Disabled Young People (Support)

Steve McCabe Excerpts

Wednesday 7th September 2011 Westminster Hall

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I am pleased to be able to take part in the debate. I congratulate the hon. Member for Eastbourne (Stephen Lloyd) on securing it. We can never devote enough time to the subject in this place.

Like others, I want to begin by asking about the personal independence payment. I have to say that I like the concept of an independence payment, and it sounds attractive. Like others, however, I am not quite sure what it will mean in reality. I do not want to end up with a crude, Orwellian sleight of hand, whereby the word “independence” results in a set of arrangements that mean the exact opposite. I do not say that that is the intention of the Minister or the Government, but I hope she understands the concerns many Members and organisations representing disabled people have about how the provisions will work in practice. Like others, I hope that she will be able to give us a bit more information and that we will be able to secure a promise that she will provide more information to people across the country, because it is important that she does so.

It is important to recognise that having great support needs does not mean that dependence and exclusion are inevitable, but that depends very much on how we choose to approach people and on whether we give the right kind of support—support that facilitates independence and assists those who are trying to help them. In an intervention earlier we heard about the pressure that is sometimes put on parents. I read a recent study looking at young disabled people who seemed to have made quite a success of their lives, in that they had secured employment and found a place to live independently. They highlighted the fact that their parents had been critical in helping them through those different phases. As in many other areas of life, it is true that good parents—parents who provide the right support—are a great help. However, where we are talking about parents who are coping with children with disabilities—often quite severe disabilities—we should never underestimate the pressure they are under, and that was illustrated in the example given by the hon. Member for Eastbourne. We should never underestimate the pressure on parents, how easy it is for one final incident or episode to be the straw that breaks the camel’s back or how insensitive agencies can be at times to the pressures on parents.

I want briefly to mention two groups. The first is young soldiers. I obviously see a lot of young injured service personnel at the Queen Elizabeth hospital in Birmingham. The lives of these young people will be changed beyond all recognition from what they would have anticipated when they joined the services a few years ago. As we think about the support and provision that will be available in future, it is important that we do everything to assist the independence of these people, to whom we already owe an enormous debt, and who have every right to expect to lead a fulfilling and independent life. We can either assist or hinder that process by the way in which we shape the support and services we make available.

The other group is young people with terminal illnesses. In the past, they would tend to die at a relatively young age—perhaps before or in their early teens. Quite often, the support we provided was limited to a bit of hospice provision and a bit of social services or other independent agency provision at critical times in the illness. Nowadays, youngsters with terminal illnesses tend to live much longer, into their early 20s or early adulthood. Like every one else making that transition in life, they have all sorts of demands and expectations, and they want to go to college and have jobs. Quite often, they are capable of doing those things, but they need different kinds of support and services. We need to recognise that there will be an increasing demand for that in the years ahead, so the more we can shape and prepare services now, to cater for those young people, the more we will be able to help them, and the more we will get ahead of the game, rather than playing the traditional game of catch-up.

I want to mention two issues, the first of which is mobility. It seems to me that that is the key to any sense of independence. If someone cannot decide for themselves where to go, when to go there, and how to organise their life to achieve things, their independence is severely restricted. I hope that as the Government think about how to reshape support and benefits, they will think about mobility for young people, particularly those in residential establishments. It is not right, when they are trying to make the transition to adulthood, that they should be dependent on someone else deciding what time they will get to go out socially or visit the shops. They need some degree of independence.

To go back to the issue of parents, it is extraordinary how insensitive agencies can be to the needs of parents and disabled youngsters. Birmingham city council, which is trying to save a bit of money because of the budget predicament—and that is perfectly understandable—recently introduced a proposal to restrict school bus access for children going to special needs schools, subjecting them to the same arrangements as other children. I cannot remember the exact distance now, but I think that they must live further than something like a quarter of a mile away. Of course, the reality is that children going to special needs establishments have special needs. Some of them do not like massive changes and disruption; they need a predictable route. Some of them could not possibly travel by themselves on public transport. It would not be feasible for them to get taxis, because that would cost the local authority more than the existing transport provision. The parents found out about the change through a blanket letter from the council to all parents, informing them of the intention; so of course we had people phoning up in floods of tears, saying “What am I going to do next week?”

That is the kind of thing that came up in the exchange between my hon. Friend the Member for Edinburgh East (Sheila Gilmore) and the hon. Member for Eastbourne: far too often the agencies are inflexible with their rules. They are oblivious to the needs of the population they are trying to serve. I think that perhaps, without any more cost, a bit of Government guidance and direction about the way in which the agencies must perform, both in providing services and when there is any intention of changing them, could make a significant difference.

That brings me to the other issue I want to raise, which is schooling. I am dealing with a situation concerning a young woman in my constituency who is on the far end of the autism spectrum. She has a great deal of personal need. At times she self-harms. She is challenging at home and gets very frustrated; she often attacks her parents and the other children. She is a challenge. Her parents have coped with that for 14 years, as well as bringing up two other children. They have done a remarkable job. However, in the past year, the secondary school that she attends in Birmingham, which is not a special needs school, has decided that it cannot cope with her. It has come to the conclusion that it is not the right place for her.

I do not blame the school for that decision, which is possibly a quite professional one, if those concerned have genuinely looked at the situation and thought about it; but of course the parents need to know that now that that has happened the authorities will take a good, honest look at the situation and come up with a proposal that will serve the needs of that young girl. What they have done instead is to withhold the minutes of the initial meeting that took place; they appear to have edited them to exclude some of the things said at the meeting, and have now come up with a set of proposals insisting that she return to the school—which the school rejects. They are essentially making those decisions on cost grounds; there is no doubt about that. As a result, although other children are back at school this week for the start of the new term, the girl is at home with her mother, who is at the end of her tether. Of course, every time her father must take time off work to try to deal with the crisis, he loses money, which plunges the family further into financial difficulty.

That seems to me not only insensitive but a completely unprofessional, unacceptable and irresponsible way to deal with people. I am happy to discuss the personal details of the case with the Minister. If there is anything that she can do to help I would appreciate it; but generally I want to say that local authorities must be given clearer direction on such issues. I do not think that it is entirely a matter of money. I am aware of the budget pressures that face Birmingham and other authorities; if money is a consideration, so is the way in which people behave, and the way in which they treat those they are there to serve. I do not think that the state of affairs I have described is remotely acceptable.

I thank the hon. Member for Eastbourne for obtaining the debate. I hope that the Minister will respond to some of the issues raised, and that we shall have many more debates like this one, so that we can shape some provision in a way that genuinely reflects the needs of the people we hope to assist.

[Mr Philip Hollobone (in the Chair)]

If the Front Bench speakers split their time, they have about 12 minutes each.