Disabled Young People (Support)

Stephen Lloyd Excerpts

Wednesday 7th September 2011 Westminster Hall

[Stephen Lloyd (Eastbourne) (LD)]

It is a privilege to serve under your chairmanship, Mr Hollobone. I am delighted to have secured this debate on support for disabled young people. I have called for this debate today because I have had serious concerns for some time about the inadequate transitional arrangements for many disabled children, particularly those with learning disabilities in the key period from childhood to adulthood. Having spoken to a number of disability charities such as Mencap and the National Autistic Society, as well as others, it is clear that problems with transition, as many of us in the Chamber know, have been going on for many years. I wished to secure the debate so that the Minister could reassure me that the coalition Government understand that there is a problem with transition and can outline how they propose to tackle that problem.

I should like to outline the common challenges that many parents of disabled children, and the young men and women themselves, experience once they are over the age of 17 or, in some cases, 16. Preparation for adulthood is a time of challenge and celebration for all young people, but for disabled young people, more often than not, it is a time of particular challenges. The Transition Support Programme and the wider Aiming High for Disabled Children programme, 2008-2011, resulted in improved consistency of support to young people and families across the country, including greater expectations that disabled young people would achieve their goals for adult life, so I am disappointed that those programmes are no longer running and would welcome the Minister’s comments on what will replace them.

As many hon. Members know from their postbags, parents of disabled people have to deal with numerous statutory services, from local councils in relation to disability access and provision in the home, to social services with regard to helping them to manage and providing respite care. Parents often have a great deal of contact with the local hospital or NHS to help the family with whatever the disability may be, particularly if it is a profound disability. For each disabled child, there is supposed to be a social worker who helps to co-ordinate all the different services. However, that key worker service ceases once the child reaches adulthood—if they were fortunate enough to have had a key worker.

Tussie Myerson, who contacted my office to share her daughter’s story, told me about one such case. Her daughter Emmy is 20 and profoundly disabled. Incidentally, Emmy’s story was first told in Parliament eight years ago, when the right hon. Member for Witney (Mr Cameron) was her MP. Since then, regretfully, her story has not much improved. Emmy, and her mother and father, have not had contact with a social worker for six years and have never had any contact with a key worker or benefited from any transition arrangements.

In 2006, the National Autistic Society surveyed its members on their experience of transition. It found that only 53% of young people with statements received transition plans during the course of their education, with the figure falling to 34% of students in mainstream schools—and that is a legal obligation. Unsurprisingly, 45% of those who participated in transition planning were dissatisfied with the whole process. One issue has crept up again and again as I have delved into the provision of support for young disabled people: the lack of—forgive the cliché—joined up, co-ordinated provision and a failure to share best practice between different authorities, leaving many parents to feel that the transition is something of a postcode lottery.

Emmy also had the misfortune of moving from one local authority to another, which her mother deemed to be a fiasco, to put it mildly. Emmy is now in her eighth year of legal wrangling with the local authority. She receives legal aid. I dread to think what the total cost of her legal fees might be, not to mention those of the local authority, but I am certain that without legal aid Emmy and her parents would not have been able to fight her case.

That is just one example. There are plenty more like it. When we get it wrong, disabled people suffer, their families suffer and, sadly, it can and does often lead up to the break-up of families.

[Mark Tami (Alyn and Deeside) (Lab)]

I, too, have had parents of disabled children come to see me. It puts a terrible stress on them. Parents worry very much about the future. They do not know what the future holds for their child, particularly when they are no longer with us.

[Stephen Lloyd]

I agree. Sometimes the parents split due to the sheer strain—and not just of looking after a severely disabled child, which is a challenge, no matter how much the parents love them. The situation often leads to irrevocable strain between parents, which is one of the saddest things that I have seen. Like all hon. Members, I have seen a lot of desperate cases. Often, the reason why parents split up is because statutory authorities, though they often try to be helpful, are clunky, and lack consideration and co-ordination. That, as I will go on to explain, makes it much worse. It also costs a great deal of money for the family, local authorities and all the agencies. It is therefore imperative, particularly for disabled children going into transition, that we get it right first time. I am sure that the Minister and hon. Members can appreciate how complex and challenging such a scenario must be for both the disabled young adult and the parents.

I have been liaising for the debate with Mencap, which has been very helpful and supportive. It has put together a document that defines what a good transition must look like. In its view, which I share, it is defined by three stages: planning, process and destination. To be a successful transition, each stage must be followed effectively and, most importantly, tailored to the individual, but there are general principles that can be applied to each stage. It is recognised that all young people should be at the centre of their transition planning—that is incredibly obvious. That is important for parents, uncles and aunts, and children without disability, but is doubly important when working with a disabled young adult. For young people with a learning disability, a plan will be achieved only if it is timely, accessible and diverse. To be ready for the start of their transition, young people should be encouraged to think about their options in year 8, so that they are adequately prepared for their review in year 9. In the run-up to and following their review, young people should have access to appropriate information about their rights and their options regarding their future. Ideally, the options presented to young disabled adults should be limitless. For all of us and for all disabled children, transition should be an exciting time for exploration, not a restricted choice of a predefined future.

No particular Governments or Government are at fault here; this has been a challenge for a long time. Even well before I was elected, I had people in my constituency come to see me who were absolutely petrified because their child was getting to the end of teenagedom and going into young adulthood. They knew that the key worker was going and that the services that supposedly, and often do, come automatically with young disabled children would disappear. It is no exaggeration to say that they were petrified.

If choice is to be at the heart of young people’s transition, it is crucial that they be given the opportunity to explore their aspirations with the aim of reaching their potential. For young disabled people to have such aspirations, those around them must be aiming to achieve the highest quality of life for them. None of that is complicated or different—it is exactly the same for non-disabled young adults as for those who are disabled.

Throughout a young person’s transition, the process should be co-ordinated and resourced. Although young disabled adults must be the director of their transition journey, it is crucial that the services supporting them be aware of each other’s role in the process. The position of key worker for a young disabled adult is therefore vital, to keep all the professionals in the loop. Obviously, within that, it is about working very closely with the parents of someone who has a profound learning disability, because as well as the work done with the young disabled adult, the parents are best suited to help and guide the child to decide what is best. Often, profound learning disability is accompanied by communication challenges.

For each service to play its part, adequate resources must be provided, mainly that of time. Each professional involved must be prepared to work alongside the young person regularly, to offer support and advice. The transition process should, however, be as unobtrusive as possible, to allow the young disabled person to enjoy as best as possible an ordinary teenhood.

[Jim Shannon (Strangford) (DUP)]

I am sure that the hon. Gentleman and many others in the House are aware of the good work of some voluntary organisations, such as the Prince’s Trust, which I have visited and where I have spoken to some of the young people. Clearly, organisations out there are giving of their effort, time and commitment to help young people. Does he feel that the work of the Prince’s Trust ought to be recognised and complimented in this Chamber today?

--- Later in debate ---

[Stephen Lloyd]

I agree totally. The Prince’s Trust does outstanding work in this area throughout the United Kingdom. I am delighted to add that compliment into Hansard. The Prince’s Trust does a fantastic job.

The final stage, which is the destination, is the most important. Young people’s quality of life, as does everyone’s, depends on satisfaction with their destination and opportunity to thrive in the future. The best outcome of a transition is for the young people to be living in a place that they have chosen and to be doing what they want to do, with the support that is right for them. If the transition planning and process are followed in the way that Mencap describes and that I have been delighted to outline, in our view the outcome can be expected to be positive.

On other challenges with older disabled children or young disabled adults, a report published by Ofsted last month has highlighted some significant failings in the system. Too many children in further education with disabilities are failing to gain the qualifications needed to get a job or to continue with their education. The report also highlights the reduced support available once such individuals reach 19, which means that they are often burdened with insufficient advice about personal budgets, the requirement to pay fees and uncertainty about benefits entitlement. In fact, a recent study reported that in 2009 an estimated 30% of young people who had a statement of special educational needs when they were in year 11 and 22% of young people with a declared disability were not in any form of education, employment or training when they reached the age of 18, compared with 13% of their peers. Current figures from the labour force survey for the first quarter of 2011 show that 41% of men and 43% of women designated longer-term disabled were economically inactive. Surely such a high figure historically shows that little progress has been made in recent years. It is time that we all do more to do better by our young disabled fellow citizens.

Although since 2008 local authorities have been required to carry out multi-agency assessments for pupils with statements of need or in receipt of support before their transition to a post-16 provider, inspectors found that those arrangements were not working effectively. Providers had received a completed learning difficulty assessment in only a third of the case studies in which one should have been made available.

[Kate Green (Stretford and Urmston) (Lab)]

I am delighted that the hon. Gentleman secured this important debate. Does he agree that there also is a problem earlier in the process, in the through-planning as children move from primary to secondary school? The assessments often take place after the child has arrived in secondary school, rather than in advance to enable preparation to be made for it.

[Stephen Lloyd]

Yes, I agree. I will touch on what the Green Paper says about SEN, but the problem that the hon. Lady raises is clearly of long standing.

The learning difficulty assessments were found to be not always timely or adequately completed, and did not form a reliable basis on which to plan support or an appropriate programme of learning. The transition at age 19 from children’s to adult services, and from the Young People’s Learning Agency to the Skills Funding Agency, created barriers for learners when they encountered different criteria for funding. Learners and their parents or carers identified that they would have welcomed more advice and careers guidance when they received a personal budget for purchasing a learning programme, care and support.

I am conscious, as I am sure the Minister is, that I am covering a range of responsibilities which is perhaps broader than her remit, but that is the reality of disability, in particular in the transition for disabled children or young adults, because so many different areas of Government and statutory services are touched. As I was drafting my speech, I half envisaged five different Ministers from the different Departments attending today because the subject covers such a wide area, but somehow I knew, even with my delusions of grandeur, that that would be unlikely.

Too little is known about the destinations of learners once they leave post-16 provision. A more systematic national approach to the collection and analysis of data about learners’ destinations would help to ensure that limited public resources were deployed effectively to support learners in making a successful transition to adult life.

Finally, I come to the Government’s proposed welfare changes, such as the transfer from the disability living allowance to the personal independence payment and the reforms to housing benefit. I am a member of the Select Committee on Work and Pensions—I am delighted to see some colleagues are present—and I support the direction of travel of many of the changes being proposed by the Department for Work and Pensions, in particular the Work programme. We are discussing young adults and children, but about 2 million children today are growing up in households in which no one works. That is a national scandal which I hope that the Work programme will address rationally and productively—I think that it is doing so.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining the debate. Many of us in the Chamber have in our constituencies special needs schools and schools dealing with children who have disabilities and learning difficulties, and I agree entirely with what he said about the dearth of activity for young people with special needs post-16 and post-19. He mentioned multi-agency work to help those young people, but does he agree that the CBI, the Federation of Small Businesses and their like should be encouraging their members to employ young people who might have learning difficulties or some form of disability?

[Stephen Lloyd]

I thank the hon. Gentleman for making that important point, which I will discuss when I talk about the Work programme and the black box principle, which I am excited about. Having been in business for many years before coming into politics, I passionately support more businesses employing and recruiting disabled people, because more often than not they are very good employees, but I am conscious that because many small businesses lack understanding of disability, they often will not let disabled people through the door, irrespective of the Disability Discrimination Act 1995.

[Mark Tami]

The hon. Gentleman makes a crucial point. Many employees make assumptions that disabled young people are capable of doing only certain jobs. That is wrong, and is a particular problem when dealing with mental health issues. Many employers make assumptions and do not want to employ such people.

[Stephen Lloyd]

I thank the hon. Gentleman for his intervention. Again, he makes a good point about mental health, which still causes fear in people. As vice-chair of the all-party parliamentary group on mental health and having grown up with a mother who had bipolar disorder, I have experience of and am familiar with mental health issues. I know that they may be a real challenge, but I also know that anxiety, fear and lack of understanding on the part of many people stop many of their fellow citizens contributing very effectively in jobs. Most people with mental health incapacity manage their incapacity.

The challenge of persuading the Federation of Small Businesses, the CBI and so on to take on more disabled people needs a push, and it will be underpinned by the Work programme. Some specialist small charities and training companies understand mental health and learning disability, and part of the opportunity of the black box principle and the Work programme is that there should be enough money for those smaller organisations to engage with local employers to help to break down that barrier. I would like the major trade associations to take more responsibility and to step up to the plate. I would like them to make a commitment. I am a parliamentary champion of the FSB, and I have a meeting with it tomorrow when I shall remind it of that. I appreciate the hon. Gentleman’s intervention.

I have specific concerns about the welfare changes involving young adults and children, and the change from disability living allowance to personal independence payment. I shall be grateful if the Minister puts them to rest. The Government have stated clearly that they intend initially to migrate working-age people to the new PIP, which means that until all age groups are migrated on to PIP, there will be two very different benefit systems for disabled people. The Every Disabled Child Matters campaign group, with which I have worked closely, is calling for under-16s not to be brought on to the PIP system before full public consultation and analysis of how the new system works for over-16s has taken place.

Although I welcome the Government’s decision to have a different commencement date for children and working-age adults on PIP, I share with the Every Disabled Child Matters campaign group its concern about the impact that the two systems may have on disabled young people who turn 16 in 2013. We are both concerned that the migration to PIP may result in those disabled young people testing out the new system. The Minister has responded to such inquiries in the House, but to my knowledge she has yet to give a firm acknowledgement that young people turning 16 in 2013 will not be the first to go through the new assessment. I shall be grateful if she provides an update.

That brings me to the proposed benefit cap and changes to housing benefit. We all want an end to taxpayers having to foot the bill for some of the absurd and astronomical rents for some families living on housing benefit. I do not have a problem with the broad thrust of that narrative, but we must be careful about unintended, disproportionate and unfair changes to the circumstances of disabled people and their families. The changes to the shared-room rate and the implementation of an overall cap on housing benefit cause me concern in relation to young disabled adults. Let me explain why.

The Government propose to increase the age limit for the shared-room rate from 25 to 35, so single people without children aged up to 35 and claiming housing benefit will be restricted to the rate for a single room in a shared house, instead of the rate for a self-contained, one-bedroom property. I shall give an example of why that causes me concern from the disability perspective. The disability of someone with high-functioning Asperger's syndrome—autism—more often than not makes it very difficult for them to share with strangers. A constituent who is a tremendous volunteer, and who helped me during the election by delivering Lord knows how many leaflets, has high-functioning Asperger’s syndrome and finds it difficult to go into a room where there are people he does not know—let alone to share a house with people he does not know, which the benefit changes may lead to. He struggles to go into a room where there are people he does not know, and frankly he will not unless I am right next to him. The Government’s proposal is a real problem for those with some disabilities, and I ask the Minister to take that on board.

[David Simpson]

The hon. Gentleman said that there will be two systems for disabled young people or people with disabilities, but my understanding is that by 2013 there will be one universal benefit. Will he please clarify that?

[Stephen Lloyd]

I am seeking clarification from the Minister on that point, which I thank the hon. Gentleman for raising. On the one hand, we have been told that there will be one universal system from 2013, but on the other, the Minister has said in the House that she understands that there may be a problem, and my understanding is that she will return with clarification. I too am a little confused, but I am cunningly fleshing it out—at least, that is the plan.

I emphasise that the equality impact assessment of a benefit cap shows that approximately 50,000 households, approximately half of which have a disabled member, stand to receive lower benefit payments. The Minister knows that I have general concerns about some of the housing benefit changes, but today I am focusing on the disability perspective, because I believe that if the changes are handled incorrectly, they could be catastrophic for some young disabled adults and their families. Some 52% of families with a disabled child are at risk of experiencing poverty. With more than 40% of disabled people aged 16 to 24 already living in accommodation that does not meet their needs—there is a long history to the problem—we must be careful of any resettlement as a result of a cap on housing benefit and an overall cap on benefits that disproportionately affect young disabled adults.

The SEN and disability Green Paper has been heralded by many who are hopeful of developing a more transparent, less conflict-ridden and more family-friendly system of support that gives parents a greater say in decision-making processes. I am hopeful that the White Paper will set out detailed proposals for radical legislative and policy changes. I mention the Green Paper because I think it contains some good and progressive potential protocols. I urge the Minister to continue to work closely with my hon. Friend the Minister of State, Department for Education (Sarah Teather), who is leading on that Green Paper. Disability never affects one Department, but involves a range of statutory bodies.

The Government have taken some positive steps, which I applaud. I have already mentioned the Work programme and emphasise that I am keen on the funding model, with its inherent black box principle. Over the years, I have worked with many disabled people. I know that too many large companies do not really understand disability and that the best people to work with young disabled people and help them to get into jobs are often specific groups and organisations, such as the Prince’s Trust, that not only understand disability but have a passion to make things better. The principle behind the Work programme and its funding is that much of the money and many of the resources should be downstreamed from prime providers to subcontractors which have a greater understanding of disability. I am hopeful that that approach will work.

I remind the Minister of what I said at the start of my speech about the main thrust of my anxieties. The system for the transition from childhood to the cusp of young adulthood is inadequate and has been for many years; support for young people on that cusp is poor, lacks joined-up thinking and provision for teenagers. I am also concerned about possible unintended consequence of changes to the welfare programme disproportionately affecting young disabled people. I am grateful to the Minister for listening to my remarks. I am aware that her Department has to cover a wide range of issues, and I look forward to her response.

[Mr Philip Hollobone (in the Chair)]

Three hon. Members are standing up—a wealth of talent before me. I want to begin the winding-up speeches no later than 10.40 am. Three people wish to speak, so you can work that out and will all get a reasonable amount of time if you are fair to one another.

[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.