My Lords, I thank the noble Baroness, Lady Massey of Darwen, for asking this Question. The interest of your Lordships will, I hope, filter down to some of the families with profoundly disabled children who may feel isolated, frustrated, let down and at breaking point if they are not receiving adequate help and, even worse, if the promised help does not turn up.
The Barnardo's report has highlighted the extra expense of bringing up a disabled child and has given several cases as examples. A week ago on Sunday, "Panorama" highlighted some of the desperate struggles some families with profoundly disabled children were having and cited Oxford county council as one authority which cut services.
When a diagnosis of disability is made the reaction of parents is often one of disappointment. Some families have a wonderful way of coping and caring while others cannot manage and give up the struggle. Many mothers with disabled children would love to go out to work and would be better for it. But so often people will not take the responsibility of helping to look after a disabled child, so the parent can be tied 24 hours a day, seven days a week.
I know a couple who have three children. One has a heart problem and has had operations, with more to come. He is a floppy child and has a statement at school. There are other disabled children at the school who do not have statements so the school uses his statement to help them, thus diluting the help he should have. Surely, if those children need extra help they should also have statements. The parents of the little boy do not want to become unpopular, so nothing is said. Assessment of the needs of children with a variety of disabilities can take a long time. There is often a lack of occupational therapists: they go on leave, get married or leave the country. What I find sad in the case of this little boy is that his two brothers are asked to parties but he is not. That is another way of missing out.
A disabled child's shopping list may be very long: suitable housing; extra clothing and bedding; special food; childcare; suitable holidays; speech and physiotherapy; and special equipment. But kind and understanding attitudes to a disabled child and the family can make all the difference in helping to overcome the many problems which do and will arise.
Why is it such a struggle to access the appropriate help for individual children—whether for special help at a school for dyslexic children or with the choice of many special pieces of equipment which may not be available on the national health? There are so many things which disabled children need. Sometimes obtaining specialised medical help can mean travelling a long way to a specialised hospital unit, involving extra cost, strain and stress on the family and the siblings. There are sometimes charitable funds for travel to hospital but that help is patchy and often not available or unknown.
I hope that this short debate will highlight some of those needs. I am sure the Minister will do her best to help with this worthwhile and urgent matter of disabled children and their families.