Disabled Persons (Independent Living) Bill [HL]

My Lords, I applaud my noble friend Lord Ashley for once again giving us the opportunity to press for legislative reform of the care and support framework. It took no fewer than 19 attempts over 10 years to ensure that disability discrimination legislation reached the statute books. I hope that we will not have to wait so long for the independent living Act, or something very similar to it. I have some reason for optimism. I hope it is justified. Since this Bill was first introduced to your Lordships' House in 2006, it has driven a range of positive developments in relation to independent living. The independent living strategy, published last year, was in large part a response to the Bill and the huge support it generated. This was very welcome. For the first time, we have a cross-government commitment to driving forward policies that take us closer to freedom, choice and control for all. I hope the Minister will be able to update us on progress in delivering the strategy and how disabled people will be involved in monitoring it and holding the Government to account. The Bill has also helped to bring Government to acknowledge that the care and support system is in need of radical reform, hence the Green Paper on social care reform that we eagerly await, and the Law Commission review of the legislative framework for adult social care. It has also intensified the demand and pressure for roll-out of individual budgets resulting in Putting People First, the transformation programme for adult social care, which is an attempt to galvanise local authorities into action in individualising funding and moving their systems towards delivering choice and control to disabled people. Two Bills currently before Parliament extend this approach, with the Health Bill providing for piloting personal health budgets and the Welfare Reform Bill piloting a right to control employment and related support funding. Pilots of individual budgets for disabled children and their families are also being pursued. Lifetime homes are another measure at the heart of the Bill and, again, this is an area where we have won significant gains. All social housing must meet the standards by 2011 and the private sector has until 2013 to deliver of its own volition or face regulations to force it to do so. So there is widespread acceptance of the need for reform and important steps being taken towards it and my noble friend Lord Ashley can take considerable credit for this. However, all these disparate initiatives seem to indicate a piecemeal approach to independent living. There is a danger that they may further fragment the response to disabled people's needs. Where is the joined-up thinking between individual budgets for personal care, the piloting of personal health budgets and the individual budgets for disabled children? How do they tie in with the right to control which forms part of the Welfare Reform Bill currently making its way through Parliament? None of these initiatives recognises the fundamental importance of advocacy to deliver independent living. Disabled people need a secure framework of local advocacy provision throughout the country to make a reality of choice and control. Advocacy services are crucial in ensuring that disabled people make choices for themselves—choices which might otherwise be made on their behalf by other people. Can the Minister tell the House whether the Government are making any firm progress in this area? Only legislation can deliver the fundamental transformation and reform required for independent living. That is why we continue to urge the Government to seize the opportunity presented by this Bill; for it is, and always has been, a golden opportunity to deliver the transformation that the Government have promised, and rectify the flaws in legislation which create barriers to human rights and independent living. As we have already heard, the Government need to consider the risk of leaving fundamental reform too late and not pursuing it vigorously enough. The Commission for Social Care Inspection's recent State of Social Care report warns that most people still experience a one-size-fits-all model of care that is not geared towards people's individual needs. Councils are at an early stage in transforming social care, and developments are patchy and vary between different groups of people. There are different understandings of—and levels of commitment to—personalisation by councils, partner agencies, people who use services and carers, as well as difficulties in extending pilot schemes. Those with multiple and complex needs continue to have little, if any, choice about their care. While the number on direct payments has grown, the number of people benefiting from individual budgets remains only 10,000—of whom a fifth live in Oldham, a pioneer in this field. This should be a signal that the time for pottering is over. We need to commit to reform or risk losing momentum and seeing personalisation poorly and patchily implemented. As we have already heard, another risk is the unacceptable strain that is placed on families affected by disability the longer that the current situation persists. Another recent CSCI report found that disabled parents and their children often receive fragmented and inadequate support. Few councils are achieving the right balance between supporting disabled parents and supporting children who help look after their disabled parents. Less than a third have developed any kind of joint protocol to clarify responsibilities within the council and with other partner agencies. We know all too well the costs of not supporting families. Look at the Disabled Persons (Independent Living) Bill, and you will find measures that would clarify disabled parents' support entitlements, end fragmentation and mandate the joint protocols required to meet the needs of families in a holistic way. More generally, there are hundreds of thousands of disabled and older people effectively abandoned by the social care system and abandoned by the health system too. What is their lot? They may be forced to rely on informal family care if they are lucky, but at huge social cost to themselves and to the carers forced to give up their jobs or their own mental and physical health. Deprived of practical support, thousands will see their dignity and independence slowly slip away until such time as their lives are at risk and costly acute care is the only option. We could end this hardship and deprivation by redirecting resources away from dependency services and bureaucracy into a support framework that boosts independence, employability, social mobility and participation, reaping major long-term economic benefits. We need to grasp the opportunity provided by the Bill. In a general election in one year's time, disabled and older people will deliver their verdict on their satisfaction with progress so far. More than 11 million people is an electorate worth wooing. I should like us to be in a position to demonstrate that fundamental transformation and delivery on independent living is an imminent reality rather than a distant dream.