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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?
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.
Kate Green (Stretford and Urmston) (Lab)
It is a pleasure to participate in the debate under your chairmanship, Mr Hollobone. I am also pleased that the Minister responsible for disabled people will respond to it because, as was said by my hon. Friend the Member for Eastbourne (Stephen Lloyd)—I have called him my hon. Friend because we are colleagues on the Select Committee on Work and Pensions and have discussed these matters in that Committee on many occasions—we are covering a very wide ambit of departmental responsibilities in the debate. It is good that the Minister who can draw all those together for us in government will respond to the debate. We are pleased that she is here this morning.
Like the hon. Member for Eastbourne, I want to focus on some of the transition issues. Of course, for disabled young people, transition is quite a protracted process. It begins when they are in their mid-teens and can stretch right through until they are in their mid-20s as they transfer from children’s services to adult services in terms of how the social care package and social support are provided. Like all young people, they may move on from school to a college or higher education setting and, in due course, to employment. During that period, they may also seek to leave the family home and set up on their own. It is important that we consider how we support young people through those transitions economically, as well as through the care packages that they receive.
I am fortunate to have had some extremely helpful briefing from Every Disabled Child Matters, as other hon. Members have, and from the transition support co-ordinator at my local authority. One message that comes through clearly is the need for a planned approach to the transition; it cannot be left to chance. In addition, it is important that that planning begins early and is done with the young person and his or her family. Underlying what I want to get across today is the need to support disabled young people in achieving their aspirations. Too often, our aspirations for those young people, employers’ aspirations for them or even the aspirations of colleges, schools and social services for them are too low.
First, however, I will talk about some of the financial issues and I would be grateful if the Minister addressed them. The hon. Member for Eastbourne has already alluded to the implications of the introduction of the personal independence payment in due course. The Minister was good enough to write to me before the summer recess about the arrangements that will be consulted on in relation to children and young people, who are not currently to migrate immediately on to PIP. I think that at that stage she was saying that no firm plans were in place and there would be wide consultation as plans were developed. I certainly welcome that, but she must understand that there is an awful lot of uncertainty and concern as a result of the process still not being firmly available to people so that they can understand what the Government might be contemplating, and for some young people—for example, a young man I met in my constituency who is on the autistic spectrum—uncertainty is a particular worry. We were told that he already, at the age of 17, was beginning to worry about what the transition would mean for him. I therefore hope that the Minister can give us more information about the process today.
If young people aged 16 to 18 are placed on a benefit, as I accept they are now with DLA, that is identical to what adults receive, how will that be designed appropriately to meet their needs? We are particularly concerned about that. We are also concerned—other hon. Members alluded to this—about the assessment process for young people. In his comments to me, the transition support co-ordinator in Trafford highlighted the fact that young people already go through multiple assessments for different packages of support and benefits. My hon. Friend the Member for Edinburgh East (Sheila Gilmore) has highlighted one way in which we might ease the assessment process, by going to the individual rather than setting up a series of assessment hurdles that they have to come to and cross. It is a very imaginative idea, which I hope the Minister will explore.
I am concerned about another issue. The Minister has indicated in the past that it is not necessarily the case that young people as they turn 16 in 2013 will automatically be migrated on to PIP, but I would like to know what further thinking she has developed in relation to the transition period. Does she envisage a phased transfer of young people on to PIP from DLA? If so, what will the time scale be and who might go first?
The Minister will know that real concerns remain about the situation of children and young people if the extended qualifying period for PIP that is proposed for adults is also applied to them. Children’s conditions develop and change incredibly quickly in some cases. CLIC Sargent has estimated that, if the extended qualifying period for PIP were applied to children and young people, that could lead to nine out of 10 families, and 60% of all its clients, suffering financially.
Mark Tami
It is an important point that CLIC Sargent raises, because the onset of a cancer is very sudden and, although some children react very well to the treatment, some children do not and there is an up-and-down pattern, so it cannot be said that there is a consistent level of requirement for those children. It is therefore very important that the support is in place straight away and particularly when the parents have received that devastating news.
Kate Green
My hon. Friend is absolutely right. As I say, many children’s conditions vary, progress and retreat much more suddenly and rapidly than those of adults. Crucially, children’s educational and social development is also taking place as they grow into young adulthood. If there are concerns about the financial support for children with medical conditions, that will also have wider developmental implications for them.
There is continuing uncertainty about children and young people in residential settings. I am particularly interested in young adults, some of whom are quite likely to want to look at residential colleges for their further education. The Minister wants to remove any duplication in funding in relation to the mobility component that people receive as part of DLA. I would be grateful if she could tell us how she expects to assess whether there is actually any duplication, because I have so far been unable to uncover much evidence of it. What assessment has she made of the implications for young people over the age of 16 in residential colleges, and particularly for their ability to participate as fully as possible in not only educational life but wider social life?
I echo the comments of the hon. Member for Eastbourne on housing benefit. I also want to highlight the concern that constituents have raised with me about the substantial costs of adapting housing and about the implications for them if the housing benefit changes and the housing benefit cap force them to move. It seems quite ridiculous that, as a result of other policies, we should disrupt families who might have had to make substantial investments to adapt their home accommodation. I hope that the Minister will indicate that there will be flexibility in the system to ensure that families of young disabled people, in particular, are not subject to great instability and do not have to move as a result of housing benefit changes. That is particularly important for the young people we are talking about, because such instability disrupts not only their social and educational networks but their medical and care networks in many cases.
Jim Shannon
On that point, which the hon. Lady has clearly illustrated, does she feel that the Government need a concerted policy to address housing benefit for young disabled people, considering that 10% of them will be homeless in a short period?
Kate Green
Clearly, that is an incredibly serious concern, which the Minister will want to take seriously. Like the hon. Gentleman, I very much look forward to hearing her reply to his suggestion.
I want to say something about employment and education. I echo other hon. Members’ comments about the need to encourage employers to be more willing to take on disabled people and to recognise the extensive capacity that many of them can bring to the workplace. However, I want to raise a few points with the Minister about the education and training environment in which young people prepare for employment.
Following the loss of the education maintenance allowance, what assessment is being made of the extent to which young disabled people in financial need can access other sources of financial support, including those provided by colleges and schools to enable people to continue and complete their education? With the loss of Connexions next year, how will the new predominantly web-based information and advice service for careers be tailored and adapted to meet the needs of young disabled people? How will the structure of integrated budgets, which are meant for young people’s living needs, be protected, so that people are not forced to dip into them to pay for their education, including transport to educational settings, books and equipment? Like other hon. Members, I am interested to hear what further steps the Minister thinks she can take in government to encourage employers to become more willing to employ young disabled people.
I am pleased to have had the opportunity to contribute to the debate. There are many more issues that I would like to raise and which I am sure colleagues would like to raise. I am pleased that the Minister is here to listen to the debate, and I look forward to her response.
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.
Margaret Curran (Glasgow East) (Lab)
I am grateful to be here today under your chairmanship, Mr Hollobone, and I shall do my best to be equitable in the distribution of time.
I of course begin by congratulating the hon. Member for Eastbourne (Stephen Lloyd) on obtaining the debate. I call him an hon. Member as he sits on the Government Benches, but like my hon. Friend the Member for Stretford and Urmston (Kate Green) I regard him as a friend. I have got to know him well and he has this morning demonstrated his commitment to disability issues. His pursuance of those matters is well recognised in this Chamber and I hope to continue to work closely with him.
The debate has been very interesting, and hon. Members have spoken convincingly of the points that need to be addressed. I shall focus particularly on those that lie within my responsibility, but perhaps I will make one or two wider remarks. In an extremely moving speech, my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) dealt with the range of issues that must be grappled with, at the heart of which is the pressure on families. We should always be reminded of the daily grind that many families face. We can never have enough time to deal with those issues, and have just touched on them today. I hope we can continue to deal with them.
In my time working with this brief, I have met the Spink family and the Kennedy family. I do not know whether any hon. Members present have come across them, but I am sure that they are known to the Minister. They have spoken in shocking detail of their experience of services—their inflexibility—and the unwillingness, perhaps of us all, to fully appreciate the depth of the challenge that many families face. We say that we have made progress—I will defend the progress made by my party’s Government, and the Minister will defend hers—but there has never been enough progress to address the reality for those families.
My hon. Friend spoke very well, particularly about the last family he mentioned, and about veterans, as well as the amount of work we still have to do. Of course, the briefings that we received from the Children’s Society put it very well when speaking about the different culture and the different eligibility criteria that the hon. Member for Eastbourne drew to our attention, and the impact that that can have on the lives of young disabled people and their families. We must force ourselves to improve services.
I was tempted to talk about services, local authority funding and suchlike, but I do not want to go down that route because of the lack of time. I shall concentrate instead on welfare reform, which is clearly part of the Minister’s remit. The reforms relating to disability are perhaps some of the most controversial elements in the Government’s proposals in the Welfare Reform Bill. The Government will say that the Bill is the hallmark of their Administration and a flagship policy. I am grateful to have the opportunity this morning to interrogate the Government in more detail, but we will obviously continue to do so.
The hon. Member for Upper Bann (David Simpson) referred to universal credit; we have not focused enough on that, yet it is vital for disabled people. I also want to consider the personal independence payment, and I shall of course return to my hobby-horse, the disability living allowance mobility allowance, which has also been mentioned.
I start with DLA reform because of its importance to children, of which all who have seen the briefings will be aware. As has been mentioned, 1.8 million working adults will be migrated to the new benefit, and there are implications for those who turn 16 in 2013, but we do not know much about what will happen to the 300,000 children currently in receipt of DLA, other than the fact that their situation will be considered once the proposed reassessment of adults is under way. That is controversial in itself and is causing enormous alarm among charities, families and individuals.
It is vital that we deal with this quickly because clause 87 of the Welfare Reform Bill, which is making its way through Parliament, removes clauses 71 to 76 of the Social Security Contributions and Benefits Act 1992—the legislation that currently provides DLA to disabled children. Alternative arrangements clearly have to be put in place quickly and we need to know the details soon. The Minister will be aware that in Committee we asked what the proposals for children were likely to be, and my hon. Friend the Member for Stretford and Urmston mentioned several times the need to consider the matter. A number of amendments were tabled—they were not successful—on reassessing the impact of the six months delay in receiving benefit and whether the ending of automatic entitlement would affect children. A number of substantial questions need to be dealt with in depth.
Disability premiums in universal credit are vital, and I ask the House to focus on them because charities are deeply concerned about the changes. Those on the middle and lower rates of DLA care who receive only the disability element receive £52, and those on the higher rate, who receive both the disability element and the enhanced element, receive £73. Under the new system of universal credit, the rates for children will be aligned with those for adults, so that there will be two rates of award: £25.95 and £74.50. That change means that people will now be eligible for either the lower or the upper rate of premium, rather than the combined amount. The important point is that those families on the higher rate will be slightly better off, receiving £74.50, an increase of £1.50; but those on the middle and lower rate will receive £25.95, a substantial reduction from £52. I ask the House to focus on that as the Welfare Reform Bill makes its way through Parliament—it is in the other place now. Support for disabled children on the middle and lower rate of DLA will be halved.
Charities estimate that about 100,000 families—including, for example, families with autistic children—will lose up to £1,366 a year, amounting to about £20,000 by the time a child reaches the age of 16. That is a substantial loss of benefit. As the hon. Member for Eastbourne pointed out, 52% of families with a disabled child are at risk of poverty. The benefit is means-tested, so the poorest families will suffer the greatest hit. That is a significant change. I note the hon. Gentleman’s gentle challenge to the Government to rethink some parts of the Bill, and I encourage him to take up that cause. Universal credit is seen as a panacea to the challenges of the current benefit system, but I caution Members not to rush to that conclusion, because many disabled children will lose out.
The DLA mobility component is one of the most highly publicised and controversial elements of the Government’s policy, and it applies to children as well as to adults. Specific reference has been made to children in residential schools and colleges who depend on mobility support. The briefing from Every Disabled Child Matters states that for all young people aged 16 to 25, the ability to get around independently is vital to allowing them to lead the ordinary lives of young people and for developing the life skills that will lead to independent living later in life. It would be devastating for these disabled young people to find that financial support for mobility was withdrawn just as their adult lives were beginning. The campaign to save the DLA mobility component is ongoing. I appreciate that the Government have announced a review, but some confusion remains about how the policy will work and what impact it will have. I ask the Minister to answer one simple question. Do any children in residential settings face the prospect of losing their mobility component? If so, I ask all Members to join me in saying that that should not happen. We should try to prevent that group of vulnerable people from losing such a critical benefit.
The Parliamentary Under-Secretary of State for Work and Pensions (Maria Miller)
It is a pleasure to serve under your chairmanship, Mr Hollobone, for what I think is the first time. You have presided over an extremely informed and useful debate. I thank my hon. Friend the Member for Eastbourne (Stephen Lloyd) for securing the debate. He and I have had a number of conversations about disability matters over the past 18 months, and he brings a great deal of expertise to the House.
The debate covered a broad range of issues and I hope to do justice to them in my response, but if I cannot answer them all in the time allowed, I will be happy to deal with them separately should Members wish me do so. First, I shall set out the Government’s approach to supporting disabled young people. I shall then answer some of the important questions raised today.
When I talk to disabled young people, as I did only last week and over the weekend in my constituency, I find them to be as ambitious as non-disabled people—no one in the Chamber today will find that surprising—and their hopes for the future are no different. They want a job in which they can excel, a home, a family and friends. They want to live independent lives, and those lives will be different for each of them.
The catch-all title of disabled can sometimes be unhelpful. As Minister with responsibility for disabled people, I have to deal with the wide range of conditions, illnesses and challenges that these people face. We heard today that it is only by joining together the work of social care, health, education and employment effectively that we can ensure adequate support for disabled young people. All of those elements have a part to play. Joining up those services to ensure that disabled young people live independent lives is at the heart of the Government’s work, but in doing so we must also ensure that we retain the ambition that every disabled young person and their family have for their lives, including the ability to take on the challenges of the future so that they can reach their true potential as an individual.
The hon. Member for Edinburgh East (Sheila Gilmore) rightly said that families have a critical role to play. Sometimes, though, it is important to separate an individual’s passions and desires for the future from the family. Although we need to ensure that families retain their vital role, we must at the same time recognise that it is the disabled young person and their individual needs that we must focus on first and foremost to ensure that they can enjoy an independent life, whatever that means for that individual. The hon. Member for Birmingham, Selly Oak (Steve McCabe) also made the point that by enabling disabled people to live independent lives, we can avoid many of the mental health problems that we all see in our own constituency surgeries. All too often such problems accompany disabilities.
Let me outline a few of the measures that the Government are taking. I pay testament to the work that my hon. Friend the Member for Brent Central (Sarah Teather) is doing in this area as a Minister in the Department for Education. It is under her stewardship that the special educational needs and disability Green Paper has been produced. I am thankful that she has agreed to work closely with me on that key reform affecting some of the transition problems that have been raised today. The single assessment that my hon. Friend sets out in the Green Paper will start to deal with some of the problems that the hon. Member for Stretford and Urmston (Kate Green) so eloquently articulated today. We are looking for local authorities to trailblaze the new approach, so that we can avoid some of the complications and hurdles that currently face disabled people and their families.
My hon. Friend the Member for Eastbourne talked about the importance of effective support for transition. Again, the SEN Green Paper clearly sets out the importance the Government attach to dealing with the variable support that is sometimes provided for parents and disabled children after they turn 16. It is precisely to resolve the problems post-16 that we are considering testing the new approach of having a single assessment across the full zero-to-25 age range, as well as ensuring that it is portable. The Minister of State, Department of Health, my hon. Friend the Member for Sutton and Cheam (Paul Burstow), is also involved in that.
My hon. Friend the Member for Eastbourne talked about key workers and how they support disabled people in transition. We are in full agreement that key workers can play a hugely important role in supporting families and young people to navigate through transition, which is why we commit in the Green Paper to invest in key worker training. We are in the process of appointing a voluntary, non-profit-making organisation to lead. Those are important and exciting developments that we can look forward to in the future.
[Mr Bone in the Chair]
Personal budgets are also pertinent. In our constituencies, we all see a great deal of money being invested in supporting individuals, but all too often it can feel that that money is not well co-ordinated. The Department for Health’s commitment to personal budgets and to allowing every disabled individual to access them is an important step forward and will help to ensure that all the available money is used to best effect. Last Thursday, I was fortunate enough to meet a wide range of individuals from disability organisations and a group of disabled people in Barnsley. I was told about the important benefits personal budgets gave in disabled people’s day-to day lives, including allowing them to lead the sort of independent lives they wanted. Barnsley is part of the right to control trailblazer initiative that was extremely well put together under the previous Administration. We are continuing the initiative because it gives more flexibility to disabled young people to start their lives in a strong and independent way.
The Government are also conducting an important review of employment support for disabled people. It is vital that we understand that the majority of disabled young people aspire to be in employment. All too often that aspiration does not come to fruition—perhaps through an inability to navigate the system or to get the right support in place at the time. Earlier this year, the Secretary of State for Work and Pensions asked Liz Sayce to produce an independent review of employment support for disabled people. That review, which was published before the summer break, highlighted that disabled people want the same access to jobs as everybody else, and the best way to make that happen is to ensure that employment support is built around the individual. We are consulting on the proposals set out in the Sayce review and we will publish a response in due course. At the heart of Liz’s proposals is support for access to work, which, for young people in particular, can give the sort of personalised support that they need not just to get into work, but to stay in work and to give them the opportunity to live independent lives.
The hon. Member for Birmingham, Selly Oak mentioned the importance of supporting disabled former members of the armed services. One of the recommendations from the Sayce review was to set up a cross-departmental group to consider the employment of disabled people, and I have done that straight away because I thought that it was a superb recommendation. One of my colleagues from the Ministry of Defence will be on that ministerial group for the very reason that the hon. Gentleman talked about. I hope that that reassures him that I understand his point. Many young people who have served our country have come out with severe disabilities and they require that support. The ministerial group will also include a Minister from the Department for Transport. As hon. Members recognised, transport is important in ensuring that disabled young people have independence and are able to get into the workplace.
Some of our work is about ensuring that the profile of disabled young people is positive. The Paralympics has an important role to play in that, but we are also investing heavily in user-led organisations to ensure that disabled young people have strong voices in the future. We also have a strong policy of ensuring that more disabled people have access to elected office, which is an important way to get one’s voice heard.
I will answer as many of the specific points made in the debate as I can now, but I will write to Members if I am not able to answer their questions in detail. “Aiming Higher” is a three-year programme set up by the previous Administration. It includes short breaks and transition support, both of which the present Government are continuing to fund. The fruitful work under “Aiming Higher” is therefore continuing.
To reassure Members who raised the implications of the personal independence payment, let me say that I recognise that the transition from DLA to PIP at 16 is an important and sensitive matter. I have already begun meeting organisations and representatives to ensure that they have clear input into our work. I recently met a number of organisations, including CLIC Sargent, to help to inform our thinking on the qualifying period. I am sure that the debate on the matter will continue in the Lords. I will be looking at the needs of individuals in residential colleges in the same way as the needs of other recipients of DLA. I understand the arguments that hon. Members have made today on that point. We have done some detailed work on the order of migration from DLA to PIP. We will make sure that it is a fair process and it will be considered as part of the equality impact assessment.
I apologise for not being able to cover all of points hon. Members raised today. Suffice it to say, the work that the Government are doing puts support for disabled young people very high on our priority list.