Disabled Young People (Support)

Mark Tami 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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.