basic needs which are still required by disabled people who, if it were not for the tireless and often unrecognised support of their families, would be left to lead an unhappy, undignified and, for some, quite impossible life.