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I would like to speak about many other matters, but I know that other hon. Members want to speak, so I shall just refer to two essentials that have come out of our review: short breaks and appropriate services during the transition to adulthood. Short breaks are
absolutely vital for families. Without them, they reach breaking point. Sadly, many local authorities are cutting back such services because of enormous budget pressures.
The full report of parliamentary hearings highlights demographic changes. More children born with severe disabilities now survive into childhood and indeed adulthood. Those demographic changes are putting pressure on health, education and social services to offer the support that such children and their families need and deserve. Short breaks are one of the key services that the families with whom I meet want more of. They want them regularly, and they want to know that they can rely on them to make their lives much easier.
Families also face pressures during the transition from childhood to adulthood. Most parents feel pressure when their children are small. As the children grow older and reach 18, they leave home to lead their own lives as adults. For families with disabled children, it is the exact opposite. At the stage when parents want to enjoy time to themselves, too many find that they are looking after their children more because the transition to adult services let them down. Services are not there, so parents are under enormous pressure. The Commission for Social Care Inspection will shortly produce a report on the matter, and I look forward to reading it.
The Government have many excellent policies, but sadly, as a result of demographic changes and financial pressures, services all too often simply do not exist. I hope that the Minister and his colleagues in other Departments will use our reports detailed evidence to support their bid to the Treasury for more money, and that it will support them in developing the services that we all want for families with disabled children. A disabled child can both be a joy and bring pressures to the family. Our job as politicians is to do what we can to remove those pressures and to help the family. This is a key opportunity to do so. Every disabled child matters. That is our message. I finish by paraphrasing the childrens commissioners remark when we launched the report. He said that it was one report that should not be left to gather dust on a Ministers shelf. I will not let that happen, I am sure that many of my colleagues in this place will not and I sincerely hope that the Minister will not.
Mr. Bill Olner (in the Chair): Order. I am about to call another speaker, but four of you want to speak. Please have a little bit of self-discipline on timings, because I am sure that the Minister will want plenty of time to have a few words on this extremely important subject. I call Tom Clarke.
Mr. Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab):
It is an enormous pleasure to follow my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble). She made a remarkable contribution to the review she mentioned, not just at committee sittings and parliamentary hearings, but
during our visits to the Spark centre in Tower Hamlets and to the early support programme Salford, as well as in many other ways.
In an excellent speech, my hon. Friend outlined the thinking of the reviews cross-party membership extremely well, as one would expect. She referred to the childrens commissioner. She will know that I have just returned within the past few minutes from a meeting with him. She wisely declined an invitation to attend early this morningshe might well have been caught in traffic, in which case this debate would not have taken placebut she was there in spirit, and I thank her sincerely for her marvellous work.
the plight of children and families with disabilities is nothing short of a national scandal.
Those are strong words. Privately, some of my colleaguesnot those who took part in the reviewfelt that they were. Like my hon. Friend, I do not want to sound at all negative. With the greatest respect to the ministerial teamwe recognise the marvellous progress that has been made, although our responsibility is to identify what problems still existand speaking for myself alone, I think that I understand where the childrens commissioner is coming from, particularly after our meeting this morning.
The commissioner sees his job, and those who work for him see theirs, as a great challenge in the modern world. They feel a degree of frustration. They have an excellent relationship with the Department for Education and Skills, but they have nevertheless made it clear that they feel that their remit is considerably restricted. That applies to disabled children as well. They would prefer to report to Parliament itself rather than to one Department.
The Office of the Childrens Commissioner drew to my attention something fairly significant that must impact on disabled children in England particularly: it receives 30p per child. In Northern Ireland the amount is £3.80, in Wales it is £2.10 and in Scotland it is 90p. It would be unfair of me to complain too much about Scotland, but I do not believe, as we argue for more resources, that 30p per child in England is exactly appropriate. Therefore, I share the views of the childrens commissioner that we ought to address that issue, as well as the strong views that have been expressed. For example, children being in prison has been an issue of late, but the number of children with disabilities in prison, especially those with learning disabilities, is a challenge to us all. Therefore, if the commissioner sounded angry, there was certainly justification for that, and I have the feeling that my right hon. and hon. Friends will agree.
My hon. Friend the Member for Blackpool, North and Fleetwood referred rightly to demography, which was one of the biggest issues that we had to address. As she said, today there are 770,000 disabled children, which is an increase of 62 per cent. in the past 30 years. My hon. Friend the Member for Norwich, North (Dr. Gibson) has often referred to the improvements that have been made in medical science, and of course we welcome that progress. Nevertheless, that increase in
the population of disabled children does not come without problems. Those problems were identified in services, diagnosis, child care, gaps in data, early intervention, early support, and the impact of the benefits system. We made some important recommendations on those issues. The backdrop to all thatagain, we were unanimous in this viewis our determination to eradicate poverty, especially poverty among children, and disabled children and their families in particular.
My hon. Friend the Member for Blackpool, North and Fleetwood referred rightly to the emphasis on short break provision and respite care. Even if we had not had our views on that before we came together in the review, the evidence that was submitted on the issue was extremely compelling. Three out of 10 written submissions from parents raised the matter unprompted. The issue clearly must be addressed. Parents, carers and others are absolutely dedicated, as we saw in our visits, but we simply cannot allow them to rely on that dedication without the support of respite care, for example. One evening a week would make the world of difference to people who, despite their love for their children, have taken on a task that by its very nature demands their attention 24 hours a day, seven days a week, and becomes extremely draining.
Some of the stories that we heard from parents were heartbreaking. All of them addressed the issue of resources. We also heard, rightly, from the Local Government Association. I am glad that my right hon. Friend the Chancellor said in the Budget statement that led to the review that he was dealing with the issue of resources for disabled children. I hope that our review will be helpful in addressing how those resources are directed. However, we all want to ensure that when resources are made available, they go to where we hope they will help to address the problems that people face and meet the needs that patently exist in virtually every part of the United Kingdom.
My hon. Friend the Member for Blackpool, North and Fleetwood rightly referred to the evidence that we heard on autism. I find it unacceptable that, for example, the time taken to diagnose autism varies up and down the country. Sometimes it takes many months and even years, but if people in that situation are fortunate, it might take only a matter of weeks. There ought to be a UK approach on such matters. Some people who suffer from autism or Aspergers often experience bullying and other unacceptable antisocial behaviour, which is another reason why we must identify those issues quickly and have a strategy to respond to them.
My hon. Friend rightly referred to advocacy. Much as I am watching the clock, most people who know me would expect me briefly to say something about advocacy. Where we saw advocacy in action, it represented best practice. The case for advocacy is now overwhelming, not only in the interests of the child, which we all agree ought to be paramount, but in our attempt to deliver services nationally and locally. For example, one mother told us that, apart from coping with the trauma of finding that she had a disabled child, she had to deal with 21 different specialists during the first months. However, when a key worker arrived, he or she was able to deal with those 21 people
and allow the mother to continue with her job of mothering in a difficult situation. We want to see more of that.
We recognise the role of the carers and we support early intervention. Indeed, our report made the specific recommendation that there should be a national centre for excellence in early intervention, because at that point we could anticipate and respond to many of the problems that would otherwise arise.
Apart from the many other issues that arose during our review, and to which my hon. Friend rightly referred, one of the biggest issues is the period of transition. Given my interest in disability over many years, I regret to say that we as a Parliament have not really addressed that issue to the extent that I would wish, however well meaning we might be. The transition period is the period after the educational system has fulfilled its responsibilities and when young people with learning disabilities find that their normal day is not their normal day any more. The bus does not come to collect them any more, and there is no school or training centre for them. That means enormous problems for both the child and their family. I do not wish to exaggerate the impact of such problems, but I very much regret the fact that, in some situations, some of those children find themselves in prison. That cannot be acceptable.
I conclude on this note. I reassure my hon. Friend the Minister that, although this debate is inevitably about problems and how we answer them, I do not ignore some of the positive aspects of societys approach to disabled children and some of the Governments achievements, which we of course acknowledge. Nevertheless, we still have a great deal to do at this point in the millennium. In earlier days, we acknowledged the work and commitment of people such as Shaftesbury and Barnardo; indeed, we saw the impact that Barnardo has even today. In view of the timing of this debate, just ahead of Christmas, I conclude by quoting Charles Dickens:
In the little world in which children have their existence, whosoever brings them up, there is nothing so finely perceived and so finely felt, as injustice.
Dr. Ian Gibson (Norwich, North) (Lab): I am delighted to play a part in this debate, because at least I feel that there is an open door, in that the review has helped to open up the issue of disability in our society. There were many Ministers who came to the reviewin fact, there were more Ministers at one stage than we sometimes see on the Front Bench during Prime Ministers questions. There is so much interest, and the door is open. I congratulate my right hon. and hon. Friends for really leading the Committees review and taking it into pastures new. I was a bit player in that, but I could see that a review is often more important than a Select Committee. I congratulate them on taking that path to get things done. They have my support, and that of many others, as they press on to ensure that things happen.
It is often said that we can judge any society by how it treats its vulnerable people. That is true of what we are discussing. We are beginning to open up about and consider people who, sadly, are born with disabilities or acquire them during their lives. I am pleased to play a part locally in coaching disabled people in football; I must say that some of them are better than parliamentary team players whom I know.
The Olympic games are coming here in 2012, but we seem to have missed the fact that the Paralympics will be associated with them. On many days, the Paralympics in Greece were better attended than the Olympics. The world has huge interest in the Paralympics, and I congratulate my right hon. and hon. Friends on bringing up the issue.
I turn to genetic disability. When I was much younger, we knew of about two or three conditions, associated with disability, for which there was a correlation with a gene that was sometimes, but not always, transmitted through family. At my last count, there were about 250. Yesterday afternoon, I dissuaded somebody who wanted to set up an all-party group on Marfan syndrome from doing so. Abraham Lincoln suffered from the condition, which affects particular people taller than 6 ft with long fingers. I hope that the Minister is listening. Sadly, they die from aortic aneurysms that have not been known about because there is no genetic testing for the syndrome. The condition does not run in the family, but a gene is associated with it.
Sadly, we have heard about the Chancellors little boy, who has cystic fibrosis, and about Duchenne muscular dystrophy. They do not consist simply of a gene and a condition; every affected individual has a different range of symptoms. That tells us clearly that we have to treat such people as individuals when it comes to their social lives. Genes do not always have the same aberration; they can be different within a gene. There are many different types of cystic fibrosis, Marfan syndrome and so on. Medical people are not always taught that lesson; they think that just one condition is involved and that all its manifestations should be treated the same.
I turn to the issue of quality of life. Last week, I spoke at the National Institute for Health and Clinical Excellence conference. It is tearing itself apart over quality of life, which it has to define before deciding whether drugs will improve it. A huge debate is coming up about what that phrase means.
Two friends of mine, Annie Kerr and Tom Shakespeare, have written a book that discusses genetic disability. They say that the problem is not inherited genes, but the society in which people develop, and that society cannot handle the kind of lifestyles that some people can undertake. It always wants the perfect person: the Olympic champion, the Wayne Rooneyperhaps not Wayne Rooney, but a star of that ilk.
The medical model is wrong; we should think about the society and quality of life that we provide for individuals. Deep down, that is what the report is about in a broader sensewhat schools such people should go to, the medical treatment they should get, their employment prospects and their chances of independent living. In my constituency, the Julian Housing group is amazingly good at helping individuals and giving them the confidence to lead
their lives on their own. We have to think of all such things and join them up in many different ways.
Disability is still stigmatised in many quarters. My people in Norfolk say, We are very good with disabilitybetter than other counties. However, when I press them, they say, Yes, a lot more can be done. Last month, during Enterprise week, I went to Norfolk and Norwich Scope AssociationNANSAwhich deals with cerebral palsy. It was an amazing day. The people who work there are mainly women, and the commitment, devotion and time that they give the individuals with whom they deal are absolutely amazing. The women help them to access toys and equipment so that their quality of life can be improved.
I have met mums at the association who can work only part-time because they have to care for their son or daughter. In that situation, a person has to be hard, rather than mad, and want to do something about it. I was inspired by what those mums had done. They tell me about how hard the disability living allowance forms are to fill in and how little help they can get. They often talk about their poverty. We have heard about respite care, but those women cannot get their benefits that easily either. There are only a few after-school and holiday clubs. The child of one woman at NANSA had been on a waiting list for a special needs youth club for several years; other children were also finding it hard to get a place. There are special schools in Norwich for kids with different types of ability, but they are over-subscribed so the kids cannot get in. That is not an example of good society or of how to handle those issues.
I shall come to a conclusion to allow others to speak. When we talk to people in Norfolk county council who run services for the disabled, we ask, What is the matter? They say, We sit around the table, we talk about kids, but when disability is mentioned, everybody shuts off and goes for a cup of tea. That is not tolerable. No money is ring-fenced for looking after and buying equipment for people who have such disabilities. I am told stories of how Government money for such equipment has been taken outthat sounds like the national health serviceand put into other areas of endeavour.
Disability is stigmatised in debating chambersin Norfolk, at least. I am sure that it is true elsewhere. We need an agency that pulls all the resources together. People should not work in the silos where they work magnificently; we need to consider the co-ordination of treatment and develop the careers of those with disabilities.
I shall really finish now. There are a lot of problems in thinking about how we target or resource young people as they grow up. I know children who were cut off at the age of 18; there was nothing for them. It is not like that at the Connexions career service, which helps fully able people and provides a whole programme under which they can develop. I know that Connexions has a bit of trouble here and there, but disabled children do not have such a service. In Norfolk, at least, there does not seem to be a progression of interest and services to take them through to adult life. People are forward-looking; they want to do that, but do not have the resources.
I have just finished an inquiry on myalgic encephalomyelitis. It is interesting how many children
have the condition. They cannot get out of bed during the day. There is a lack of co-ordination between education, medical and social services in respect of looking after children with the condition. In fact, some do not even believe that it exists. If our inquiry showed anything, it was that ME is a condition and that 250,000 or more people suffer from it. I ask the Minister to consider such problems, which are not like autism, which is now associated with disability; conditions such as ME are still not taught at medical school.
The families of disabled children do not ask for much; they simply want to be able to lead a normal life and to get the help and support that would allow them to do that. They want the right information, the right equipment, occasional respite and short breaks. That does not seem unreasonable; such things should be provided.
Mrs. Betty Williams (Conwy) (Lab): I congratulate my hon. Friend the Member for Blackpool, North and Fleetwood (Mrs. Humble) on securing this debate. I thank her and my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) for how they chaired our inquiry sittings before the summer recess. Later, while some of us were enjoying ourselves elsewhere, they worked extremely hard to compile the draft report, which we considered after the summer. I salute what they did and applaud their deliberations and recommendations. The report is totally evidence-based, and I hope that the Government will accept not some of but all the recommendations.
I shall give my perspective as a parent as well as a parliamentarian. My hon. Friend the Member for Blackpool, North and Fleetwood, who was the vice-chairman of the inquiry, worked extremely hard when she was the social services chairman in her area many years ago. Today, the needs of people with disabilities have risen some way up the political agenda. I am very pleased about that, but it was long overdue. As has been said, disability is more than just a word. Unfortunately, councillors, parliamentarians and people in other places think of one thing when they think of people with disabilities: someone sitting in a wheelchair. That is not entirely the case. There are different degrees and different disabilities, and that certainly applies to children with disabilities.
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