Disabled Persons (Independent Living) Bill [HL]

My Lords, I, too, thank the noble Lord, Lord Ashley, for introducing this Bill for a third time and I thoroughly endorse all the warm words that have been said about him around the Chamber. We are discussing the Bill against the backdrop of the Government’s Independent Living report, published a year ago, as mentioned by the noble Baroness, Lady Wilkins, which has the sub-title, "A cross-government strategy about independent living for disabled people". This is an admirable document—I am surprised that it has not been mentioned more—no doubt because of the predominance of disabled people who were on the expert panel supporting the review, chaired by the noble Baroness, Lady Campbell. However, I do not think that there has been a change in the Government’s position, which presumably is that the Bill is not needed because the Government envisage this strategy being put in place over the next five years. So why are campaigners, such as the noble Baroness, Lady Campbell, and others, who have done so much to take this whole agenda forward, so sure that the Government need to legislate? Perhaps there is a clue in the number of times that the following phrase is found in the Government’s strategy document: ""We acknowledge that there is a gap between national policy and people’s real experiences. This Strategy will begin to fill this gap"." That is in the Executive Summary. Then, on page 21 under the heading "Consultation on implementation of the Strategy and the involvement of disabled people", we find point 15: ""Disabled people have told us there is too big a gap between national policy aims and local implementation. They also told us that they should be involved in both the development and the implementation of policies which affect their lives and services which aim to meet their needs. We are consulting on how to do this"." Finally, on page 93, point one is: ""One of the clearest messages from disabled people during the course of the Independent Living Review has been that there is a significant gap between national policy aims and local implementation. In other words, the lived experiences of disabled people, (including older disabled people), are too often too far removed from the Government’s vision and policy aims"." That is why this Bill is needed, whatever the Government’s vision and policy aims. There is a long way to go yet, and the noble Lord, Lord Rix, spoke about this very same point. Many Peers have spoken of the way that the system is not responding to the needs of disabled people. Seven out of 10 disabled people get support only if their needs are "critical or substantial", and no fewer than 80 per cent of councils plan to tighten eligibility criteria further this year, resulting in further cuts in support services for more disabled people. As for children’s services, a staggering 77 per cent of families with severely disabled children report unmet needs for community equipment and help with basic personal services. Another horrifying statistic unearthed by Barnado’s is that 175,000 children and young people have to provide daily care and support for disabled parents. No one should blame those parents for the work that their children have to do; it is the system that is letting them down. All these figures are likely to go up as the proportion of elderly and disabled people goes up relative to the population. Now is the time for disabled people to have their support safeguarded in a legislative framework, such as this Bill provides. As many others have mentioned, one of its most important provisions is that there would be a single assessment process for a person’s individual budget to access joint funding streams. As RADAR says: ""Pooled funds are required here as without them multiple assessments, delay and fragmentation would continue to be the norm and the full benefits of individual budgets would be hard to deliver"." One of the most important provisions of the Bill is the right to advocacy, as the noble Baroness, Lady Campbell, said, or support from a nominated friend, together with community support and other forms of advice and assistance in relation to the assessment process. This is absolutely crucial, as it will enable disabled people to make considered decisions about how they want their support arranged and delivered. The Muscular Dystrophy Campaign, of which I declare an interest as a vice-president, recently conducted a patient survey in which it found that three out of four patients and their families have no access to a key worker or care co-ordinator and that they lack support and information, which are crucial in enabling a disabled person even to start looking at independent living. Under Clause 12, both these matters would be addressed. The survey also found that 60 per cent of patients rated their transition from childhood to adult services as either poor or very poor. Essential services, such as physiotherapy, are often immediately withdrawn for teenagers between the ages of 16 and 18, and the families then experience multiple assessments and a lack of forward-planning. This matter is directly addressed in the Bill under Clause 9, which states: ""An independent living strategy prepared under this section shall also include … specific measures to improve the transition ""between children’s and adult services for disabled persons and to improve joint working between children’s and adult services to support families affected by disability"." I turn back to the survey, which found that 60 per cent of families are not satisfied with the amount and clarity of information available to them, while three out of four carers lack any respite support, and half of those with muscular dystrophy do not see a physiotherapist. All these matters are addressed in the Bill. Two other matters mentioned by respondents to the Muscular Dystrophy Campaign’s survey are also mentioned in the Bill and are extremely important. They are, first, the portability of care packages, which would end the difficulties faced by people with complex needs, including those with muscle disease, when they move home and have to negotiate from scratch the support to which they are entitled. This is a particular problem with young people who want to go to university—a matter that I shall come back to in a moment. The second matter, which is vital in the Bill and resonates with all those who have mobility problems, is building standards. I endorse everything that the noble Lord, Lord Best, said in a most powerful contribution. Minimum accessible building standards will make a huge impact in reducing the need for major adaptations in homes, which can be very expensive, time-consuming and stressful for the families involved. I am amazed at how unstandardised basic facilities for disabled people are, such as disabled lavatories, particularly in hotels. In parenthesis, perhaps I may also rail against the lack of rails by steps in hotels, particularly hotels which have no ramp and no lift. Hotels sometimes blame English Heritage, but I am told by an architect friend that there is nearly always a way around this kind of access problem. Coming back to the difficulties that young people face when they are contemplating leaving home for the first time to go to university, I shall briefly tell the tale of a young man with Duchenne muscular dystrophy, whose experience shows why there is such a long way to go before an independent living strategy is truly in place. This young man, who lives in the Lake District with his parents, found the perfect university not far from his home, with a course which was just what he wanted. He started the ball rolling a year before he was due to start and found the inclusion team at the university very helpful. He held many meetings with his social worker, and care agency and all seemed to go well. But the people involved had simply not been listening to what the young man told them about the adaptations and the care that he needed, despite reassurances that they knew all about his condition. Nor had the university facilitators taken on board that they could not overload his timetable because of his need to rest. The final straw was the lack of enough funding from social services for all the care that the young man needed. In the end, he was not able to go to university and ended up back at home with his parents. That contrasts starkly with the experiences we hear about of young people with the same condition in Scandinavia, where independent living for disabled people is taken for granted and where many young people with severe disabilities are able to enjoy their time at university away from their parents with their peer group. In order to be even-handed, I will also report a more cheerful story in this country. A man in his 40s with spinal muscular atrophy type 2 spent more than 10 years trying to get out of a residential care home. He was going round in circles because, without a house, he could not apply for a care package or certain benefits and, without those care packages, he could not get a house. About five years ago, he finally succeeded. He is now very happy and managing well with a team of about six staff working around the clock. I do not propose to go through all the provisions of the Bill, tempting as that is. It is comprehensive in its coverage, for example, of the rights of those with mental health problems, the portability of support, and the importance of accessible housing, as I have already mentioned. Many important questions have been put to the Minister and I am sure we are all looking forward to her reply. One thing that worries me is that the Government are very good at the well intentioned language surrounding the whole world of disability but we must ensure that concrete, practical proposals are not buried under a huge superstructure of concepts, warm statements and catchy slogans, which sound wonderful but do not amount to a row of beans unless they really are carried through to practical implementation. I wish the Bill well and congratulate all those who have helped to draw it up.