Disabled Persons (Independent Living)Bill [HL]

My Lords, it is a great pleasure and privilege to follow the noble Lord, Lord Ashley, in speaking on the Bill. I preface my remarks by saying what a visionary and important Bill it is. As in previous years, he is leading where others, and I hope the Government, will surely follow. I want to explain briefly why I believe that this is such an important Bill. First, I declare an interest. I am the chairman of trustees of an education charity for profoundly autistic children which runs a school in Haringey. That will form the core of my remarks today. I am also the vice-chairman of the All-Party Group on Autism, which the noble Lord, Lord Ashley, addressed on Wednesday. I did not realise at the time that he was putting forward his Bill today, but I was so impressed by what he had to say, as was the audience, that I felt compelled to come along to express my support for it. The Bill is so important for our children at the school because currently we have about 40 children in its primary-school element; gradually, however, we are filling up a secondary school, which will be equivalent in number. We have 10 secondary schoolchildren; over time, as we build new facilities with the help of Futurebuilders and many major donors, which we hope will be completed in 2008, we will have a school of 80 profoundly autistic children—40 in the secondary school and 40 in the primary school. One of the big challenges for us as those children enter the secondary school is the curriculum. What are we teaching them? Essentially, in the years as they move towards adulthood, we will be teaching them life schools—the skills which will enable them to live independently, as far as possible, in the community. We are developing a curriculum suitable for their needs, but life skills and independent living are crucial. That is our challenge and it is faced by huge and growing numbers of children across the country. In her study, reported in the Lancet, Professor Gillian Baird of Guy’s and St Thomas’ NHS Foundation Trust confirmed what we have long suspected. The incidence of children with conditions on the autistic spectrum are very high—one in 100. That means that in the future we will be facing large numbers of adults who are on that spectrum. Diagnosis is better and I suspect that there are also environmental reasons. But at the moment, large numbers of adults are hidden. They are not being diagnosed with autistic spectrum disorders, but that will not be the case in the future. We must make sure that those children are able to make the transition from childhood to adulthood and that they are properly assessed so that they can live, as far as possible, independently in the community. That is where the Bill is so important. That is the essence of my strong support for the Bill. Currently, under legislation, there is a real concern for children. It is likened by some voluntary organisations in the sector to falling off a cliff—when children start reaching adulthood, their supportive or structured school environment is followed by a complete absence of services and support. That is deeply worrying for many of these children, who rely on routine in such an important fashion. Under current education legislation—the Education Act 1996, as amended by the Special Educational Needs and Disability Act 2001—LEAs already have a statutory duty to make and implement a transition plan from the age of 14 for disabled young people. As a result, several agencies should be involved in a young person’s transition to adult services, but too often the parent must act as the central point of contact between the LEA, the primary care trusts, social services and Connexions. The recent make school make sense report by the NAS reveals rather shockingly that adult social services are involved in transition planning in only 17 per cent of cases.That points up the inadequacy of the current arrangements. The oldest children at TreeHouse will shortly need transition planning to begin, so that concentrates our minds in a major way. We must ensure that every LEA is committed to effective planning and that all the other agencies get involved early, so that adult services that meet each young person’s needs can be arranged. That is why the clause on co-operation between local authorities and NHS bodies is so absolutely crucial. The Bill takes the whole of that process a stage further and would have a major effect on planning for that transition. Generally, I am wholly supportive of the Bill. I have only one concern, about individual budgets. I hope that these proposals are taken forward giving the option of individual budgets. In many ways, in many areas, that would be welcomed by disabled adults. But there are parents who will be concerned if they have to manage individual children’s budgets; that is one option given in the Bill. I am sure that the noble Lord would accept that some parents would prefer the agencies to manage those budgets for themselves. It is important, too, that individual budgets do not replace direct service provision by public agencies. Of course, that will continue. Not all parents will want to manage the budget for their child’s services, and support services need to be in place to ensure that it is not only those parents with high levels of financial skill and expertise who can benefit from individual budgets. However, that is a very small point that I am sure the noble Lord is aware of, and I strongly and warmly commend and support the Bill.