Mr. Dave Anderson (Blaydon): When I applied for this debate, which was only publicised last week, I did so as the chair of the all-party group on muscular dystrophy. Despite that, I was inundated by children's campaigners from Mencap, Whizz-Kidz, epilepsy support groups and Every Disabled Child Matters. They all wanted me to raise their issues here today. I explained that because of the time constraints, that was not possible. However, the needs that I will raise today are linked, and may be addressed by some of the issues that we will discuss today. The fact that I do not go into any detail about the diseases does not mean that those campaigners do not have a genuine case that should be listened to by Government.
Within the all-party group on muscular dystrophy, we have worked very hard. I became a chair of the organisation three years ago. We have done a lot of good work with Government and have persuaded them to give us money for research to try to find a cure. In particular, we have discussed the lack of support across the country. In certain areas of excellence, particularly Newcastle and London, people who suffer from these problems get a much better deal than those in the rest of the country.
I shall consider the issue of the quality of life for people who suffer from these diseases and also how we can give our young people the best possible opportunity to make their way in life. I shall also consider how they can be given access to as normal a life as possible because quite clearly the young people who are affected by these diseases cannot live the normal life that most people in this room have. It is our responsibility to go as far as we can to make sure that their life is as good as possible and of the best quality.
What are we talking about; what is the scale of muscular disease in this country? There are more than 60 different types of muscular dystrophy and related neuromuscular conditions in the UK. It is estimated that for every one million of the population, more than 1,000 children and adults are affected by muscle-wasting diseases in the UK. Those disorders can be genetic or acquired. A number of the conditions, such as Duchenne muscular dystrophy, hit young boys very hard and are particularly aggressive. They cause progressive muscle wasting, weakness, orthopaedic deformity, cardiac and respiratory compromise, and result in premature death. Many young boys in this country - two a week - are dying before they get beyond their teens. That is quite simply unacceptable.
Other types of the disease cause long-term and life-long disability for many people. Some disorders can present in childhood or in young adult life; others have late onset conditions in adulthood. However, the sad reality for those suffering from all these diseases is that there is no cure, which is even more reason for us to do everything that we can to make life as good as possible for such people.
It has been shown that a lack of specialist diagnosis, treatment and care for these conditions, particularly for people with life-limiting conditions, can negatively affect their life expectancy. On the other hand, where neuromuscular specialist services are available, they have a real impact on quality of life - even if they do not necessary improve life expectancy. Another common factor associated with the disease is that patients almost always have heart-related problems. Muscle weakness is also often associated with poor ventilatory ability and respiratory failure, which is often over-looked by professionals, who are unfamiliar with the conditions. I do not wish to criticise those professionals; that is just the reality of what we are dealing with. Pain management is a common feature of the daily life of those suffering from such conditions and can cause nerve deterioration.
Despite the above points, neuromuscular services are not yet recognised as specialist services by the Department of Health. That is one of the things that we in the all-party group on muscular dystrophy are strongly arguing and campaigning for. In September last year, the Muscular Dystrophy Campaign published findings taken from interviews with young adults living with these conditions. Those findings resulted in the launch of a new campaign called "Bridging the Gap", which aims to improve the transition into adulthood for young people and ensure that it is as smooth as possible, particularly for those suffering from these diseases and neuromuscular conditions. We, as a society, need to do all we can to ensure that the young people inflicted with these conditions are provided with the best possible access to appropriate work experience, proper training, higher and further education and good quality employment. Those for whom paid work is not an option should be given valued activities.
Sharp research - an independent research agency - interviewed 20 young people with the condition about their university plans and the experiences they have had. The list is in the report, but I shall mention some of the findings. Students found it difficult to find employment during university holidays. Some social services departments had little idea about how to implement feasible care packages for disabled students going away to university. Students who remained at home because of that felt that they had missed out on key parts of university life. The short time between A-levels and the start of a term sometimes caused delays because universities only started to make adjustments once they knew disabled students would definitely be attending that place of learning. Many universities reported that there was a huge amount to organise and their number one plea is, "Help us to plan early for others coming along."
Following the success of last year's campaign, the charity was awarded £250,000 by V - the youth volunteering charity - to set up a young network of campaigners across Britain. Yesterday, the Muscular Dystrophy Campaign launched the new campaigners' network, trailblazers, at the annual general meeting of the all-party group on muscular dystrophy. Trailblazers aims to be part of the antidote to the problems identified in "Bridging the Gap" interviews by providing a real voice to young people with neuromuscular conditions.
The trailblazers network has 12 regional campaign groups that are led and run by young people with these conditions and other disabilities. The groups will identify, research, report and campaign on issues that are important to them in their region. Our vision is to ensure that all young people with these conditions can access work experience, training, higher and further education, and quality employment.
The challenge facing the Government and us as a society is huge. Those people involved with the issue are very aware of the skills gap in this country. The reality is that by 2020 few people who do not have skills will be able to get into work. It is estimated that by 2020, 40 per cent. of jobs will require people to have at least a level 5 qualification before they can get a foot through the door. As of last year, 40 per cent. of disabled people had no qualifications at all. That is the size of the problem we face. Out of all the people not in work, 40 per cent. have a disability or a long-term health condition. The number of disabled adults of working age living in relative poverty has increased during the past decade. More than one third of all people in this country with no formal qualifications are disabled. In fact, figures from the Minister's own Department show that the current employment rate of disabled people is only 50 per cent. compared with 74 per cent. for non-disabled people.
For disabled people with a higher education qualification, the "lacking but wanting work" rate of 14 per cent. is actually higher that that of non-disabled people with no qualifications at all. We must be concerned about the lack of employment opportunities for people with neuromuscular conditions. Not all disability employment advisers at job centres have adequate knowledge of these conditions - again, that is not a criticism of them personally, but of the system that they work in. There is a need to develop a small specialist team of disability employment advisers who have the knowledge and can go out and give specialist advice and support to staff in local offices.
We have to face up to the fact that, as a Government, our economic ambitions for ending child poverty and giving young people the best start in life will not be achieved without much more innovation and investment to raise the skill level of disabled people. Increasing the number of disabled people in mainstream employment will also help to achieve equality for disabled people in society overall, which is, after all, one of the ambitions of my Government.
Skills are critical to people getting on at work - as well to people getting into work and, critically, staying in work. Disabled young people want and need a highly personalised package of education, training and support that meets their individual needs. What does that mean in the real world? Judith Merry, who is 19 years old and who I met yesterday for the first time, is in attendance today. This is what she has to say:
"I have congenital muscular dystrophy which means that I use an electric wheelchair to get around. I am fully mobile and can think and speak for myself. I have been through both mainstream primary and secondary school successfully completed my A levels and am now at Keele University studying American Studies and International Relations. I believe that I am qualified to get a good job. From my own personal experiences I have found finding employment difficult. This is not from a lack of trying; I have applied in my local area to the supermarkets and didn't get a job with them. I found one interview experience quite off putting; the supermarket was warned about a wheel-chair user coming to the interview and to have the lift ready. I ended up having my interview in their back freezer because the lift was broken which they hadn't bothered to check. The whole experience was embarrassing and quite an ordeal, not only for me but for my sister who has the same condition as me. I didn't get the job after all the fuss I went through and neither did she. I also applied to job agencies but they weren't successful either.
I have eventually found a job, but as a volunteer. This is of course not a paid job, which was what I was initially looking for. I should be able to gain equal access to employment like everyone else and not have to face any obstacles."
That is absolutely true. The process should be absolutely fair.
I shall ask the Minister four questions about the way forward. Will she agree to meet me and representatives of the campaign and the Trailblazers network to discuss the evidence uncovered in the interviews for the "Bridging the Gap" campaign? Will she do all she can to ensure that disability employment advisers build links with local schools and colleges to provide general employment advice to facilitate work experience for young people in the situation that I have described? Will she ensure that disability employment advisers use their relationship with employers actively to market the "Access to Work" scheme to ensure increased awareness of it? What will she do to ensure that the best possible support is provided to students with disabilities, so that they can study the subjects that they want to at the higher education facilities of their choice, which will give them a better chance of entering mainstream employment on gaining their qualifications?
Thank you, Mr. Hancock, for allowing me to make this speech. I hope that the Minister will answer my questions and that we can make progress.
The Parliamentary Under-Secretary of State for Work and Pensions (Mrs. Anne McGuire): It is a pleasure to speak in Westminster Hall under your chairmanship, Mr. Hancock. This is probably the first time that we have met in such circumstances, and I look forward to the experience.
I congratulate my hon. Friend the Member for Blaydon (Mr. Anderson) on securing this important debate. Not only here this morning but over many years he has shown significant commitment in raising awareness of the rights and needs of people living with muscular dystrophy. As he clearly identified, some of the issues cut across the concerns raised by many young people with different conditions or disabilities. The fact that my hon. Friend concentrated on issues relating to muscular dystrophy does not take away from the power of his case.
I am aware from the first part of my hon. Friend's contribution this morning that there is a great deal of work still to be done on specialist services, particularly specialist medical services, and that the lack of those services can have a serious impact on the lives of people with muscular dystrophy and similar conditions. I am aware that my hon. Friend met the Under-Secretary of State for Health, my hon. Friend the Member for Brentford and Isleworth (Ann Keen), on Monday to discuss research and specialist services. I understand that another meeting has been arranged to examine those issues again and perhaps to resolve some of the concerns that my hon. Friend the Member for Blaydon has raised. I give a commitment that I will pass on the comments that have been made in this debate to ensure that that Minister is aware of them.
The Government are proud of their record on extending rights and opportunities for disabled people, and I welcome the opportunity provided by this debate to highlight some of the progress that we have made and are making towards achieving equality for young disabled people and to reflect on some of the challenges. In the short time available, I will try to pick up on the specific points that my hon. Friend the Member for Blaydon raised.
My hon. Friend gave powerful illustrations of the situation that faces many young disabled people. They still feel themselves discriminated against. They feel that their talents, experience and educational qualifications are not recognised as they should be. Indeed, at a very basic level, the need for access to an interview is not even considered to be part of the way in which an employer should treat a prospective employee who is skilled and has the relevant qualifications. Obviously, it causes me, as Minister with responsibility for disabled people, grave concern that such a situation still exists, despite the fact that we have had the Disability Discrimination Act since 1995. We have strengthened that Act over the past 11 years while we have been in government, yet young people going for their first job and full of expectation are still treated in the way that my hon. Friend highlighted.
It is fair to say, however, that despite that reservation, the UK has become a world leader on disability rights. We have legislated to provide protection against discrimination at work, while offering new support and incentives to work. We are consulting on improving our specialist disability employment services. With those measures and others that I hope to highlight in the next few minutes, we have come a long way but, as my hon. Friend's speech clearly showed, major challenges still have to be tackled.
I place on record my support for Trailblazers, the Muscular Dystrophy Campaign's new network of young campaigners, which was eloquently championed by my hon. Friend. I would be happy to meet him and representatives of the network. I am keen to ensure that our policies and services are informed by the knowledge and experience of disabled people. That is why, as my hon. Friend may be aware, we established Equality 2025, which is a network of disabled people to advise the Government on policies affecting disabled people. Trailblazers can play an important role, not only in articulating the views of young disabled people but in enabling young people to develop vital skills through their involvement with the network. My hon. Friend will be similar to me in some aspects of his background. We picked up the skills of negotiation, debate and conflict resolution through our experiences in either the Labour or the trade union movement, or through involvement with other political groups and residents networks. I would be delighted to meet him and representatives of the Trailblazers network.
The Government acknowledged the specific challenges faced by disabled children and young people in our 2005 report entitled "Improving the life chances of disabled people". We are committed to breaking down those barriers to enable disabled children and young people to achieve their full potential. The report focused on four key aspects of a disabled person's life chances: independent living; early years and family support; transition to adulthood; and employment. My hon. Friend emphasised the latter two this morning. The report made a number of practical recommendations, which we continue to drive forward to deliver on our commitment of equality for disabled people by 2025. Indeed, before coming to Westminster Hall this morning, I was chairing a meeting of Ministers who are part of our life chances group.
We are making significant progress against the recommendations in the report. We have introduced many initiatives and programmes, which are having a significant impact on the life chances of disabled children and young people. They are too numerous to list now, but I will provide a few examples of the achievements so far.
We have transformed the civil rights of disabled people. We have improved the benefits system and continue to seek ways to do so. We have improved support for families with disabled children in line with the children's national service framework. We have introduced direct payments for families with disabled children and disabled young people, which increase choice and control and empower those families. We are investing an extra £340 million over three years to transform services for disabled children and their parents, as set out in our "Aiming high for disabled children" programme. We have extended opportunities for education and employment, which I shall now talk about in more detail.
We are strongly committed to ensuring that our education system fosters the ambitions and aspirations of young disabled people. Since September 2002, schools and local authorities have been under a duty not to treat disabled pupils or students less favourably than those who are not disabled. We have made it perfectly clear that when parents want a mainstream place for their child, everything possible should be done to provide that. I note that the two individuals to whom my hon. Friend referred in his illustration have been through mainstream education at both primary and secondary level.
We have significantly increased funding for the Learning and Skills Council to support disabled learners through further education, specialist providers, work-based learning, school sixth forms and personal development and community learning. We recently launched "Progression through Partnership", which sets out a vision for how Departments across Whitehall, such as the Department for Children, Schools and Families, the Department of Health, the Department for Innovation, Universities and Skills and the Department for Work and Pensions, which is my Department, will work together to deliver high quality support and incentives for disabled young people and adults in further education and training. It sets out a joint programme for change over five years and requires that the principal delivery agents and local delivery partners, including the Learning and Skills Council, local government's adults and children's social services and Jobcentre Plus, mirror that approach in delivering sustainable, positive changes for disabled learners.
Mr. Anderson: I thank the Minister for the kind words that she has said so far. The cross-departmental group that she mentioned seems to be exactly the sort of thing we need, but was any of the work behind that driven by people such as those who are with us today and who live with those experiences? We might think that we know what those people are going through, but the truth is that we do not.
Mrs. McGuire: I hope to give my hon. Friend and the colleagues with whom he works through Trailblazers some confidence that we work closely with disabled people to ensure that the policies and initiatives that we are developing not only are thought about in an office in Whitehall or even by politicians, but reflect the real life experiences of young disabled people. Many of the members of Equality 2025 are young disabled people in their late teens and early 20s who have recent experience of being part of an educational system and are looking to achieve their life ambitions. We take seriously not only the consultation with disabled people, but their involvement at all points in developing these proposals and monitoring how well we are implementing them. It is one thing to consult at the beginning, but we need to test ourselves all the way through the programmes. We always seek to do that, and to improve when we do not do it well.
We are also providing increased funding through the Higher Education Funding Council to institutions to help them support disabled students as well as providing disabled students' allowances directly to students. That support helps to remove the obstacles that prevent disabled students from entering and completing higher education courses of their choice.
My hon. Friend mentioned employment, and we continue to open up opportunities for disabled people to move into work. We have significantly expanded the range of specialist disability employment services, such as Workstep and the Access to Work programme, which I shall talk more about shortly. Those programmes have opened up work options for many thousands of disabled people across the country. My hon. Friend might be aware that we recently completed a review of those services to ensure a higher and more consistent quality of service to ensure a clearer focus on the individual needs of every disabled person we support, so it is not a template approach.
In response to my hon. Friend's question about the Access to Work programme, information on that is already readily available to employers through their relationships with Disability Employment Advisers and through Jobcentre Plus. We have increased the budget for the Access to Work programme year on year - from £15 million in 1997 to £69 million this year. We will continue to work with employers to raise awareness of their responsibilities under the Disability Discrimination Act 2005. We are also always looking for different and better ways for publicising that flagship policy, which supports so many in employment.
My. hon. Friend mentioned the necessary support for the transition from education to employment, which is crucial for many young people and their parents or guardians. For many young disabled people the transition into adulthood is not only about leaving school, often takes place over a longer period of time and involves many more aspects of a young person's life than it would for a non-disabled young person. So crucial do the Government think that that transition is, my hon. Friend will be interested to note, that Ministers have made transition to adulthood a standing item on their agenda at their quarterly meetings of the life chances group. We listen to young disabled people when they say that transition planning and service provision do not work for them, which is often the case, and we are certainly taking action to improve the situation.
I have already mentioned our "Aiming High for Disabled Children" programme, which commits £19 million to a co-ordinated transition programme due to begin in September. Our five year Independent Living Strategy, which we published in March 2008, commits the Government and all of our agencies to ensuring a seamless transition into adulthood for young disabled people, including those with complex health needs. That will cover all aspects of their lives, including transition between children's and adult services, housing, transport, employment, education and training. That will bring together those commitments across a number of Government Departments. Over the five years of the strategy, we expect to see significant improvements in the number of young disabled people who have transition plans and who have access to a person-centred planning and advocacy service. It is all right having the plans in place, but we need to ensure that they are fulfilled. We are also committed to reducing the proportion of young people aged between 16 and 18 who are not in education, employment or training, and that also covers disabled young people.
In response to my hon. Friend's points on the links between the Disability Employment Advisers and schools, those links already exist and undoubtedly add value, but I am looking for ways in which that engagement between education and our Disability Employment Advisers at local level can be improved. He also highlighted the issue of accessible housing. The Government have substantially increased funding for the disabled facilities grant programme, from £57 million in 1997 to £146 million in 2008-09. That grant now helps around 35,000 disabled people by providing assistance with major housing adaptations, which enable them to remain living independent lives in their own homes, which is crucial for the individual's stability and development. Our Independent Living Strategy has also commissioned further research.
Many of the initiatives and programmes that I have outlined today will take time to have an impact, but I echo my hon. Friend's comments that it is only by listening to the views of disabled people, and young disabled people in particular, through networks such as Trailblazers, that we will achieve our vision of equality for all disabled people by 2025.
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