I beg to move,
That this House has considered the matter of autism.
This is a wide-ranging topic for debate, but deliberately so. I hope that we will have time to discuss the varying aspects of this lifelong condition in relation both to children and young people and, of course, to adults.
As is now widely known, the term “autism” covers a range of conditions on the autism spectrum, including Asperger’s syndrome, with a hard “g,” if you please. In this, the 50th anniversary year of the creation of the National Autistic Society, which is now part of a thriving group of organisations and campaigning bodies, today offers an opportunity not merely to look back at the progress that has been made, but, most importantly, to look forward to improvements to the way in which we diagnose, educate and support people with autism.
I believe that I am correct in saying that this is the first time, apart from a 10-minute rule Bill that I introduced last year, that a specific debate on autism has been held on the Floor of the House during this Parliament. The last time that the issue was debated here was during the passage of what is now the Autism Act 2009. It is my pleasure to pay warm tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for her redoubtable stewardship of a private Member’s Bill that, after initial opposition from the then Government, made its way, in amended form, on to the statute book. It required the Government to create an adult autism strategy and to set out guidelines for local authorities and health bodies in England to support adults with autism.
Does my hon. Friend agree that we should go down the route of finding work for young people who have autism, Asperger’s or any other special need and getting them into full-time employment when they finish formal education?
I am grateful to my hon. Friend for that intervention. I pay tribute to the work that he does in his constituency of Ilford North, through a joint initiative with local businesses, to obtain sponsorship and support to help young adults and adults with Asperger’s or autism into the workplace. We need to send out the message loud and clear that, far from looking at people with autism as a problem, we should be celebrating the great gifts that they have and their potential to be constructive members of the workplace.
I am grateful to the hon. Gentleman for giving way. I want to ensure that I did not misinterpret him when I heard him imply that the previous Government were forced to do something. There was a debate about the Bill promoted by the right hon. Member for Chesham and Amersham (Mrs Gillan), but in the end she persuaded the Government and we brought forward the first autism strategy. That has led to improvements on the ground. It is important to say that this has been a cross-party drive, and it is much-needed because there are huge gaps for children and adults with autism. I just want to be clear at the beginning that the right hon. Lady’s drive had full Labour party and cross-party support.
I want to ensure that today’s debate takes place in that cross-party spirit. Members from all parts of the House warmly supported the provisions of the 2009 Act. I appreciate that Governments have conflicting priorities and pressures on their time. It was through the support of all parts of the House that that private Member’s Bill became law. There is a common purpose in the Chamber today, in relation to both the progress that has been made and our aspirations for our constituents who have autism and their families.
I thank the hon. Gentleman and others for securing this debate. Will he note that in Wales, the levels of employment among people with autism are worse, with 7% of those with autism being in full-time employment and a further 6% being in part-time employment? This House should join together in congratulating the Welsh Assembly Government, who have recently appointed an autism employment ambassador to champion the cause of those with autism in employment. That might be something that this Government would like to consider as well.
I am grateful to the hon. Gentleman. It is concerning to hear that the figures in Wales are dramatically lower than those in England. Clearly, the Welsh Assembly Government have to take their own course. Anything that is designed to promote the interests of young adults and adults with autism and their route into work has to be welcomed. It is early days and I very much hope that we will see a dramatic improvement in those concerning statistics.
Does my hon. Friend agree that one way to improve the employment situation for people on the autism spectrum, whether in Wales or here in England, is to create greater understanding among adults and among people’s peers at an earlier age? Will he therefore join me in supporting the Anderson Foundation schools challenge, which aims to improve awareness in schools? Will he encourage colleagues to get involved in that and to encourage schools in their constituencies to sign up to it in order to raise and widen awareness of what the condition means to those who suffer from it?
I welcome my hon. Friend’s intervention. I am, of course, happy to support the Anderson Foundation schools challenge. It is already yielding fruit. Special schools in my constituency are taking part. It seems to be a constructive and practical way not only to raise awareness of autism among the general public, but to engage children and young people with the condition in actively doing things that emphasise the positive aspects of life with autism.
I congratulate my hon. Friend on securing this debate; he is generous in allowing interventions. Does he agree that although councils, local education authorities and primary care trusts or their successors mostly do a good job, they need to co-ordinate their activities a little more and work closely together to ensure that people with autism—especially teenagers who have autism and physical disabilities—and their parents and families, get all the support they need?
My hon. Friend touches on a number of themes that I will develop in my speech, but his point about the complexity of conditions with which people present to the authorities is important and does not affect only autism. Often, complex physical and other conditions will present with autism, and I cannot emphasise enough the need for joined-up commissioning and thinking.
I was talking about the adult autism strategy, which is due to be reviewed by the Government next year. It focuses on improved training, the development of local autism schemes, and a better way to plan and commission services for people with autism. Importantly, it emphasises the involvement of service users and their families—that perhaps sounds a bit trite, but it is often overlooked when services are developed. Services will be unhelpful if they are not developed with the full involvement and consent of those who use them.
The hon. Gentleman is making a very constructive speech. When considering these problems as a whole, does he agree that more focus should be placed on the role of carers than has been the case so far? The National Autistic Society pointed out that only one in five carers has had the assessment involving local authorities to which they are entitled by law. Does the hon. Gentleman agree that we must change that?
I pay tribute to the right hon. Gentleman’s tireless efforts for people with disabilities, including autism, over many years. He is right to say that we overlook the role of carers at our peril and we must all face up to and address the amount of work that carers do and the pressure they are put under, as well as the lack of support they have had to get used to. Comments about joined-up thinking immediately make me consider the role of carers, and when developing health and social care legislation we must remember that not only care for elderly people but lifetime care for people with disabilities cannot be overlooked.
I was talking about the review of the adult autism strategy and my message to the Department of Health, and the Minister responsible for that review, is that we must ensure the National Audit Office report that was published earlier this summer is fully addressed. Although that report noted encouraging progress in many areas of the adult autism strategy, it stated that much more needs to be done to improve access to diagnostic services, personal budgets and social care assessments for people with autism.
Let me set out some facts for the House. More than half a million people in this country have autism—about one in 100. If we include the families and carers of people with autism, more than 2 million people will be affected in some way. That is about 3,000 people in an average parliamentary constituency, according to studies by the Information Centre for Health and Social Care. As the parent of a child on the autism spectrum—like some other Members of this House—I am firmly in that category.
Perhaps I should pause a moment to share with the House some of my experiences as a parent that have driven me to do everything I can, while I have the honour of being a Member of this place, to campaign for the interests of people with autism. It took quite a while for us, as parents, to acknowledge that things were not quite as we had expected with our child. People go through denial, guilt, anger and shame. However, we went through the difficult process with a firm realisation that we would do everything we could for our child. Like millions of other parents, I have been through that mill and come out on the other side, but I am left with the feeling that the system does not work. We are still very much obsessed with process and not outcome, and we seemingly encourage the creation of categories to fit children into rather than the other way around. Until we nail that problem, I am not sure that any of the changes we make, however well intentioned, will bring real change.
Having said that, I remain an eternal optimist about our public services. I pay warm tribute to the legions of teachers, teaching assistants, speech and language therapists, health professionals, child psychologists and all the other people in the special needs field who work so hard day in, day out to help and support people who need their services. We are lucky in this country to have such a dedicated range of professionals.
An estimated 88,000 school-age children have autism in England alone—that is about 1% of the total school population. Autistic children form the largest group of children in receipt of statements of special educational needs. The proposals in the children and families Bill will therefore affect them significantly.
Is that 1% increasing or decreasing? My understanding is that, with better diagnosis and better understanding of who fits on the spectrum, the number is increasing. It is therefore vital that we get those services right.
My local experience, which I am sure is shared by many hon. Members, is that the rate of diagnosis is increasing. Some years ago, when my daughter was diagnosed, I was startled to learn that, in certain parts of the country, there were no diagnoses of girls with autism. That was not because there were no girls with autism, but because the specialisations needed to make the diagnosis were not there. I am afraid that that patchiness applies today. We are at the early stages of fully identifying the range of needs. I accept that, at times, diagnoses are made in the wrong category and that children with other conditions are diagnosed as autistic, but that is inevitable when the system seeks to ensure that the needs of children are addressed in an increasingly sophisticated way.
I mentioned the need for parliamentarians and society to start viewing people with autism as people with huge potential. In a few years’ time, I want to stand here in the Chamber—or anywhere—and say that, in this country, we have cracked the code and ensured genuine opportunity for all people with autism and autism spectrum conditions.
I congratulate my hon. Friend on securing this debate—he does such good work in this field. He has spoken very eloquently of his experiences as a parent. I have lost count of the number of parents who come to my surgery with an enormous folder after working so hard on behalf of their child. They are the ones with the sharp elbows, the time and the wherewithal to do all the reading and understanding, and to battle their child through the system. This debate is about the millions of children in this country who do not have such parental support, such as children in care, getting the same access to services as children whose parents can drive their way through the system.
I am grateful to my hon. Friend. I am reminded of the famous quotation from F. E. Smith about the world offering glittering prizes to those with stout hearts and sharp swords—I think “sharp elbows” was the phrase my hon. Friend used. He is absolutely right. We need to move to a system where parents do not need to shout at the top of their voice to obtain provision for their child, or bang on the nearest door as loudly as possible or kick out at the authorities to get what they believe is in the best interests of their child. He is absolutely right about that.
Is it not a sad indictment that, in my experience and the experience of many who work in this field, our behavioural schools are packed full of children from families that do not have sharp elbows? Those children are labelled behavioural, whereas children from families that have the ability to get a diagnosis are labelled autistic.
The hon. Lady has great experience in this field and it has been a pleasure to work with her since we entered Parliament together. She is right. The category of behavioural difficulty is so often used as a repository for children who, in another context, would be treated differently. That is why, when it comes to diagnosis and identification of need, we have to do it better. We have to get better and better to ensure that children are in the right stream, the right school and the right environment. My worry—I know that she shares it—is that in labelling too many children in a behavioural category, we end up with children side by side in an inappropriate environment and in an unsuitable way that can be damaging to the child. I am grateful for her intervention.
The hon. Gentleman is making a powerful speech. I just want to say that I am sorry that I cannot stay much longer, but I wanted to be here to show my support for what he has said.
Following on from the previous intervention, does the hon. Gentleman agree that there is a role for educating health service practitioners to understand the early signs of autism, particularly Asperger’s? Is he as shocked as I am to hear of cases in my constituency of people being diagnosed with Asperger’s in their 50s, 60s, and even in their 70s? As my hon. Friend the Member for North West Durham (Pat Glass) said, that is an indictment of a system that is not working at the moment.
I am grateful to the right hon. Gentleman. Like him, I know of many cases of people who have been diagnosed in late middle age. What a missed opportunity for those individuals. That is not just a waste for them, but a waste of resources when it comes to how Government agencies plan provision for autism and related conditions.
I join in congratulating my hon. Friend on securing the debate. The right hon. Member for Leigh (Andy Burnham) is absolutely right to raise the issue of the definition of autism. Regarding the explanatory notes to the Autism Act, it is important to remember that part of the intention of the review process of the autism strategy was to deal with the definitional issue and keep it under continual review so that we could respond more quickly to new developments than if the definition was included in primary legislation. I hope my hon. Friend will support me in ensuring that the Government visit and revisit this, so that the issue raised by the hon. Member for North West Durham (Pat Glass) is considered seriously, and that we move on.
I am grateful to my right hon. Friend. We should all acknowledge that with increasing expertise and medical evidence the definitions will change and the way we approach autism will alter. Therefore, a statutory instrument is a more flexible mechanism than having to use parliamentary time to deal with all the concomitant difficulties involved in enshrining definitions in primary legislation. Superficially attractive though that often is, it can be a disadvantage to those with the condition.
I thank the hon. Gentleman for giving way—he is being very generous with his time—and I congratulate him on securing this debate.
Moving away from the Autism Act but on to the subject of people diagnosed with autism at a later stage, one issue that comes up is access to benefits and people’s encounters with the benefits system. I would be interested to hear the hon. Gentleman’s thoughts on how that aspect of provision could be improved to reflect the needs of people with autism, particularly older people whose condition has been recognised late.
Order. Just before that intervention is answered by the hon. Member for South Swindon (Mr Buckland), to whom I always listen with huge interest and respect, I know that he will not mind if I point out to him and the House that nine Back Benchers and a couple of Front Benchers are still to contribute. I am keen to accommodate as many people as possible, consistent with hearing the continuation and conclusion of his excellent speech.
I can assure you, Mr Speaker, that I am watching the clock anxiously, and I will now make progress. I am grateful to hon. Members for their interventions.
The hon. Member for Edinburgh North and Leith (Mark Lazarowicz) is right about the problem he illustrated: diagnosis is one thing but provision for older people with autism is another. Many older people to whom I speak tell me that, having had the diagnosis, they turn around and say, “Well, what now?” Very little happens after a diagnosis. Other speakers will deal with the point about assessment for benefits, but the message has to go out loud and clear that more training must be given to those responsible for conducting benefit assessments, so that what I call invisible conditions, such as autism, are fully understood by those conducting the assessments. I am sure that he, like me, will have had cases where that invisible condition was not recognised.
I am grateful that the Under-Secretary of State for Education, my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), who has responsibility for the draft Children and Families Bill, is in his place. I want to highlight a report prepared last year by the all-party group on autism, which I have the honour of chairing. I know that he has been listening carefully to the points and recommendations made in the report, and I welcome his approach in listening to the points made and already making changes to some of the provisions in the Bill—for example, the inclusion of apprenticeships as part of the future education, health and social care plans. I approach my remarks today in that spirit of engagement and listening.
I mentioned the all-party group’s report. Our inquiry included an online survey in which nearly 1,000 respondents took part. It is, I believe, an authoritative and useful source of information when it comes to the development of policy. Among other things, we recommended that local authorities establish local training needs for special needs and identify where specialist autism knowledge is available to local schools. The funding for specialist training programmes for teachers has to be an important part of that, and we look to the Government for their continued support.
We were concerned about the exclusion of children and young people with autism. They often result, sadly, in lives that turn into criminal justice issues, huge wasted opportunities and expensive mistakes that cost our country dear. We are concerned that schools with a high number of exclusions, permanent or fixed-term, should not be graded as outstanding or good in terms of behaviour, because we regard exclusions as a badge of failure. I say that with respect to all the professionals involved. I understand that it is often difficult to manage young people with autism and other conditions, but exclusions are not the way to deal with the problem. All they do is push the problem on to another agency. It is the equivalent of kicking the can down the road. That is a phrase we often here in this place, but it is what is happening to young people with these conditions far too often.
The all-party group also emphasised that the new system should ensure that all children with autism, whether they have a statement or not, have access to the necessary support, and that there be a lead teacher for autism in every school. We must not forget that children currently in receipt of help under the school action or school action plus schemes might not have needs that are acute enough to merit a statement or an education, health and social care plan, but their needs will remain none the less. I would be interested to hear the Minister’s observations about children in that category.
Will the hon. Gentleman give way?
I am afraid I need to press on.
There is also a need for joint commissioning of services, which is something that other contributors have touched on. In Swindon, which I represent, joint commissioning is already happening—we are seeing joined-up thinking, working and action—but in many places there remains a dislocation between health and education. Putting it bluntly, without the proper involvement of local health agencies, these reforms just will not work. The role of health and wellbeing boards, which were set up under recent health legislation, will be pivotal in ensuring proper joint working. I therefore urge my hon. Friend to do all he can as an Education Minister to ensure that other arms of government are doing all they can to ensure that education, health and social care plans knit together and provide a continuum of care.
I wanted to talk about accountability; very briefly, I will say this. Unless parents and carers feel that there are proper lines of accountability in decisions about their children, the system will not get the confidence it needs. Therefore, a proper and effective complaints system, encompassing all state-funded schools, must be put in place. I accept that school governors and Ofsted will have a role to play in the process, but personal action plans—agreements that will provide objective measurements of progress for parents to measure their schools against—are essential. This is not about bureaucracy for the sake of it; it is simply about ensuring that we can harness the earnest energy of parents to ensure the system works as best it can.
I welcome the proposals for local offers on SEN. I accept that local agencies will need to develop their own services, but I caution the Government in this respect. A national framework within which local offers can be developed will be necessary. The analogy I draw is between the system we have in health—where guidelines from the National Institute for Health and Clinical Excellence provide a framework within which local commissioners can develop services—and a system that I believe could work well in education. Such a system would ensure that parents and carers knew there was a basic standard to which the local offer would be made.
We have already touched on the problems and challenges facing young adults with autism going into the world of work. We have heard some depressing statistics in Wales. In England, one in four children with autism obtains some form of education or training after leaving school. That means that three out of every four do not have those opportunities. Some 25% of graduates with autism are unemployed, which is the highest proportion among any disability group. Fewer than one in seven adults with autism are in full-time employment, which is why I am encouraged that the Government are to extend the regime of education, health and social care plans right up to the age of 25. That is vital and acknowledges the fact that many young people with autism develop very much at their own pace—in a way that does not conform to the primary, secondary and tertiary stages of education—and it does so in a way that will allow them to develop and mature into adulthood. However, we do not want to move the cliff edge from 19 to 25. We have to ensure that the transition into adulthood after 25—after the end of the plans—is smooth and planned, and inspires confidence not only among those young adults, but among their families and carers.
The age in which people with these conditions are categorised as needing to be dealt with in a little box in the corner has ended, but we are now in a transitional phase. We have not yet created the systems that will allow the integration of such people into the mainstream of our national, social, economic and political life. I very much hope that today’s debate will, in some small way, be yet another milestone along that important road, so that in the years ahead, we as parliamentarians can say that we did all that we could to ensure that a minority with so much to offer was allowed to play its part at the heart of our life.
I thank the hon. Member for South Swindon (Mr Buckland) for securing the debate and for his fine speech. I should also like to say how much I value working with him on the all-party group on autism. For many people watching this debate on television, their usual view of Parliament will be the robust exchanges that they see on a Wednesday at Prime Minister’s questions, and I confess that I play a part in that, as Parliamentary Private Secretary to the Leader of the Opposition. For me, however, Parliament is more about debates such as this, when we come together across geographical and party lines to try to progress an issue of great importance to our constituents. Such debates reveal what this Parliament should be all about.
Like the hon. Gentleman, I have to declare an interest in that I have a son with autism. That explains much of my involvement in the issue and in the work of the all-party group. I would like to pay tribute to the work of the National Autistic Society for its campaigning and for the services that it provides, as well as for providing parents with hope and with help when they need it most. When a parent first becomes aware, perhaps through a teacher or through their own intuition, that their child might have autism, the resources of the National Autistic Society will invariably be the first that they access to learn more about it. The role that the society plays is vital.
I welcome the intentions of the Government, as revealed in their Green Paper. We all want a more joined-up system that is easier for parents to access and that makes it easier for young people with autism to get the support they need. I know that a lot of parents have concerns; I hear them from my own constituents as well as from people who contact me as an officer of the all-party group, and I would like to go into those in some detail. As I understand it, however, the Government’s intentions are good.
At present, it is too much of a fight to get what our children need. Parents always tell me that local authorities are reluctant to give a statement, telling them that they do not need it, that they can have the same support without it, and that it is unnecessary because their child is doing fine. That is wrong. Too often, only those people who are really prepared or equipped to take on the system will get what they need, as the hon. Member for Winchester (Steve Brine) pointed out.
My hon. Friend is making a very well informed speech. With regard to local authorities, does he agree that there are major gaps? For example, only 9% of people with autism are entered into the system for speech therapy, perhaps because their GP has recommended it. Local authorities ought to be defining these matters much more clearly, and we should encourage them in the debate today to take a proper role in these important issues.
I absolutely agree with my right hon. Friend. I also agreed with the hon. Member for South Swindon when he said that the current system was not working as it should. I understand why local authorities are reluctant to award legally binding entitlements. They are concerned about how they will pay for them. The underfunding of local authorities at the moment is a scandal, but that is another debate.
When a parent needs support for their child, nothing other than the support that they require will do, as I think we can all recognise. There is some wonderful specialist provision in this country—when it can be accessed. Last September, my son transferred from mainstream education to a special school that is outstanding. To know, as a parent, that one’s child is finally getting the support that they need is an indescribable feeling, but our mission must be to ensure that more parents know that feeling.
The main point I want to raise concerns parents’ rights, and I shall also talk about the length of time during which we support young people with autism. The Minister will be aware of the concerns raised by some parents that the draft Bill, rather than extending parents’ rights, gives the impression of wanting to cut them. Parents need the continued right to request statutory assessments and to have statutory time scales for receiving them. I understand that the Government have given evidence saying that they do not want to diminish these rights, but feelings are running high on this issue. Rumours abound that, in some areas, local authorities are receiving training that might allow them to refuse assessments to children of average cognitive ability. This would completely exclude from the system children with Asperger’s syndrome and those with dyslexia or visual or hearing impairments. I would be grateful if the Minister could provide some assurance on this matter and, ideally, tell us that the draft provisions will be amended to include these rights.
I would also be reassured to know that the new education and health care plans, which will replace statements of special educational needs, will carry the same legal force. This means making it a mandatory duty for a local authority to deliver what a child needs, and not simply to use “best endeavours” to secure appropriate provision. In the current funding climate, my worry would be that that will not be sufficient to get children what they need.
In addition, I would like it to be a requirement that parents will be informed of their right to appeal the results of a statutory assessment and will have some clarification of what the process will be. Is it correct, for instance, that the education part of the EHC plans will be appealed to the special educational needs and disability tribunal, but that the plan’s health and social services provision can be appealed only by judicial review? It would seem odd to separate these two vital areas of provision when the plans are partly designed to integrate them. Again, this would mean added complexity for parents.
Finally, any new legal regime inevitably means that important points have to be fought over again, as new case law is required. For instance, are speech and language therapies educational or health provision? Where does something like physiotherapy count? All these issues could be made much simpler through Government guidance, reducing the amount of things parents have to fight over. I am sure that many charities and this House, through such groups as the all-party group, could play a role in helping to deliver some of that.
There is often not much advocacy when it comes to the issue of funding for speech and language therapy. I know from my professional life as a solicitor that a disproportionate number of young people in the criminal justice system have autism. They are often not even able to communicate owing to the lack of speech and language therapy and indeed to the lack of proper assessment and identification of the problem, particularly when they are in custody. Does the hon. Gentleman think that this is another issue in respect of which we need at the very least continuity of care when young people go into custody and also better identification of autism and better provision of speech and language therapy?
I thank the hon. Gentleman for making that point, and I absolutely agree with him. It reminds me of the previous point about how, because the system does not work adequately, so many young people—and older people too—have ended up in inappropriate areas, whether it be in the justice system or in behavioural therapies, when what they need is the right support: it may be available, but they have been unable to access it.
As I have highlighted a number of concerns about parents’ rights, I would like to say how incredibly heartened I am—the hon. Member for South Swindon mentioned this, too—by the Government’s proposal to increase the age at which we support young people with autism up to 25. Let us not stop that support for a young person when they leave school or further education; let us keep it there so a young person can still get support if they return to education after taking on an apprenticeship or employment.
I commend my hon. Friend and, indeed, the hon. Member for South Swindon (Mr Buckland) for conveying their personal experience. I spent 14 years of my life as a teacher in special education and, as we have heard, many children have difficulties because they are on the spectrum. Is my hon. Friend aware that when people leave education formally—whether it be at 16 or 18—they immediately lose their disability living allowance and have to reapply for it as adults? Many people then become slightly alienated from parental help and other services. One service that my hon. Friend has not mentioned is social services. There should be not just health and education services, but social services and a statutory duty on the employment services to take on these people, with a duty of care, which does not exist at the moment in any department or any jurisdiction in the UK.
Again, that is an excellent point. Outcomes and employment transitions are hard for all young people, but they are particularly hard for young people with autism. Any extra support or assistance we can give to make that easier is definitely worth looking at.
On teacher training, I am always conscious that we ask that teachers be given training on so many issues, particularly those that interest us as parliamentarians. Ideally, we would get them to cover a huge amount of things, but that is not possible. However, there are a significant number of children with autism in the education system, and any additional training or guidance that could be given to teachers to increase their awareness not just of the condition itself but of its complexity, and the fact that it is different for every child on the spectrum, would be extremely advantageous. The work of the Autism Education Trust has already had a very successful impact, and I think we all hope that it will be possible for that work to continue.
We know that for too many of the families of people with autism the process of obtaining support is too hard, that we need to make it better, and that there are many organisations and bodies that could help us to do that. I welcome the Government’s initial steps in that regard, but I hope that they will also take on board some of the points that I have raised, which I am sure will also be raised by other Members. If we can make access to support for young people with autism just a little bit easier, we will have done the right thing by those young people and done a great service to their families. We will also have done the right thing by the education system, and gone some way towards ensuring that every child has a chance to fulfil his or her potential.
It is a great pleasure to follow the hon. Member for Stalybridge and Hyde (Jonathan Reynolds), and I pay tribute to him for his speech. It is good to know that here in Parliament we do not always shout and bray at each other, but sometimes work together with a common purpose and for the common good. In the same spirit, I welcome the Under-Secretary of State for Education my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), the children’s Minister, to the Front Bench. I also welcome you to the Chair, Mr. Speaker: you have taken a great deal of personal interest in this subject, and I pay tribute to you and your work in that regard.
Let me say to my hon. Friend the Member for South Swindon (Mr Buckland) that I am delighted that this is the subject on which I am making my first speech from the Back Benches for a very long time. It is a subject close to my heart because of my Private Member’s Bill, which was a truly co-operative affair involving Members in all parts of the House. However, the debate also gives me an opportunity to pay tribute to all the families and parents who sent the hundreds of e-mails that enabled us to secure a Second Reading for the Bill, and to put on the statute book what I think was the first, and is still the only, disability-specific piece of legislation in the country.
One of the hidden heroines of that process was my great friend Baroness Browning, who did so much to further the cause. I talked to her just before the debate. She continues to raise these matters regularly in the other place, and I want the Minister to know about an issue that is challenging her particularly at the moment. She is very concerned—as, I am sure, are many Members of this House—about the assessments that are being conducted for the Government, especially those conducted by Atos. I ask the Minister to acknowledge that concern, and to ensure that people with enough experience of autism spectrum disorders are able to make the fair assessments that we all want.
That concern—along with many others that have been expressed in the two speeches that we have already heard—is reflected across the board. It is felt that there is still a great deal to be done. Research by many organisations, including the Back-Bench all-party group but also the National Autistic Society, indicates that people are still having to battle and fight to secure the right support for family members. This year the NAS celebrates 50 years of providing advice and support, and its research illustrates that ongoing battle. Nearly 50% of the parents who responded to a survey that it conducted recently said that they were still having to wait for more than a year to obtain the right support for their children, and 25% were having to wait for two years. That cannot be right in this day and age, given the knowledge of autism that we now have.
Delays in obtaining access to support can have a significant impact. Nearly 70% of those parents said that the progress of their children’s education had suffered because of the lack of timely support, and I am sure that that is echoed in the experience of some of the parents of children with autism who are in the House today. I also think that such delays always result in poorer outcomes for children and young people with autism. My hon. Friend the Member for South Swindon knows that only 15% of adults with autism are in full-time employment, but one of the statistics he gave was 1% short. In fact, the disability task group in Sheffield said 26% of graduates with autism are unemployed, and that is the highest rate for any disability group.
I know my right hon. Friend has long taken an interest in this subject, but may I recommend to her the ROSE—Realistic Opportunities for Supported Employment—project in my constituency, which transfers such students from further education colleges into employment, and provides support that is gradually withdrawn as they become more independent? That is an example of good practice which I am sure my right hon. Friend would like to see copied throughout the country.
Certainly one way to maximise the potential of people with autism is to follow such examples of good practice. The all-party group might want to address these issues in the future. If we want to be hard-nosed about this subject, we could refer to a National Audit Office report published when the Autism Act 2009 was going through this House, which showed that if local services identified and supported just 4% of adults with high-functioning autism and Asperger’s syndrome, the outlay would become cost-neutral over time, and if they did the same for just 8% of such adults, that could save the Government some £67 million a year.
I worked very closely with the NAS during the passage of the Autism Bill, so I know that it strongly supports the Government’s proposed reforms to the special educational needs system. It especially welcomes the introduction of joint co-operation and commissioning duties, the extension of SEN law to cover academies and free schools, and the education, health and care plans for young people up to the age of 25, which will replace the statements.
The NAS has raised some concerns, however, and it speaks from a position of great strength. It runs seven schools for children with autism, and it is setting up an autism free school—in our area, Mr Speaker, of the Thames valley. The new NAS Anderson school in Bristol works with children to address the challenges they face, with the specific aim of helping them move back into community-based mainstream provision. The NAS knows from experience that these new schools are set up in response to great local need and are anchored in their communities. It is essential that children with complex needs can have access to such independent special schools, but I understand there is some concern that under the new system parents may not be able to express a preference for such schools in an education, health and care plan. I urge the Minister to ensure that such schools can be accessed by those who need them.
This debate has focused on the SEN reforms, but the Autism Act 2009 was borne out of a recognition that the specific needs of adults with autism were often overlooked by service designers at the local level and therefore they consistently missed out and did not get the help they needed. Unfortunately, that is reflected in recent NAS research. Some two-thirds of adults with autism are not getting the help they need.
It is vital that we get education provision right. Local authorities must ensure that they not only educate themselves, but implement the Department of Health adult autism strategy in a way that addresses local needs. In working with young people with autism and their families, local authorities must plan at the strategic level for local services and develop individually tailored plans to ensure that children with autism are supported into adulthood and can enter employment and live independently in our communities.
The adult strategy will be reviewed in 2013. That gives us an important opportunity to consider these matters. It also gives us a chance to celebrate improvements —there have been improvements—but we must not ignore the fact that there is still so much more that we need to do. I particularly urge the Minister to take on board the fact that he needs to work with his colleagues at the Department of Health and the Department for Work and Pensions, and with many others, including Members of this House, to ensure that the proposals to reform SEN are fully linked to the work on the autism strategy.
I am grateful to the right hon. Lady, who has done so much in this field, for giving way. On that point, does she agree that there is something wrong? We have been reminded that only 15% of people with autism are in full-time jobs and only 6% are in part-time jobs, which represents a loss of talent that is wrong not only for the individual but for society.
I am grateful for the intervention and am second to none in my admiration for the right hon. Gentleman, who has given far more to this matter over the years than I could ever hope to. His record speaks for itself.
The right hon. Gentleman is absolutely right. When I was preparing my Bill, I talked to an employer who employed high-functioning adults with autism and Asperger’s. I asked how he coped with having employees with Asperger’s, and he said he really liked it because he could be sure that they would do the same task and make the same check over and over again. Quality control was not needed at all because of the excellence of the work of those individuals. We need to recognise that people with autism can be a great benefit to a business or an industry and they are certainly not a liability or somebody who is just taken on to make up the numbers. The right hon. Gentleman’s intervention was very valuable and I wish that more employers would take on people who are on the spectrum.
Finally, parents and people involved in autism often refer to reaching the transition age as falling off a cliff. In my experience, it was less like the romantic idea of falling off a cliff and more like falling into a dark black hole. The Government must continue the work carried out by the previous Government and ensure that the Department of Health and others make sure that when young people with autism reach adulthood their needs are planned for and met by other services so that the black hole does not simply move to the age of 25, as many people fear it might.
We have come a long way in understanding autism, but we have a long way to go in understanding the spectrum and the challenges it presents to Governments and to individuals and their families. The case of Gary McKinnon brought autism back to the forefront of people’s minds and we must ensure that we do not forget the condition. It has been a Cinderella condition; this is the first debate on the subject in three years. We need to cast more light on it and to ensure that as a Government we gain lasting and positive change for people with autism so that they can achieve their full potential in our society. I very much look forward to hearing the Minister’s response.
I thank the hon. Member for South Swindon (Mr Buckland) for securing the debate and for the sterling work he and others do on the all-party group.
I came to this issue in the same way as most other Members of the House. After being elected in 1997, I dealt with case after case of families trying to fight their way through the statementing system. Families would come to me with packed files of different reports and threats of legal action. In addition, I was dealing with an adult aged 29 who had just then been diagnosed as being on the spectrum with Asperger’s. I accept that Asperger’s is a relatively recent diagnosis, but he had gone through school and into adulthood without any real support.
When I came to the House I sought the support of any other Member who had any experience, and the best advice I received was from Angela Browning, now Baroness Browning. She befriended me and took me step by step through the processes to secure for my constituents at least some access to services and their rights. That is how I became engaged in the subject.
When the right hon. Member for Chesham and Amersham (Mrs Gillan) fought her sterling fight to enact the Autism Bill, I was put on the Committee. It was rare in those days for me to be on any Committee, so it was clearly a subject on which I could not have done much damage. The right hon. Lady led a superb campaign that was subtle as well as incisive. It mobilised organisations and individuals across the country, the letters campaign worked, there were constructive discussions with Ministers and we managed to get a consensus across the House.
I want to touch on two points, one in relation to adults and the other in relation to children. The work that was done then has had a widespread effect on a large range of organisations, some of which would not be expected to engage on the subject. For the first time, the trade union movement has taken up the issue. The RMT is running a series of seminars on autism to support its members at work who are on the spectrum or who have family members who are on the spectrum—a major breakthrough. I pay tribute to Janine Booth, who is on the executive of the RMT. To give Bob Crow his due, the union has supported the seminars 100%. I attended the first one and the second is to be held tomorrow.
What has come out is a thorough discussion of the scale of discrimination encountered just to get into work and once people are in work. There are some appalling examples of people being ostracised. That is why the union now says that it has a role in ensuring that recruitment practices are fair and non-discriminatory, and in representing its members when they are in work to make sure they are not discriminated against. Those discussions have highlighted some real problems and the need to look into employment discrimination and perhaps to tighten the legislation to prevent discrimination.
I have to refer to the Atos system and applications for disability benefits that was set in motion by the previous Government. The Harrington reviews have been conducted, but the system is not working. Those turning up for Atos assessments are being assessed by people with no specialist knowledge of the subject area. That is causing immense distress and, yes, loss of benefit and loss of all income. We need to look again at that process. I have tabled various early-day motions. I am so frustrated by it that I think the system needs to be scrapped and that we should start again.
I pay tribute to organisations that are campaigning on the matter—Disabled People Against Cuts in this country, and Black Triangle in Scotland. It is worth reading the Spartacus report that was published two weeks ago, which gives individual examples. Large numbers of examples have been collected, showing how people have been treated and what they feel. In the cases I have been dealing with, many people who are on the spectrum are lost within the system and as a result lose benefit and are living in poverty. Often they are desperate to work.
The other issue is local authority cuts. In my area, speech and language therapy is being cut again and the local authority is no longer commissioning the service from the local health trust. That is having an impact. I have sat in on speech and language sessions over recent months. They are fundamentally important for early diagnosis and early intervention—pre-school intervention wherever possible. Children’s centres identify children who may not have been picked up in the past. I am worried that the pressure on local authority resources is having an impact on such specialist services.
I echo what was said by my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds). I work closely with a group in my constituency, Hillingdon Autistic Care and Support. Some wonderful people set it up and worked with our local authority on a cross-party basis. They have taken over one of our children’s centres and they bring parents together and provide direct services. They display a superb understanding and appreciation of families’ individual needs. A couple of weeks ago, the group held a meeting where all the parents turned up to talk about the new legislative proposals and voice their concerns.
The existing system may have been difficult to battle through, and we were looking for reform to make it easier, but not to undermine some of the basic securities. At least when parents got a statement, they knew what rights they had, what was to be delivered and the time scales involved, and they could use that to enforce the supply of services. Exactly as my hon. Friend said, however, there is now confusion about whether there is still a real right to request an assessment, and anxiety about whether the “best endeavours” wording is specific enough to define the nature of the services that are to be provided, as of right, or the time scales on which they will be provided. There are real worries among families.
I will discuss that point in my response to the debate, but I think it will help Members if at this stage I clarify what I said to the Select Committee last week about the rights that parents now have in relation to statements and what flows from them, and what we aim to achieve with the new system. Let me make it absolutely clear that the rights parents have in the current system will flow through to the new system—in fact, in many areas they will be enhanced through the introduction of a longer transition up to the age of 25.
I welcome—everyone welcomes—the longer transition, and my hon. Friend the Member for Stalybridge and Hyde made that point. It would be useful to get it on the record that people want the specific right of the appeal that has existed since the Education Act 1981 to be endorsed in the new legislation as well. We need to give people security that that will happen, and if that is what the Minister is saying, that is incredibly helpful.
Mandatory mediation also came up in the group discussion. I have never known mandatory mediation to work in any walk of life. If people are not willing to go into mediation, it does not usually work. To have mandatory mediation that involves penalties as well is, I think, completely counter-productive, but it has worried people, and on that ground a rethink is needed, and perhaps further clarification about how that will be introduced is needed. The parents, who got a lawyer to take them through what they envisaged the new system would be, wrote to me to say that what they had seen was extremely complex. My hon. Friend made the point about the difficulty of knowing what is referable to a tribunal. Is it now only education matters? What about health and other matters—where can they be referred to and where can parents appeal? Getting some clarity and simplicity in the system is critical.
In some cases in my area we have had to resort to law, using legal aid. There is therefore some anxiety about some of the restrictions on access to legal aid. Some clarity about that would be extremely helpful.
Everyone has their own experience and some of these cases are the most distressing I have ever dealt with, but I read John Harris’s piece in The Guardian a few months ago and recommend it to other hon. Members, because it summarised for me exactly what many of the parents in my area have gone through. They have been fighting their way through the system and then the Government come along and promise the opportunity of improving it, but now many fear that, in fact, we may be going backwards unless we get secure commitments from the Government.
The hon. Gentleman may be aware that a problem for families who have a child on the autistic spectrum that often goes unnoticed or unmentioned is the financial burden. Often, because the child has poorly developed gross motor skills and co-ordination, there is lots of accidental damage in the home, with items such as televisions, washing machines and carpets having to be replaced quite frequently, so in addition to all the challenges he has just listed, there is also a hidden financial burden of which most people are unaware.
I am glad that the hon. Lady makes that point, which I should have made earlier, because it is absolutely critical. We can get all these rights, but we need to be able to finance them, and it is not only local authorities and other services that provide that funding, because families often have to complement it. That needs to be taken into account in the benefits system.
I will give another example. When it comes to housing for families with a child on the spectrum—I have families in my constituency who have more than one child on the spectrum—one of the biggest clamours is for a garden so that they can play outside. I have dealt with one such family who were allocated a house by the local authority—it was in the private sector—that was on a busy road near a roundabout and had no front garden. That was a particular problem, because when the door was opened the child could run straight out on to the road.
There are many issues that must be dealt with when addressing the complex needs of individual families. That is why we had hoped that the new legislation would show a broad understanding and acceptance of the complexity of what individuals and families have to go through and at least have a faster and more simplified system that gave greater security. The message I am getting from the parents and local organisations I have met is that they are very fearful that their existing rights, limited though they may be, and the existing system, however difficult it may be, might be undermined and that everything we were hoping for in the new system will not be achieved.
I hope that, as a result of this debate—this is why I welcome it—we can improve some of the Government’s proposals and that they can then take away some of the concerns that have been expressed today to ensure that we get the legislation we all need and want.
I congratulate my hon. Friend the Member for South Swindon (Mr Buckland) on securing the debate. It is a subject that is dear to his heart and of which he has considerable knowledge and experience. I thank him for his very personal insights. I do not share his expertise —I make no bones about it—but I share his commitment when it comes to ensuring that the young people, in particular, in my constituency get the best possible deal from the upcoming children and families Bill.
Earlier this year I had the privilege of visiting the TreeHouse school in Muswell Hill, the home of the national charity Ambitious about Autism, to meet staff, volunteers and pupils and hear at first hand about the excellent work that goes on there. The school was set up in 1997 by a group of parents whose children had been diagnosed with severe autism. As they say, their ambition is to make the ordinary possible for more children and young people.
TreeHouse school provides children with specialist, intensive and integrated support to enable them to learn, thrive and achieve. It focuses on enabling communication and working with children with severe autism to give them a means of communicating with the outside world. It seeks to maximise their learning opportunities and, crucially, prepare them for a world outside school, one with employment opportunities, through the experiences of travel, recreation and enjoyment that every child deserves. I recall, in particular, the shop that had been set up within the school to enable pupils to experience both buying and selling everyday items, and I remember the hairdresser’s and the dentist’s, which encouraged young people to understand that what might currently be unfamiliar to them can be learned and, in time, accepted. I applaud the commitment and dedication of the staff, who strive to ensure the best outcome for every single pupil, however difficult the challenges.
My visit has since provoked a number of questions, because two aspects of the school have stuck in my mind. The first thing that struck me was how hard some parents had to fight—I use the word advisedly, as have many right hon. and hon. Members this afternoon—to get their child a place at TreeHouse school, having struggled with statements and funding, which invariably meant that their child’s arrival at the school was delayed far longer than was good for them.
I asked the staff about children who did not manage to get a place at the school until they were 12, 13 or 14-years-old and asked whether they would have been better off had they arrived sooner. The staff spoke of their ambition to reduce the age at which they took children so that specialist help could be available far earlier, developmental delays did not happen and specialist help was available. That would mean that children would not spend years locked within themselves and unable to communicate with the outside world before ever being given the specialist therapies that enabled them to communicate. My right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) spoke eloquently about the long and unacceptable delays which, in this day and age, we must do more to shorten.
The second question that my visit provoked was “What happens next?” When young, and indeed not so young, people with autism leave TreeHouse school, what security is there for them? What help is there to support them to enable them to lead as independent a life as possible? Post-16 is a difficult time for any child, let alone one on the autistic spectrum. Equally, what help is there for their families and carers who also go through very difficult years? That is why it is absolutely imperative that we get the best possible outcome from the children and families Bill. It is so important that turning 16 should not narrow the opportunities for young people on the autistic spectrum. Their education, health and care plan must be able to include provision by independent specialists, voluntary and private training providers, and, importantly, apprenticeships and higher education institutions. I want sufficient flexibility within these plans to enable young people to re-enter training or education after a gap to facilitate the sort of transition to adult life that gives them maximum support and assistance. An annual review, even if they are not in education, would enable local authorities to monitor progress and ensure that all young people with autism are receiving the support to which they are entitled.
I welcome the extension of statutory duties up to the age of 25, but it is very important to have the structured support needed to make sure that the transition is as smooth as possible. That is why I applaud the work carried out at Squirrels, a residential unit in my constituency for young people aged between 16 and 25 with autistic spectrum disorders. Its focus is on precisely that period—the difficult transition from school to adulthood. It works with its residents to firmly establish the skills of looking after themselves, improving their social inclusion, and continuing their learning development. As at TreeHouse school, there is a particular focus on communication skills through intensive speech and language therapy, and an emphasis on self-management and independence in preparation for a future life in the community. That is a very significant role not only for Squirrels but for every single organisation working with young people on the autistic spectrum. In Chilworth, where Squirrels is located, the residents can often be found on accompanied trips into the village. I well remember last summer attending the fun day to mark the opening of the new play area and village green. Many residents from Squirrels were present, integrating into the local community and having a very good time. They often visit the local shop and the pub. Such time spent in the community is absolutely central to young people’s development.
I am sure, Mr Speaker, that I do not have to tell you that tonight Ambitious about Autism celebrates its 15th anniversary. It describes itself as being 15 years young, and it has certainly been on an incredible journey filled with optimism and, as its name suggests, ambition. Its bold vision and determination continue to pioneer education for children with autism. This debate is therefore a timely opportunity to celebrate its commitment, its achievements to date, and, as with so many young people with autism, its future potential.
I commend the hon. Member for South Swindon (Mr Buckland) for bringing this matter to the House and for the compassion and knowledge that he portrayed from his own personal experiences. It is good to have such debates because they focus a lot of attention on issues to which we can all relate—in my case, not necessarily as the hon. Gentleman and the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) did but through interaction with my constituents and what they tell me.
I have been involved in the support of autism for many years in Northern Ireland, as have my hon. Friend the Member for South Antrim (Dr McCrea) and the Northern Ireland Assembly. Our constituency work brought us into contact with those who have autistic children and those who care for them. The hon. Member for South Swindon neatly put the issue into perspective when he mentioned all the emotions that people go through, as do the constituents who come to see me. These wee boys and girls react in the same way as others except that they are a wee bit more energetic. That might simplify the situation but it is the way that I would look at it.
I want to give an example of one wee autistic boy whom I know very well. His parents do everything for him—they wash, cook, dress and feed him, and clean, bath and toilet him. The mum and dad do all of those things for their wee boy. They amuse him and hug, kiss and love him. He depends on his parents for his every need. When he is at school, they do the washing, ironing, cleaning and shopping, and they try to find time to work in order to pay the bills. That is what having an autistic child means—their parents have more to do than those of other children.
They love their son with all that they have—every bit of their love—and all that they are but, sadly, love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. I have seen clearly the emotional and mental strain on those constituents I have spoken to and those parents of wee boys and wee girls whom I have met. There is a financial strain, an emotional strain and a physical strain, and all those things are sometimes overwhelming. That is why I am very pleased to be able to contribute to this debate. Perhaps, in a small way, it will lead to support for those people.
Every Member who has spoken so far has brought their knowledge and experience to bear. It is almost as if everybody has brought an ingredient to the master chef, the Minister, who will put them in a big pot, mix them all together and produce a lovely, palatable meal. I am sure that that is not how it will be done, but we look forward to his response. We as elected representatives can do many things to help young boys and young girls in our communities, but we also have to support them and offer them the best that our society can give to ensure that they do not reach the point of no return.
I do not know whether the Minister and other Members know about the Northern Ireland perspective, but if they do, that is good. I believe that we in Northern Ireland—I say this respectfully—lead the way on autism. The hon. Member for South Down (Ms Ritchie), who has just joined us, was involved in the Northern Ireland Assembly’s autism legislation, so the three of us—she, I and my hon. Friend the Member for South Antrim—have an interest in the issue and contributed to that legislative change. The Assembly introduced the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. I do not say that lightly; if hon. Members check it, they will see that that is the case.
I want to explain how all three of us contributed to that development at the Assembly. The Act is the first piece of legislation in Northern Ireland that requires all Government Departments to plan and work together on the delivery of a strategy. The strategy is unique, because it addresses the challenge of a five-party, power-sharing Executive working together across the whole of society to try to introduce something that works. I have to say that that is not the case in this House, but I hope that it will be with the draft Bill. Perhaps the House could take that message on board. I think that legislation similar to that which exists in Northern Ireland should be implemented here, and I hope that it will be when the time comes to debate the draft Bill.
Although I am aware that Northern Ireland legislation is unique, this place has to consider it and its relevance to all the other countries that make up the United Kingdom. I am happy that Northern Ireland has seen the need for and led the way with ground-breaking legislation.
Autism NI was at the centre of the campaign for the 2011 Act and used a grass-roots campaign. There was no money or external lobby company, just hard work and determination to gain support from every Member of the Legislative Assembly. It approached that by having autism ambassadors and health and education spokespersons from all the parties in order to build up expertise on issues of concern and bring everything—the ingredients that I mentioned earlier and other contributions —together. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy, and that formed the foundations of the Celtic Nations Autism Partnership, which also includes Scottish Autism and the Irish Society for Autism. We cast our net wide to get all the information. That has led to initiatives in the USA, a visit by the partnership and MLAs to the US Congress, and a visit to the European Parliament to initiate a partnership with Autism-Europe and MEPs on the development of a European autism strategy.
Hon. Members have spoken about the statementing of children. Every week, somebody comes to my office to talk about statementing and the delays in the process. Northern Ireland now has a system that enables the process to run more smoothly than it did in the past. There are still hiccups in the system and wee problems to overcome, but the Northern Ireland Assembly has legislated to put a system in place, with all the parties and all the Government bodies working together.
Does my hon. Friend acknowledge that it is vital for the Minister to liaise with Ministers in the Northern Ireland Executive, not only to see what we have done, but to see whether there are things that are not working out as we thought they would?
I thank my hon. Friend for that comment. We want to exchange our ideas and to ensure that if something is not working right, we do it better. Ministers in Northern Ireland would be more than happy to be involved.
I want to highlight some of the elements that must form the foundations of any autism legislation and that have been implemented in Northern Ireland. The Autism Act (Northern Ireland) 2011, unlike the English autism legislation, is equality driven and lifelong focused. We look at the child at an early stage and as they work their way through school and into jobs, which each of the Members who have spoken have mentioned.
The 2011 Act amends the Disability Discrimination Act 1995 to include those with social communication disabilities such as autism. That supersedes the Equality Act 2010 in Great Britain, which provides recognition only in guidance, not in the primary legislation. We have taken that a stage further. The 2011 Act changes the definition of disability in the 1995 Act so that the entitlement to services of people with autism is no longer measured solely by their IQ or their physical ability. Some of the things that a child or young person is asked, such as whether they can walk from A to B, are ridiculous when trying to assess disability. Access to services and benefits also now relates to a person’s level of social and communication impairment or function.
Previously, disability living allowance was disallowed because autism did not clearly fit into the protections and the definition in the 1995 Act. That is no longer the case. I suspect that all Members in the Chamber have fought DLA appeals for young people who have autism. Ten years ago, it was sometimes extremely difficult to explain to the DLA panel that a certain young fellow or girl needed more care and attention than their brother or sister who did not have autism. It is easier now, because there is a better understanding of autism. We have tried to address that issue in Northern Ireland.
We have placed a duty on the Department of Health, Social Services and Public Safety to act as the lead Government body in producing, reviewing and implementing a cross-departmental strategy for autism. Currently, cross-departmental co-operation is only discretionary. However, we have a strategy in place that brings all the Government bodies together and ensures that they all focus on what it is important to do. We have placed a duty on all Departments to agree a data-collection system to calculate the current and future need for services for people with autism and their families. That helps us to plan for the long term.
Does the hon. Gentleman agree that any autism strategy should include respite care for the family?
Absolutely. Anyone who knows such families knows that that is critical. One just has to see the boisterousness of the young person and the distressed look of the mother to know that the mum just needs a bit of respite care to get a break for a wee while. That is an important factor that perhaps we have not mentioned. I thank the hon. Lady for raising it.
In Northern Ireland, we have also placed a duty on the DHSSPS to detail clearly how the needs of families and carers are to be addressed. There is a clear directive in the strategy on the development of family support services. We have placed a duty on the Government of Northern Ireland to implement an effective autism awareness campaign, for example using information websites and poster campaigns. It is important that we take the five points of that strategy together.
It is my belief that the rest of the UK should handle the issue of autism in a similar manner to Northern Ireland. I urge the Minister to interact with Ministers in Northern Ireland to exchange ideas, understand how our system works and find out how the legislation can be improved. If we can do that, we will have achieved a lot.
I also believe that we should implore all those involved to look carefully at the work and outcome of the Autism Act (Northern Ireland) 2011. When the Government consider their draft legislation, to which the hon. Member for South Swindon referred in his introductory remarks, I believe there is no better system, at least to start with, than that in Northern Ireland.
To be forewarned is to be forearmed. Figures indicate that the number of children with autism in Northern Ireland is rising—as in the rest of the United Kingdom—and we sense the effect that is having on society and individuals. It also impacts on people’s financial circumstances as there is a drain on the moneys necessary to deal with this condition. We must prepare and set moneys aside for that purpose.
We all know families who are affected by this issue, and they do not ask for too much or more than they are entitled to. We are being asked to give only what they need and what we can provide, which I believe is support. Above all, we need to help those children and families to have an acceptable quality of life. That has not yet been achieved, but hopefully it will be once the draft legislation is introduced.
It is a privilege to speak in this debate, and I congratulate the hon. Member for South Swindon (Mr Buckland) on persuading the Backbench Business Committee to allow it. Like the hon. Member for Strangford (Jim Shannon), I praise the hon. Members for South Swindon and for Stalybridge and Hyde (Jonathan Reynolds) for their personal insights. Such insights are critical to the debate and warmly accepted by Members on all sides of the House.
Following the hon. Member for Strangford, I want to bring a Welsh perspective to the debate. In one sense, the hon. Gentleman has usurped me. I was going to say that Wales is leading the way through the development of its autism strategy, but sadly it seems that Northern Ireland is doing that. I hesitate to say that, however, because this matter is too important for one-upmanship. Nevertheless, I agree with the tone of his remarks because there are useful pointers and experiences from Northern Ireland, Wales and, no doubt, from our friends in Scotland as well to share with the Minister.
As I said in my introduction, the Northern Ireland Assembly has a close relationship with the elected Assembly in Wales. There is a real partnership together and a way forward.
The hon. Gentleman is right and I suspect that our mutual friends in Autism Cymru, which is based my constituency, and Autism Northern Ireland have given us a similar brief about the collaboration between those two groups. Sometimes devolution can be helpful to our colleagues in England if it involves sharing good practice. We do not always get it right, but in this instance we have good examples to share with the Minister today and, in that spirit, I will explain some of those experiences. Like the hon. Member for Strangford, I can speak for my friends in Autism Cymru who would be more than happy to share some of their experiences with the Minister.
The Celtic nations partnership, which is made up of colleagues from Scotland, Wales and Northern Ireland who work together on these matters, has said:
“Developing national autism strategies supported by ring-fenced Government funding for autism is proving vital to improve the lives of people with ASD, and their families.”
Wales has had an all-age strategy for autism for four years. Since it started in 2008 some £12 million has been committed by the Welsh Assembly Government to the implementation of that strategy and, critically, to research into autism. Wales is the only nation with a national autism research centre, and it is based in Cardiff.
All 22 Welsh local authorities have an autism spectrum disorder local lead, and some have specific leads for children as well as adults. A national co-ordinator sits in the Welsh Local Government Association, and a national ASD practice website gives examples and shares practice throughout Wales. In my part of Wales, services and information are provided in both English and Welsh. As part of that process, each local authority has a local stakeholder group, and we should not understate the significance of that. This is about service delivery, people’s experiences and parents talking about their children. As the hon. Member for South Swindon said at the start of this debate, this is not about ticking boxes. Meetings and engagement with stakeholders are important. Every one of those authorities has had a local action plan in place since 2009. They are being reviewed and renewed depending on local need.
I hesitate to quote myself by saying that Wales is streets ahead, but I say that in the spirit of generosity to which I alluded at the beginning of my speech. The challenge is as great in Wales as it is in England, but we have the frameworks and structures in place to assist.
Does the hon. Gentleman take the point made by the hon. Member for Hornchurch and Upminster (Angela Watkinson) on the necessity of taking respite into consideration as part of an overall package of care?
The hon. Gentleman is absolutely right. The hon. Member for Strangford mentioned the people he has met in his surgeries, and, as I have said, I have attended stakeholder meetings in Ceredigion. We have both heard from parents about the need for respite provision, so that they can recoup their energy and strength to be the parents they want to be.
I have two concerns about the UK situation. I am pleased that my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), the former Secretary of State for Wales, and the hon. Member for Hayes and Harlington (John McDonnell), have referred to Atos. That is an emerging situation. I should like to emphasise the difficulties encountered by many claimants with autism when dealing with the Department for Work and Pensions and other Departments. There are concerns that work capability assessments, which determine eligibility for employment and support allowance, fail at their core to recognise the difficulties that people with autism face when looking for work and accessing benefits.
Communication difficulties can make face-to-face assessments very hard. People with autism can misunderstand questions and fail to pick up on inference and assumption—they might answer questions only in their most literal sense. Furthermore, interaction is a key problem with autism, so the condition does not lend itself well to a call centre culture. One constituent went without the benefits to which he was entitled for a long time because he simply could not face direct, blunt questions on the telephone without support. I was pleased that the initial work undertaken by Autism Cymru, which is based in Aberystwyth in my constituency, included going independently to Jobcentre Plus in the town to offer support and advice to the DWP staff who give advice to address some of the problems—I appreciate the complexity of doing so.
I commend Autism Cymru for its work with police forces in Wales. Four or five years ago, it developed the ASD emergency card scheme. As we have heard, many individuals with autism have become involved in the criminal justice system as a consequence of their vulnerability or their social and communication difficulties. The idea, which was pioneered in north Wales and Dyfed-Powys and rolled out across Wales, is that somebody with autism produces a card when they come into contact with the emergency services. The card not only informs the emergency service that the person functions on the autistic spectrum, but offers pointers on how communication with them can be advanced.
There are approximately 88,000 schoolchildren in England and 6,000 in Wales with autism. The majority are in mainstream schools. Therefore, every teacher—I used to be a teacher—should expect to teach a child who is on the autistic spectrum. They should also be ready to teach with, or have access to, the appropriate level of expertise. However, the National Autistic Society in Wales tells me that only 47% of parents were satisfied with the level of understanding of secondary school subject teachers. As we have heard, early diagnosis, assessment and intervention are critical. As a former primary schoolteacher—admittedly, it was some time ago now—I remain concerned, like the hon. Member for Stalybridge and Hyde, about the training available to class teachers.
I have not been involved in the all-party group on autism, but I very much endorse its call for a lead teacher in every school with specific responsibility for ensuring equality of access for children with autism. That goes beyond the requirements of a special educational needs co-ordinator. The demands on SENCOs are immense enough without the complexities and range of challenges faced by working with autistic children.
We need to give our teachers the support they need, and I am not convinced that we have done that. Anecdotally, I remember being summoned to the head teacher’s office to be told that a new girl would be joining my class and that she was autistic. I can in all honesty say that, having been a class teacher for three or four years, I had not experienced that in any other classroom. In my years of postgraduate training, I had never come across the term autistic. In fact, special needs education training in those times amounted to four or five hours in one afternoon. Teachers are often aware that they can be failing the children in their care. It is not necessarily their fault—the training needs to be available to support them.
If the debate is characterised by anything, it is the need to raise awareness: awareness not only in Government agencies and education, and—I am pleased to report, as did my friends in Northern Ireland—awareness of the progress in our countries as well. What I am sure we all agree on is that the lives of children and adults may only improve if society has a better understanding of the condition that, as we have heard, affects one in 100 children. Recent figures from the NHS Information Centre have confirmed a similar incidence in adults.
Will the hon. Gentleman give way?
I am coming to my last sentence, so very quickly.
I am very grateful to the hon. Gentleman for giving way just before his last sentence. Does he agree that the private sector also has a role to play in expanding autism awareness? I was delighted to learn only today that my local cinema, Cineworld, is working with the Dimensions social care charity to ensure that autism friendly films will be shown at that cinema. We need to spread awareness across all sectors of our society.
The hon. Gentleman illustrates how the issue transcends everything. We could compartmentalise the debate in terms of education or, as I have, in terms of benefit issues. However, it crosses every aspect of life and we need that recognition. The hon. Member for South Swindon has done us a great favour in securing the debate and I look forward to hearing from the Government. I encourage them to carry on with the steps they are embarking on.
I welcome this debate. I, too, congratulate the hon. Member for South Swindon (Mr Buckland) on securing it and on giving such a powerful and insightful contribution in his opening speech. I pay tribute to all hon. Members who have contributed to what has been a very high-quality debate. It is obvious that a lot of sincere dedication has gone into raising the profile of this issue and into fighting for support. It is good that we have the opportunity to acknowledge that, and to take stock of what more there is to do.
As has been mentioned on a number of occasions, autistic spectrum conditions affect more than one in 100 people in the UK, and in some places more than one in 70, yet an understanding of the issues faced by those with the condition is still worryingly low. That lack of understanding puts major barriers in the way of gaining education, training or employment, or an independent life for those affected. That has an inevitable impact on families and carers, something set out passionately by the hon. Member for Strangford (Jim Shannon).
I am proud of the excellent Thomas Bewick school in my constituency. It provides a specialised education for children and young people with autistic spectrum conditions, and is housed in a superb modern building funded by the Building Schools for the Future initiative. On a visit, I saw the incredibly inspiring work that the teachers, teaching assistants and other support workers undertake, and the incredible nurturing that those children receive. The most recent Ofsted report found it provided a “good” education, but it has been graded “outstanding” for, among other things,
“effectiveness of care, guidance and support”,
with the sixth form rated as “outstandingly effective” across the board. It noted that the head teacher, Audrey Lindley, has
“instilled passion and commitment in the staff team”,
and that the parents of pupils were overwhelmingly positive about the school. I witnessed that for myself, talking to many of the parents.
The school is also an important resource for the wider autism community, with parents from across the north-east region accessing the National Autistic Society’s regional information centre based at the school. A user of the centre recently told me:
“My son is still in a mainstream school, but his Asperger’s syndrome has affected our whole family. The NAS information officer is knowledgeable, approachable and experienced. Her support has been invaluable as we have come to terms with his diagnosis and battled to get him the support he needs.”
Again and again, we hear words such as “fighting” and “battling”. We have all acknowledged the battle that parents face, and we will, I hope, take steps to make that transition easier for families.
With Newcastle City council facing cuts of £164 per person—more than 10 times more than in some wealthier local authorities—the continued funding and support for the school is a credit to council leaders. At the moment, that funding is not under threat, but across the country there are concerns about appropriate education for children with autism. That education has to begin in the early years. Clearly, language development in the early stages needs the proper support and provision, so that signs of the condition can be picked up at the earliest stage. That provision has been ably provided by Sure Start, among others, which is why it is more important than ever to fight for resources and to ensure that local authorities have what they need to keep these vital services open.
There are concerns that no assurances have yet been given that the two-year grant awarded in 2011 by the Department for Education to the Autism Education Trust will be renewed. I do not know whether the Minister can comment on that. The grant funds a training programme to instruct and train 5,000 school staff in understanding and working with children with autism. As hon. Members have said, that understanding is vital, if things are to improve. The extra training is particularly important given the brevity of the training given to non-specialist trainee teachers. The vast majority of the 88,000 school-age children with autism in the UK are in mainstream schools, so good understanding and awareness among teachers are crucial to their success. However, 84% of respondents to the all-party group on autism’s recent survey said that teachers were not given enough training to teach and support children with autism effectively. That statistic will inevitably cause concern.
The NAS has also called for a trained lead teacher on autism to be available in every school in order to co-ordinate services, inform other teachers and ensure that all students with autism have access to the support they need. That could be just the factor that allows a child to stay in a mainstream school, when that is the most suitable option. I hope that the Minister will tell the House how that provision can be improved. There are also concerns about access to independent special schools, when that is the most suitable option. As it stands, the children and families Bill will leave something of a loophole, which could prevent parents from stating a preference for an independent special school for their child—even if that is the only suitable school available in the local area—because of the lack of a clear legal distinction between mainstream independent schools and independent special schools. That is a major problem, and I would like to hear from the Minister today what the Government will do to address it.
Once children with autism leave school, they still need support—a point that many hon. Members have addressed—yet the transition is not always well managed. That is why it gives me great pleasure that the Government have accepted the all-party autism group’s recommendation that support for young people with autism should continue uninterrupted until the age of 25. That should bring improvements, but as hon. Members have said, 25 should not be a cliff edge. Support needs to be ongoing for as long as those young people need it. Under the draft provisions, the local authority’s duties cease once a young person leaves school or further education—if they take up a training place, for example—and do not necessarily restart if they want to return to education. Ensuring continued support is vital for young people to make the transition to independent adulthood. The Bill should be amended to allow continued access to supported education under a specialised plan for people who leave education and then return, as well as for those who stay on.
I again pay tribute to Thomas Bewick school, and to specialist and mainstream schools up and down the country that work tirelessly to give children with autism the best education and preparation for adult life. They do a huge amount, and although we can always do more to improve, refine and ensure access to the best educational support for every child, we pay particular tribute today to those making such efforts for children with autism.
May I add my congratulations to my hon. Friend—my very good friend—the Member for South Swindon (Mr Buckland) on securing this debate? Indeed, this situation is pretty unique, because in 1995, when we were both doing our parliamentary selection board, we ended up doing a debate together. He opened for the then governing side and I closed the debate, but I never imagined that, somewhere in the region of 17 years later, I would find myself re-enacting the whole thing—albeit in much more august company than some of the people who were there on that occasion.
I initially became involved in the whole issue of autism in the 2010 general election, when I found myself receiving an enormous number of e-mails from people writing to me about it. I cannot say that I am particularly well informed about the subject, and I am sure that everybody else is much better informed—in fact I know so, because I have listened to a number of people in this debate—but I want to make one or two points. According to the National Autistic Society’s website, one in 100 people suffer from the condition. I am told that in Plymouth—which is obviously part of my constituency—there are an estimated 1,200 children who have some form of learning difficulty or are autistically challenged in one way or another. It is also interesting to note that the city council has absolutely no data whatever on those aged 18 to 25 who suffer from autism or Asperger’s.
I am afraid I have now to tell the House an incredibly sad story, which I was deeply shocked by. In early September, one of my constituents came to see me at one of my weekly surgeries to talk about her 19-year-old daughter, who suffers from pathological demand avoidance, which I understand is known as PDA. It appears that in May the police were called to Marlborough street, in a deprived part of Devonport, as her daughter was behaving in a very aggressive manner. She was arrested, heavily restrained, completely stripped and put into a body suit. I find this all quite depressing. When her mother went to Charles Cross police station, which is the busiest police station in the whole of England and second only to Glasgow in the United Kingdom, she found her daughter in quite a state. She was banging her head against the wall.
My constituent was very concerned at the treatment that her daughter had received, and she duly wrote to the authorities, including the police and Plymouth city council, to ask why her daughter had not been sectioned under section 136 of the Mental Health Act 1983, as amended by the Mental Health Act 2007. The team manager of the city council’s children’s disability team replied, saying that
“the 2007 Mental Health Act makes provision in relation to mentally disordered persons found in a public place and that they may be removed to a place of safety and may be detained for up to 72 hours to be examined by a registered medical practitioner”.
The hon. Member for Ceredigion (Mr Williams) suggested that we should perhaps ensure that people with autism or Asperger’s, whether they are teenagers or older, carry some form of identity card so that the police know who they are dealing with, rather than behaving in what I have to say can be a slightly offhand manner. I am sure that the police were doing everything they could, and in the best possible way, but this is none the less a shocking story. We need to ensure that our police officers are better and more regularly trained. We also need to ensure that mental health nurses are on duty in police stations when these kinds of issues arise, so that they can carry out an appropriate assessment.
The House last debated mental health on the Floor of this Chamber in September, during the debate on the private Member’s Bill of my hon. Friend the Member for Croydon Central (Gavin Barwell). In the debate, I talked about how I had learned, during a recent visit to Charles Cross police station, that people with mental health problems quite regularly had to be put into the cells, rather than being sent up to the Glenbourne unit at Derriford hospital in line with section 136 of the Mental Health Act. Of course I am not suggesting that everyone with mental health problems who ends up in that police station suffers from autism or Asperger’s; I am simply making this point.
It appears that the constituency case that I have described was not a unique incident. My local police feel that this is an inappropriate way to deal with these people, and that it can in some cases make matters worse. I also understand that the custody officers have not received the necessary training. They would welcome a qualified mental health nurse being attached to their unit.
The team manager of the council’s children’s disability team also said:
“Police Officers regularly deal with violent and aggressive people and it is common for some of these people to suffer from a variety of conditions including autism.”
He added that there was no standard practice for dealing with young adults who suffer with autism, and that each situation had to be handled by the police as they saw fit.
On 6 September, in the wake of my constituent coming to see me, I asked the Minister for Policing and Criminal Justice, my right hon. Friend the Member for Ashford (Damian Green), what training police officers receive on dealing with people with mental health issues. He replied that, on joining the police, all officers undertook a two-year initial police learning and development programme. However, the training does not appear to continue on a regular basis thereafter. On that programme, police officers and police community support officers are provided with training in dealing with people who are vulnerable.
I understand that the authorities are now taking action to provide the facilities that are needed in Plymouth. I would like to take this opportunity to thank the city council, the local police and Plymouth’s health managers for listening to my pleas during the September debate and for taking action. In the run-up to today’s debate, I was contacted by the National Autistic Society’s public affairs people, who told me that they too were pressing for more training for our police officers. I hope that that request will be taken on board.
I congratulate the Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb). He is not a member of my political party, but when he spoke on BBC Radio 4’s “The World this Weekend”, he said that he was on a learning curve on this issue, and any politician who can admit to that deserves to be listened to. There was an issue, as some may have heard, about an 11-year-old child who ended up being taken into a custody suite, and the Health Minister said that there has to be much more co-ordination of health services, police and local authorities so that they work much more closely together. I agree with him that there are some limited circumstances in which a youngster, perhaps for their own safety, has to be placed somewhere, but this has to be the absolute exception rather than the rule. We need to ensure that they are put into the right places for youngsters of that age—not necessarily into an adult custody suite. Although it may be the case that this practice has always happened—that it has always been this way—frankly, I do not think it should be allowed to carry on. Earlier this year, the Minister said that £34 million was being spent over the four years to 2014-15 on better mental health care for our children and young people. I think that is very important.
Finally, I am aware that many parents who have autistic children—they may be teenagers, but they may also be in their 20s and 30s—and who are now retired are very worried about the provision that is going to be made when they are no longer there to take care of their children. We must certainly try to ensure that we do not just ignore those autistic people and say, “I’m sorry, but you’re now an adult, so you should be able to cope for yourself.” I am afraid that that is not the case.
Those people who care for their children with Asperger’s or autism are, I think, fantastically good carers, and they need to be rewarded in a fundamentally important way, but we need to make sure that they also realise that there is help for them. Some large teenagers and those who are a bit older can, unfortunately, just sit on their parents, which I think can be quite intimidating.
I very much welcome the call for a more joined-up approach and greater co-ordination between the authorities, such as our health services and our police, but we also have to ensure that there is a system in place to look after these autistic adults for all their lives, not just for when they are teenagers and youngsters.
rose—
Order. I am looking to start the winding-up speeches at 6.30 pm.
I, too, wish to pay tribute to my hon. Friend the Member for South Swindon (Mr Buckland), who has been a champion for people with autism and their families. I thank him for the opportunity he has given us to raise issues of great importance to our constituents. His debate is timely, not just because of the anniversary mentioned by my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), but because the Palace of Westminster is being visited today by PAWS—Parents Autism Workshops and Support—which was set up by Dogs for the Disabled to bring together parents and carers of children with autism to share their experiences and explore the helping potential that a dog might have within their family. I pay tribute to its work and to the work of all the volunteers, whether they be bipeds or quadrupeds.
High special educational needs are well catered for in my area, but middle to low need provision is much more patchy. Autism, Asperger’s, pragmatic language disorders and dyslexia make up a huge amount of my casework. I have huge admiration for the parents who come to my surgeries and are fighting for their children against a system that sets their kids up repeatedly to fail before any help is at hand. The daughter of my hon. Friend the Member for South Swindon is lucky to have him as her dad, as we all know that he has skills and is able to make the case against a local authority or other agency. Many of the parents we deal with are not similarly equipped, so it is great that we are speaking up for them.
Let me touch on some of the main challenges that parents present to me in my surgeries, many of them echoed in previous speeches. The first is getting a statement. It takes a huge amount of time, as the process is not synchronised with the school year or other events going on in the child’s life. We need a much more pragmatic and flexible approach to the evidence we gather. The process of getting a statement sometimes seems to be an excuse for doing nothing in the meantime. Considering that it can take 12 months or more in some cases, I think that is a scandal.
Secondly, there is a huge lack of information for parents out there. Local education authorities are supposed to publicise provision regardless of the sector in which it sits, but they certainly do not do that in all cases. Often parents who are trying to establish what are the best options for their child will receive a letter from the LEA saying merely that their needs will be taken care of by school action plus. When they try to find out what that actually means—what practical stuff will be done, by whom and where—the only words that keep being sent back to them are “school action plus”.
Parents do not have enough clout. It does not matter what a tribunal says or whether they win an appeal, because too many local education authorities are still refusing to act. They have no say in budgets, and we have already discussed at length the problems of transition post-16 and post-18. This is not just a nightmare for the children and their families; it is also a really poor use of the education budget. A young boy in my constituency who should now be in his GCSE year has never obtained a secondary school place. A travel grant would have sorted that out, and it would have been peanuts in comparison with the cost of the interventions that will have to be made in that young man’s life further down the road.
My office has done a lot of work on cost. When we were fighting to get children the school places that they needed—we dealt with many cases—we set up a bursary scheme, thanks to the generosity of some local charities and London livery companies. In one case, we paid for the first two years of a young girl’s secondary school education. We worked out that there was an £180 difference between the per-pupil cost of sending her to the mainstream school to which the LEA wanted to send her for the remaining three years of her education and the cost of sending her to the independent school, which was the only school in the area that could cater for her special educational needs. That is a scandal in itself, but we then submitted a freedom of information request which established that the amount that the LEA had spent on the legal fees and officer time involved in the fight against sending the girl to the school to which her parents had wanted to send her outweighed the cost of sending her there in the first place many times over.
I am very pleased about the reforms that the Government are introducing. They address all the points that I have raised, they are long overdue, and I am sure that they will resolve many cases. However, I am still sceptical, and I hope that the Minister will understand why. I am not sure that we shall be able to get all LEAs to act, and to embrace those reforms. We know from our experience with the National Institute for Health and Clinical Excellence in the field of health care that the setting out of a clear vision of what people should have, and a constitution that enshrines what they are entitled to, is no guarantee that they will actually get it.
Perhaps the Minister will say whether he would be interested in looking at some of the cases with which I have been dealing. I think that they are very enlightening. Perhaps he will also say whether, if the education reforms are ignored, he will boot some of the LEAs up the backside when they consistently fail to do the right thing by our children.
It is a pleasure to see you in the Chair today, Mr. Speaker, given your keen interest and great work in this particular area of policy.
Let me begin by paying tribute to the hon. Member for South Swindon (Mr Buckland). I congratulate him not just on securing this important debate but, more widely, on the work that he has done, and continues to do, in raising the parliamentary profile of autism spectrum disorders through his excellent chairmanship of the all-party parliamentary group on autism. His personal testimony today, when he spoke as a parent, was particularly powerful. As a parent of a child with social educational needs, I could certainly identify with it, as, I am sure, could other Members in the same position. He is, of course, ably assisted in his stewardship of that very active all-party group by a number of Members, including my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds), who also gave powerful personal testimony of his experiences as a parent.
In my capacity as a shadow Minister, I was delighted to be asked to take part in the all-party group’s review of education for children and young people with autism. Sadly, my time slot for giving evidence was severely curtailed because the Minister’s predecessor, the hon. Member for Brent Central (Sarah Teather), substantially overran in making her contribution—as, I have to say, was her habit. I would like to take this opportunity to welcome the Minister to his post, and I promise that I will not do that to him today.
The all-party group’s review took place at about the same time as the Labour party’s review of SEN policy, which I led. The all-party group was assisted in its work by the National Autistic Society, and we on the Labour panel were ably assisted in our review by a young man called Andrew Rhodes, who was one of the NAS young ambassadors, and who I am sure is watching our debate today.
I have read the all-party group’s report and there is clearly a lot of common ground between our reviews, particularly on the need to support young people on the autism spectrum or who have other special educational needs in their transition to adulthood and helping those who, given the right support and opportunities, are capable of working.
The main statistic on which the National Autistic Society hung its “undiscovered workforce” campaign was that fewer than a quarter of people with autism are in work, with just 15% working full time, but four out of five people with autism who are reliant on benefits want to work, and believe they can do so. I know from my constituency postbag that the Government are very keen on telling people they are fit to work when they clearly are not; my hon. Friend the Member for Hayes and Harlington (John McDonnell) addressed that subject. There are also, however, young people who are desperate to get out there and work, yet who are often not given the right support to overcome the challenges they face. They may also face discrimination from employers, who see their disability rather than their abilities.
There are, of course, exceptions to that rule. I had the privilege of visiting an organisation in Sunderland called Autism Works, which provides job opportunities and career guidance as well as support for young autistic people in the local area. It provides a safe environment, where staff are confident about dealing with the changes in behaviour of some of the young people who work there. Chris Mitchell, who is on the spectrum himself, and the rest of the staff were keen to stress that, given the right attitudes and a degree of flexibility from colleagues and line managers, those young people can be a real asset to lots of organisations.
As the right hon. Member for Chesham and Amersham (Mrs Gillan) said in her customary well-informed speech, people on the spectrum are often particularly skilled in a number of areas, such as computers and science, which are highly valued in the modern work force, as well as repetitive tasks such as those the right hon. Lady highlighted. I am sure that many organisations are beginning to realise that—thanks in no small part to the work the NAS did as part of its “undiscovered workforce” campaign, as well as the excellent campaigns Members of this House have led over many years, including the first one I was involved in, as a signatory to the right hon. Lady’s private Member’s Bill, which has now become the Autism Act 2009. I am sure its provisions are making a real difference to the lives of young people and adults with autism.
I would like the Minister to say how the Government will support young autistic people into work, and how his Department, as well as the Department for Work and Pensions, the Department for Business, Innovation and Skills and the Cabinet Office, can encourage employers, including the public sector, to look beyond the outward manifestations of conditions such as autism, and not deny so many people the opportunity to prove that they can be a valued part of their organisation.
Other issues with the transition to adulthood were discussed in an excellent Adjournment debate a few weeks ago, to which the Minister responded. Concerns focused particularly on opportunities for further education and training, and on young people on the autism spectrum having the same opportunities as other young people, which other hon. Members have mentioned.
In the time available, I want to consider the experiences that arise earlier than that and to talk about the school journey, which is ultimately the main determinant of a young person’s options at 16, 18, or 25. Another recommendation in the all-party group’s report that chimed with what came out of my review of SEN policy more widely concerned the need for teachers to know about high incidence special educational needs and disabilities, including ASDs, and to be equipped with the skills to adapt their teaching to get through to young people and manage certain behaviours. The issue has come up time and again while I have held this brief, and not just while I was conducting the review. It was also raised in a number of speeches from Members on both sides of the House today.
One in five young people is identified as having an SEND, so in every class there is likely to be at least a handful of people who require extra support. That means that every single teacher is a teacher of SEND pupils, as the hon. Member for Ceredigion (Mr Williams) highlighted powerfully from his personal experience. Not every teacher is given the skills to allow them to be a good teacher of SEN pupils, as my hon. Friend the Member for Newcastle upon Tyne North (Catherine McKinnell) said in her thoughtful speech. If we expect our teachers to be good teachers for every child in their class, as we should and we do, we must give them the skills and knowledge they need to live up to that expectation.
We are therefore considering how we can ensure that every new teacher undertakes a minimum module on SEND as a mandatory part of their initial training—not an optional part, as it is at the moment. It will cover identifying and adapting teaching for high incidence conditions and managing sometimes challenging behaviour in the classroom. We are also considering saying to schools that they need to give due prominence to special educational needs such as autism in their continuous professional development strategies. One in-service training day a year could be given over to promoting good practice on inclusive teaching, sharing best practice and experience, and refreshing knowledge on SEND. One in five of the training days for the one in five pupils with SEND seems fair to me.
Our plans are not about creating specialists, although some might decide they want to go on and do that. We certainly need specialists at a local level to drive improvements across a council area. They are about giving every teacher the best possible chance of being able to teach the class in front of them.
I also want to consider how to raise the status of SENCOs, which we heard about today. We need to look to them to lead and improve practice in their schools. We want the best teachers to aspire to take on the role, but anecdotal evidence suggests that that is not always the case. By raising their status, for example by saying that SENCOs should be part of the senior management team within a school, I believe we can positively influence the choice of individual to perform the role, incentivise good teachers to work towards becoming a SENCO and increase the clout they have in schools to drive improvements. I think that the combination of these measures will vastly increase the quality of provision for children and young people in mainstream settings.
Of course, there will be children and young people on the extreme end of the spectrum for whom mainstream classrooms will not at the moment be the best place for them to be educated. In many such cases parents look to the specialist expertise and facilities in our non-maintained and independent special school sector, which my hon. Friend the Member for Stalybridge and Hyde spoke about movingly from his own experience. A major concern is that although the draft clauses in the Bill provide for non-maintained schools to be named on an education, health and care plan, they do not extend the same provisions to independent special schools, in which about 8,000 children and young people are currently placed. I believe that is because of concerns in the Department about how to define an independent special school, but in a written answer to me the Minister responsible for education and child care, the hon. Member for South West Norfolk (Elizabeth Truss), stated that no work had been undertaken to try to devise one. The Under-Secretary, the hon. Member for Crewe and Nantwich (Mr Timpson), had the opportunity to address these concerns at the Select Committee hearing a couple of weeks ago, but did not do so. I therefore give him the opportunity today to set people’s minds at rest. I urge him to devise a designation or approval system for independent special schools, so that they can continue to provide the excellent support that 8,000 families currently rely on.
One aspect that is not always discussed when we debate provision for children and young people with additional needs is the needs, and indeed the competencies, of the wider family. This was powerfully expressed by the hon. Member for Strangford (Jim Shannon) in his contribution. All hon. Members who have come along to this debate will probably know from personal experience, as we heard so movingly on a number of occasions today, or from constituency cases that having a child with a special educational need or disability, particularly where that manifests itself in challenging or aggressive behaviour, as in some cases of Asperger’s or severe autism, such as in the second case that the hon. Member for Plymouth, Sutton and Devonport (Oliver Colvile) shared with the House today, can be extremely stressful for parents, siblings and other family members, and cause a number of problems, such as mental and physical health issues, or the inability to stay in or perhaps to take up work.
Supporting a child’s family to understand how to cope with and cater for the child’s SEN or disability is often the most cost-effective intervention, and should be encouraged, as the hon. Member for Portsmouth North (Penny Mordaunt) said eloquently in her speech. Early intervention in such cases saves money, whereas over-estimating a family’s ability to support a child can be detrimental to all concerned. It can aggravate certain problems, negate efforts and resources spent elsewhere, contribute to family breakdown, and increase the likelihood of the care system being involved.
We brought in short breaks, which can help families immensely, as we heard, and I welcome the Government’s continued support for them. But as important and valued as they are, in the end they are just that—short breaks, in what can be and usually is a 24-hour, seven-days-a-week caring role. When all the professionals who we are promised will come together to draw up the education, health and care plans, it would surely be an effective use of their time together in one room to consider the needs of the whole family, rather than just the child as an individual.
That would mean assessing the family’s resilience and ability to cope, which differs from family to family; providing or recommending support specifically for family members, where appropriate; and if there are siblings who are also in education, ensuring that their school gives them support to overcome the unique challenges that they may face at home, whether that is just the fact that they do not have a quiet place to do their homework, or the fact that they are fulfilling a caring role themselves and do not have the time or energy to do their homework.
I end my remarks by praising the hon. Member for South Swindon again for securing this important debate, which has been an excellent opportunity for hon. Members to emphasise the priority that we all place on improving outcomes for children and adults with autism. There will be many disagreements along the way, I am sure, but Labour will strive to work with the Government and all parties to ensure that the children and families Bill is the best Bill it can be, and that it will deliver real, positive change to provision for autistic young people and their families.
This has indeed been a truly excellent debate. I join all those in the Chamber today in congratulating my hon. Friend the Member for South Swindon (Mr Buckland) on securing so much time in the main Chamber for what we all agree is a very important subject. As the parent of a child with autism, whom I was privileged to meet last week, my hon. Friend has championed the cause of all children and young people who are on the autistic spectrum with such diligence, passion and vocation. It is a testament to him that in his constituency the Swindon SEN Network is proving to be a real help to many children. I am pleased to be able to pay such a heavy tribute to him.
I should also pay tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for her work. She was instrumental—indeed, she played a pivotal role—in getting the landmark Autism Act 2009 on to the statute book. The impact of that Act continues to resonate to this day. I also pay tribute to you, Mr Speaker, for your work to make many more people aware of the plight of young people with autism. I am pleased to learn that, in Baroness Browning, the hon. Member for Hayes and Harlington (John McDonnell) and I have a mutual friend—not something I ever expected—and that we are both benefiting from her vast experience. Finally, I join others in praising the work of the all-party group on autism, its Chair, my hon. Friend the Member for South Swindon, and all the officers here today.
I thank all hon. Members who have contributed so constructively to the debate. It is heartening to hear that there is strong cross-party support for the general thrust and direction of our reforms. I shall endeavour to cover as many of the points made in the debate as I can, but if fail to do so in the short time available to me, I shall of course answer in writing to the hon. Members who made them.
My hon. Friend the Member for South Swindon spoke about his personal experience. He explained how he and his family had been through the mill because the system had not worked and how, like many parents, he felt that there was an obsession with process and categorisation, rather than with outcomes for children with autism. I shall try to answer that and many of the other points he made in the body of my speech.
The hon. Member for Stalybridge and Hyde (Jonathan Reynolds) also spoke from personal experience of bringing up a child with autism. His was a powerful and thoughtful speech, and I shall pick up one or two of the points he made now, because they are important. He talked about parents’ rights, and I intervened on the hon. Member for Hayes and Harlington to clarify the point, which I also discussed with the Select Committee. The new system of education, health and care plans will carry through all the rights that parents have under the current statementing system—in fact, they will be extended in some circumstances. Young people will also have additional rights, such as to choose the type of further education establishment they attend, and we will also run pilots in which children have the right to take cases to tribunal. In no sense are we attempting to diminish the rights available to parents; instead, we are trying to enhance them. The legal force of an education, health and care plan will be the same as that of a statement. I hope that that gives the hon. Gentleman some reassurance.
Parents across the country will be reassured by the Minister’s statement. What form does he believe that provision will take? Will it be made by amending the Bill, or through secondary legislation and regulations? If that is the case, perhaps members of the all-party group could be part of the process, to help make the legislation as effective as possible.
The legislation we have is in draft form and is undergoing pre-legislative scrutiny. We are listening carefully to all the concerns raised by parents and others to make sure that, as all speakers have said this afternoon, we get it right. Where it is not clear, we are happy to look and to make sure that it is absolutely clear. Of course, with the code of practice and regulation to come, we have the opportunity to set out in more detail how everything will hang together and play out on the ground for parents. I was pleased to hear the hon. Member for Washington and Sunderland West (Mrs Hodgson) say that the Opposition want to play a role in developing that.
Will my hon. Friend carefully consider the point I made about the need to make sure that the code of practice is enshrined in secondary legislation, so that there can be both certainty and, if and when it needs to change, flexibility, as it will be a living document?
I understand my hon. Friend’s point. He knows that the current code of practice, because of the parliamentary resolution required, has not been changed since 2001, and that creates anomalies—for example, it refers to agencies, such as the Learning and Skills Council, that no longer exist. To make it a living document, we need to be able to keep it up to date and in the proper form that reflects current practice. I shall consider his point and I am sure that we can take it up as the Bill goes through Parliament.
I was trying to give some impression of the thrust of individual Members’ contributions. I want to address some of the points raised by my right hon. Friend the Member for Chesham and Amersham, particularly in relation to independent special schools and the ability of young people and parents to have a preference in their plan. That was also raised by the hon. Members for Newcastle upon Tyne North (Catherine McKinnell) and for Washington and Sunderland West (Mrs Hodgson). As I told the Education Committee, we are working closely with independent special schools to try to get over the hurdle of the legal difficulties and the definition. We hope to resolve those difficulties, because there is a growing consensus that we should have as much involvement with all the schools that parents might want to send their children to as the most appropriate places for them to be educated and to have the support they need. We are hopeful about resolving that, so I hope that reassures hon. Members that it is something we are working on. As I have said previously, we want to ensure that we get that right and do not end up with something that proves undeliverable, as that would not be in the best interests of the children we are trying to help.
In relation to the adult autism strategy, I again pay tribute to my right hon. Friend the Member for Chesham and Amersham for the work she has done. The review is coming up next year, between March and October, and I want to re-emphasise the importance of a cross-departmental effort to ensure that the strategy develops in as co-ordinated a way as possible across Government and that it is not simply taken up by one or two Departments. I am happy to talk with her about how we can achieve that and ensure that every Department plays its part.
Several Members, including my right hon. Friend, mentioned the work capability assessments and Atos. That is obviously something that has been running for some time. The third independent review of how the assessments are functioning has now been published by Professor Malcolm Harrington. It states that real progress on improving the assessment is
“beginning to change positively in the best interests of the individual”.
There are ongoing concerns, as hon. Members have mentioned, and I will be happy to write to the relevant Minister in the Department for Work and Pensions so that they can consider the points that have been raised. The health professionals recruited by Atos or Capita must demonstrate the appropriate skill in assessing people with conditions affecting mental health and intellectual and cognitive functions, and that includes taking into account their history and observing their ability to perform relevant tasks. That should also include those with autism. I take on board the point that has been raised and am happy to share that with the relevant Minister in the Department for Work and Pensions.
Even during the course of this debate I have been tweeted by someone in Yorkshire who says that she is working with the Department for Work and Pensions on identifying hidden impairments. Will the Minister ensure that work is really co-ordinated across all Departments so that we maximise on this and do not consign people to the scrap heap because we have not had the right people in the right place making the right assessments?
I cannot resist offering my right hon. Friend the answer I gave earlier, which is that it is important that the Government work in a co-ordinated way across all Departments. Of course, I am sure that is something we can try to ensure through my correspondence with the Department for Work and Pensions.
The hon. Member for Hayes and Harlington touched on a number of important issues in his contribution. It is good to hear that the trade union movement is stepping up to the plate and looking at the important role it can play in ensuring that autism is thought about carefully when the working environment is considered. On his point about appeals and whether there will be any dumbing down of the right to appeal through the tribunal process, we will in fact be widening the right to appeal. If he looks at clause 28 of the Bill, he will see that it is not just parents who will be able to appeal; young people over the compulsory school age will also be able to. As I iterated only a few moments ago, we are piloting the role children might be able to play in challenging any decisions made on their behalf.
In relation to the restrictions on legal aid, the current arrangements will continue as before. I certainly remember that my hon. Friend the Member for South Swindon was instrumental in some of the elements that ensured that legal aid will continue in this area. Over and above that, it will also be available to young people if they decide to take any of these cases to tribunal.
Another point that I raised related to clause 39 on the responsibility on the local authority to use its best endeavours, which replaces the obligation on it to implement the statement. Will there be any discussion or reappraisal of that?
No. The “best endeavours” provision relates to the school as opposed to the local authority, which will still have the duty that exists now. I am happy to put that in writing for the hon. Gentleman, but I hope that that clarifies his point.
My hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) told us about her visit to TreeHouse school, which I understand has just received an outstanding Ofsted inspection rating, so I congratulate it on that. She also told us about the great work that Squirrels residential unit in her constituency is doing, and about the importance of ensuring that those who turn 16 do not have their opportunities narrowed as a consequence of their reaching that age.
The hon. Member for Strangford (Jim Shannon), who decided that I might have some culinary skills that I did not know existed, invited me to look carefully at how the reforms on autism are playing out in Northern Ireland. I am happy to do that, both in relation to how they have worked well and to how we can perhaps learn some lessons where they have fallen short of the expectations that were placed in the legislation.
I am grateful to the hon. Member for Ceredigion (Mr Williams) for his contribution and for his invitation for me to look at what is happening with Autism Cymru and the all-age strategy for autism that has now been running for four years. His experience of teaching prior to coming to this House has clearly given us the benefit of his ability to be a strong contributor to the Bill as it moves forward, and I look forward to his future contributions.
The hon. Member for Newcastle upon Tyne North (Catherine McKinnell) told us about Thomas Bewick school in her constituency and the inspiring work that it is doing for children with autism. She asked about the work of the Autism Education Trust. For the past two years, the Department has grant-funded the AET to the tune of £1.2 million, but I am pleased to say that there is now a further opportunity for it to apply for the grant that we have offered for the next two years as part of our voluntary and community sector grant funding, as well as a further contract for work with children with autism. I hope that the AET will look at that and see that it could put in a strong bid that we will be able to consider.
My hon. Friend the Member for Plymouth, Sutton and Devonport (Oliver Colvile) told us about a troubling case in his constituency and the importance of training police officers, which comes to the fore when they are dealing with people with mental health problems and those who may display behaviours which, if officers do not have awareness of the condition, may lead them to make a decision that is not based on the best interests of those individuals.
My hon. Friend the Member for Portsmouth North (Penny Mordaunt) told us about the parents autism workshops and support project, which I need to learn more about to hear about how it is helping many young people in a very innovative way. She asked whether I would like to hear more about the cases that she has raised. Yes, please; we are still at a listening stage in the pre-legislative scrutiny of the Bill, and anything that can enhance my knowledge and understanding of the effect of the current system on parents and young people can only help to ensure that we get the whole Bill right throughout its passage and into the implementation stage.
I thank the hon. Member for Washington and Sunderland West for her welcome invitation, as I see it, to work closely and collaboratively in trying to ensure that we get the Bill into the best possible state that it can be so as to help and benefit as many young people and children as possible all the way through from the ages of 0 to 25, as the new reforms will. I look forward to those discussions as we move forward. She is right that young people with autism are a huge asset to our society; they enrich it, and we should always remember that. We should not forget that they want to make a positive contribution, and we should do everything we can to make sure that they can do just that.
There are many more things that I wanted to say and I am sorry that I do not have more time to do so. I am pleased that the debate has managed to flush out many of the issues that are troubling parents as we move forward with the Bill, and that it has given me an opportunity to reflect on many of the excellent points made by Members across the House. As the Minister charged with reforming the SEN system, I am under no illusions about the importance of getting this right. I thank all Members for their excellent contributions and look forward to continuing our discussions as we move through the stages of the Bill. Finally, I commend my hon. Friend the Member for South Swindon for his great work.
Question put and agreed to.
Resolved,
That this House has considered the matter of autism.