Disabled Young People (Support)

Sheila Gilmore Excerpts

Wednesday 7th September 2011 Westminster Hall

[Sheila Gilmore (Edinburgh East) (Lab)]

I thank the hon. Member for Eastbourne (Stephen Lloyd) for securing this debate because the issue is important. I do not intend to speak at length, but I want to touch on some issues that have come to me as constituency problems. They concern individuals but show some areas of policy where the situation could be improved. One issue concerned a young disabled lad who had just left his special school. He had stayed in that school until he was nearly 20, but to be honest he would probably be described as a three-year-old in a 20-year-old’s body. In many ways he is very happy and friendly, but he has no language. He suffers from Down’s syndrome and is severely autistic so his capacity is obviously limited. I am not an expert, but on meeting him and his mother I could quickly tell that the likelihood of someone like him being able to consider any form of employment was no more probable than my three-year-old grandchild entering employment.

The specific issue raised was his mother’s great concern about what had happened as soon as her son left his special school. When I first saw her, she was in the midst of filling in a form for employment and support allowance—she had to fill that in because he clearly could not, and she found it quite difficult. She also made inquiries to the Department about the possibility of a face-to-face assessment she had been told about. When she made contact, she was told that there were no exceptions, that there would have to be a face-to-face assessment, and that she would have to bring in her son. She explained that one aspect of his condition means that he finds it difficult to go into strange places, to the extent that even with all her powers and being used to the situation, she sometimes cannot make him do it.

As it turned out, I am glad to say that, on the basis of the forms and medical report it received, the DWP decided to award employment and support allowance in the support group without a face-to-face assessment. However, the family—the mother in particular—suffered unnecessary stress because of information she had received previously when her son’s circumstances were not fully taken into account. It occurred to me that such cases could be dealt with more quickly and effectively, and with less stress, if the DWP undertook outreach work in schools where young people are about to leave that form of education. The Department could have carried out its assessment quickly and easily within the school setting because nobody, other than his mother, knew better of what that young man was capable than the school. A great deal of stress and time would have been saved, especially had other forms of appeal become necessary. That is a matter of process where, with a little thought, a more humane system could be adopted.

That young man currently receives DLA, but when we look at the transition that will be made from DLA to the personal independence payment, we must think about the processes involved and the fact that we do not necessarily need to put everybody through a complex process if it is manifestly unnecessary. However much the Minister may feel that it would be useful for many people to go through such a system, there will be some cases in which, on anybody’s analysis, that should not be required. I urge her to give that issue some special thought before we get embroiled in the system and people are given conflicting messages about what is likely to happen. Even at the point of applying for ESA, my constituent was given certain information over the phone by officers in the DWP that increased her stress levels considerably.

Another minor aspect that my constituent raised—I accept this is not new and has been in the system for some time—was the financial position in which the family found themselves. That is obviously an important issue when it comes to purchasing the additional help and assistance that is often necessary outwith the local authority care package. Because my constituent’s son has been placed in a support group, once the first 13 weeks are up, a non-dependant charge will be placed on his mother in respect of housing benefit. She is over 60 and retired, but I think that even in earlier years she found it difficult to remain in employment, given her son’s condition.

At the moment, her son is on the lower rate of ESA because it is still within the 13-week assessment period, although it has been agreed that he will move into the support group and receive the higher rate of ESA. At the end of that period, he will be regarded as a non-dependant, and his mother’s housing benefit and the finances available to the family will in effect be reduced. Since the higher rate of ESA is supposed to meet a family’s additional needs, it seems somewhat perverse to take that support away because the mother is over retirement age, even if she is not working. I accept that that situation is not new, but it is perhaps something we should look at if we seek to improve the situation for families.

The mother said something else that I felt was worth pursuing. She has done a little research on this issue and talked to other people. She felt that, when her son suddenly became an adult for the system, the attitudes towards him and her suddenly became more difficult. That was not just about the benefits issues. She gave me another example. He has been given a care package and a place at a day centre and she was trying to get him used to the idea of that. He had been at a very good special school in Edinburgh, but the day centre is obviously a completely different environment. He was to have transport to go there but, given his particular difficulties with strangers, she asked whether he would have an opportunity to meet beforehand the person who would be doing the transportation. She was told, “No, because he is now an adult.” When he was a child and his arrangements changed, that opportunity was always given, but now she was just told, “No. Under the adult system, we don’t do that sort of thing.”

[Stephen Lloyd]

I thank the hon. Lady for making an incredibly powerful point about disability. The system does not appreciate that, for many disabled people, the nature of their disability means that in terms of age they may be an adult, but in terms of intellectual capacity and their ability to manage things, they are not. The system cannot cope with that. It is a very strong point. Does she agree that more needs to be done and understood in that area?

[Sheila Gilmore]

I certainly do agree, which is why I was trying to bring out that point. Sometimes there are unintended consequences from the important breakthrough whereby a lot of people with disabilities started to be treated as people with the right to make their own decisions and as an adult, like any other adult. Many people had been campaigning for that for a long time, and for many disabled people it has been a huge breakthrough and beneficial, but there are some people—my constituent and others whom I have come into contact with would fall into this category—for whom it does not work. All it does as far as the family is concerned is make life slightly more difficult. They do not see any purpose in it. Sadly, the young man to whom I have been referring will never grow into adulthood in that sense. Nothing in the field of medicine is likely to change that, so his mother felt that that blinkered view—“This is what we do”—was not helpful. It probably originated from something that was intended to be good, but it has turned out to have a downside.

The mother’s suggestion, which I think we should consider, was that there could almost be a separate category when it comes to the way in which people are treated. Her contention was that in some countries that is what happens—there is more understanding of the different nuances of disability and someone like her son is not treated in exactly the same way as other adults. She was keen to say to me that she thought that local government at all levels should be considering that type of option and trying to improve its practice. I know that there will always be difficulties about definitions and about the point at which those distinctions are made, but if we could apply that perspective and it improved the experience of disabled people—in this case, young disabled people—and their families, it would be beneficial.