My Lords, I thank the noble Baroness, Lady Massey, for introducing the debate on behalf of the 360,000 disabled children—100,000 of whom will be severely disabled. This is the group on which I want to focus. These children will survive because of the wonders of modern medicine. They will live longer than their predecessors. Most will live with their families—carers who need and deserve support in their task.
Although we can acknowledge the work of many initiatives in social services—of the specialist teams and the voluntary organisations—we have to remember that it is far from enough. In the words of one of the parents in the recent "Panorama" programme,
"There's no structure to support families like ours, it's a bit like living in a war zone".
To provide such families with the support that they need requires resource planning, sensitive assessment and priority. I am sure that other speakers will talk about these. But those that need expensive care—care which we presently require the parents to deliver—need detailed thought. We seem prepared to give expensive initial medical care. We fight hard to save premature babies. This is vital. But follow-up is equally important in the survival of the families who will then need to care for the children.
As vice-chair of John Grooms, an association dealing with the provision of services for younger disabled adults, I have been chairing an inquiry examining the future needs of these young people. We had to start where the problems begin; namely, with the needs of children in families. We found that there is a serious lack of data on which to plan. There are lots of numbers, but it is unclear as to where they lead. It would help if health and social care could produce easily available information on which plans could be produced for the future.
Unexpectedly, medical science has not reduced the numbers of children born with serious disability. Certainly, the figures for conditions such as spina bifida have fallen. The fall is attributed partly to ante-natal screening and terminations of pregnancy; and over 50 per cent of it is attributed to an increased intake of dietary foliate—I congratulate the Government on their education programmes in this area. We should rejoice that at least 85 per cent of children born with this condition will live into adulthood. But if we add to those the large number of premature babies born each year who would previously have died but will survive and will suffer severe disabilities, we see that planning for the social care of this increasing number of youngsters is imperative.
We all know that the gaps in social care are huge. The Government are working to ensure that plans are in place for early discharge, yet the reality is that families with totally dependent children may have little or no respite or home care support. Can the Minister assure us that, in the pressure to meet other targets, the services available to these families will not be reduced, and that they will not find themselves even lower down the priority list than they are at present?
Voluntary organisations play their part. Perhaps I may briefly mention two small ones. Last year, I visited the PACE centre in Aylesbury, which is developing conductive education for children between six and 12. The staff believe that the most disabled child can learn through daily routines, working on the principle that they will develop. I met parents anxious because at any moment the funding from the local education authority might be withdrawn or their child allocated to other provision for reasons of local budgets. The director, a brilliant teacher of severely disabled children, spends much of her valuable time worrying about funding.
In the few moments I have left I should like to draw attention to a group of families whose children have invisible disabilities. These children look like other children. They are bright and active and their development for the most part goes through normal stages. Their needs are less obvious but no less distressing. They have the complex congenital heart condition, hypoplastic left heart syndrome. The future of this group of youngsters is completely unknown as the eldest surviving child in this country is only 12; one child in the United States is 17. For years these families were isolated by the complexity of the disease and the distances they had to travel to receive treatment. The charity, Left Heart Matters, met those needs. I had the privilege of being invited to become their patron last year. It has been a huge privilege to be with those families, listening to their hopes and dreams for the future—a future which just might not come. But their frustrations are equally great. For many, if they cannot see the disability, it is not there. Schools do not always recognise the needs of these children and benefits are not easy to come by because one cannot see what is happening.
Do the Government have words of encouragement for the many voluntary groups providing the human local care that families can access to survive? Will they encourage both local and central government to include them in their plans? Families should not feel that they are living in a war zone but in a responsive, caring and civilised society. For it is on how we respond to the needs of these families that the quality of our civilisation will be judged.