HC Deb 15 October 2002 vol 390 cc288-96

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Caplin.]

10.1 pm

Mr. John Bercow (Buckingham)

Interest in the House in autism has been reflected since 1 May 1997 in 154 written parliamentary questions, eight oral parliamentary questions, nine early-day motions and, on my reckoning, at least three Adjournment debates. Those important Adjournment debates on the subject of autism have respectively been initiated by the distinguished chairman of the all-party group on autism, the hon. Member for South Thanet (Dr. Ladyman), by my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning) on the specific subject of Asperger's syndrome, and. finally, by the hon. Member for Ilford, North (Linda Perham), whose debate took place, fittingly, on 9 January this year, very close to the start of autism awareness year.

Right hon. and hon. Members who take an interest in this subject will doubtless also be conscious that next month will see a further initiative from Autism in Mind, another important campaigning organisation in this field, which will stage a lobby of Parliament. I am, therefore, especially gratified—on this, our first day back after our lengthy parliamentary recess—to have the chance to raise with hon. Members this important issue. I do so conscious of the assistance of the National Autistic Society in general, and of its policy and campaigns manager, Steve Broach, and its parliamentary officer, Senay Camgoz, in particular. They have briefed me. I am not an expert, but I am doing my best to highlight issues of great importance to many of my constituents and to many constituents of Members on both sides of the Chamber.

I begin with a brief consideration of the definition and prevalence of the condition of autism. It is a lifelong developmental disorder that affects the way in which a person communicates with and relates to the people around him or her. It is important to understand that there are many different variants on the theme of autism. We are, after all, dealing with individuals. Some conditions involve learning disabilities, others do not. So there is a great variety. It is, therefore, fitting that the professional experts in the field have come up with the term "autistic spectrum disorder" to embrace the various different forms of the condition which people experience.

It is estimated that about 520,000 people in this country are autistic. To put it another way, 60 per 10,000 children under the age of eight are involved. That is a substantial number of people. Whatever the differences in their condition and needs, one thing that they have in common is, as one distinguished commentator on this subject has observed, that they suffer from a triad of impairments: an impairment of social interaction; an impairment of social communication; and an impairment of imagination.

Inevitably, we are all influenced in our thinking and pronouncements on this subject by constituency cases—local examples that have inspired us to think further about a subject about which we perhaps knew little. I have been approached by the mothers of Luke Bennion and Ethan King in the Vale of Aylesbury, and they have told me of the harrowing ordeals that they and their children have undergone in pursuit of equity and service. Equally inevitably, as the House will understand, the case with which I am most familiar and about which I am most immediately concerned is that of my constituents, Pamela Keszei and her son, Christian.

Their story is instructive and I am sure that it will have many parallels in the constituencies of other hon. Members. When Christian was three and a half years old, a health visitor suspected that he might be autistic. The suspicion was not confirmed and no diagnosis was given. The family moved from Ruislip in Middlesex to Stone in my Buckingham constituency. It was fully five years later, when Christian was eight and a half years old, that he was diagnosed as autistic. That was after no fewer than three requests for a statement of his special educational needs. He went to a mainstream primary school in Stone. He had one hour a week of speech therapy and, I am horrified to reveal, only one hour per half term of specialist teaching.

Christian has now moved on, temporarily, to a mainstream secondary school, Mandeville upper school. At that institution, he has one hour a week of speech or language therapy and one hour a fortnight of specialist teaching. His overall package of assistance amounts to only half a day's education each day of the week. He is at the school for three hours a day with the support of a dedicated, but non-specialist, teacher and one helper.

In trying to form a picture of what Christian has suffered, it is important to retrace a step. When he was at primary school, he suffered bullying so regular and severe as to cause him to try to commit suicide on no fewer than three occasions. I have conversed and corresponded with Pamela Keszei. She is a remarkable and courageous lady. Her family has undergone the most appalling ordeal. Under the strain, she and her husband are now divorced. She faces childminding costs of £100 a week on average and will shortly have to resign her job as a manager for Age Concern in Aylesbury. She will almost certainly be condemned to live, against her will, on benefits. She may ultimately lose her home. She has focused, almost to the exclusion of everything else in her life and as she has had to do, on the needs and interests of her child.

I salute the indomitable will of that lady and those who support her, but I am horrified that she and her son have been failed by the system at every turn. People who know about the subject will readily testify that autistic children find it especially difficult to deal with change. However, Christian has been obliged to face change in the form of an interrupted education. He will have the chance in May to go to a special school in Princes Risborough that focuses more on education than life skills, although his mother and others would prefer a service that focused more on life skills than education. Remember how much ground has to be made up. That is the experience that that young lad has suffered, but it should not have been necessary.

We ought to take account of the testimony of Dr. Ann Rowland, Christian's clinical psychologist. Underlining the point about change, she says that Christian is a boy who finds change extremely difficult and anxiety provoking". His mother continues to wage a relentless battle for due entitlement in the form of a tailored package of personal care for her child.

I want to put a series of legitimate challenges to the Minister in a non-partisan spirit. I shall raise three issues. The first concerns diagnosis, and the reality is that we face a postcode lottery. In 1999, the National Autistic Society discovered that 40 per cent. of parents had waited at least three years for a diagnosis, and that 65 per cent. of them had to see at least three professionals before a diagnosis was given. I know of cases in which as many as 10 professionals have offered a miscellany of different and sometimes hostile opinions to each other. Other hon. Members may be familiar with similar cases.

All too often, it has appeared that the determining factor in what has been on offer has been the availability of services rather than the needs of the child. That has to change. The system has to be flexible enough to adapt to the needs of the individual child because, manifestly, in cases of this kind the child cannot be expected to be flexible enough to adapt to the needs of the system.

We now have the national initiative on autism: screening and assessment. It is designed to provide an assessment of the current situation, to develop a template of good practice, to encourage multidisciplinary assessment teams, and to propose a framework for training that would facilitate the earliest possible introduction of the new guidelines.

My first challenge to the Minister concerns the NIASA guidelines, which are due to be published in early 2003. Will the Government pledge to support those guidelines and to enable their national roll-out, thereby tackling the postcode lottery and ensuring consistency of diagnostic practice across the country?

The second problem is the gap between diagnosis and access to services. The Minister and other hon. Members will know that Early Bird and Help! are two National Autistic Society schemes that inform parents and others of their entitlements. Will the Government support the development of information and advice systems that effectively empower parents? A related and no less important point has to do with the gap that exists for many children between the expertises of professional agencies. Children do not always fall neatly into categories. Will the Government undertake to issue guidance to social services departments across the country to enable each autistic child to undergo an assessment under the National Health Service and Community Care Act 1990, and to ensure that local authorities create pathways for effective support for families with children who experience autism?

The third real challenge relates to education and training. I referred earlier to the possibility that 60 children in 10,000 were involved, but the most recent research from the National Autistic Society suggests that as many as one child in 86 in schools is affected by autism. Whatever the numbers involved, it is essential that the school environment be responsive to the needs of those children, but 72 per cent. of schools have told the National Autistic Society that their teachers are unsatisfactorily trained in that respect.

My request to the Minister is that she tell the House whether the Government will instruct local education authorities to train teachers, assistants and all specialist professionals in awareness and understanding of autism, as part of their responsibilities under the Special Educational Needs and Disability Act 2001.

In making this request—and I have made all these requests, as the hon. Member for Dumfries (Mr. Brown) and others will be aware, on behalf and with the support of the National Autistic Society—I simply remind the Minister of the campaigning involvement of the Parents Autism Campaign for Education, yet another key body in the field. It highlights in its literature the work of the Mental Health Foundation whose research suggests that even moderate increases in educational provision could result in major savings in later living costs.

This issue is not the subject of cross-party wrangling; it is, thankfully, the subject of cross-party co-operation, and I welcome that. I acknowledge that the Government are concerned about the issue and are taking a number of steps to improve provision which, despite all I have said—legitimately and with sincerity on behalf of my constituents—is much better than at one time it was. The numbers of people that we know to be experiencing autism are not necessarily that much greater, but reflect improved diagnosis. However, much still remains to be done.

I am sure that the Minister will make a constructive, helpful and informative speech. I wish to hear that speech, so I shall therefore sit down.

10.16 pm
The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears)

I congratulate the hon. Member for Buckingham (Mr. Bercow) on raising this extremely important issue on the first day back after the summer recess. That is an indication of how important the matter is to increasing numbers of families throughout the country who have to cope with the severe problems experienced by children with a whole range of autism spectrum disorders.

As the hon. Gentleman said, autism is a complex and distressing condition for those directly affected by it and for their families and carers. The pressures can be immense. Children with autism often lead isolated lives; their social and communication difficulties place great stress on their families. I acknowledge the tremendous contribution made by families and carers in these difficult situations. It is clearly the responsibility of Government, nationally and locally, to put in place good, effective support services. Without their carers and families, the lives of these children would be much worse.

The hon. Gentleman acknowledged that there have been difficulties in this area for many years. The number of children who have been diagnosed with autism has increased recently, but it is primarily a result of better diagnosis and assessment that we are beginning to see the extent and scale of the problem. In years gone by, autistic children were almost the forgotten children with the hidden problem. We are beginning to uncover how great the problem is for communities.

The hon. Gentleman is right that the Government have taken a number of positive and practical steps. I accept that although much has been done in this area, there is a great deal more to do by all Government agencies—social services, education, local authorities and the voluntary sector. They need to pull together and put in place a package of support on which families, carers and children can rely.

The main issues that parents have raised concern early diagnosis, early intervention and early support. The evidence is that the earlier these matters are addressed, the better the long-term outcome is for the children and their families. Parents want quick and easy access to statutory and voluntary services. No one party has a monopoly on the provision of these services. It is important to ensure that a variety of diverse providers can meet the needs of these children. Parents also want straightforward, readily available information. They sometimes find themselves in a maze of different assessment, processes and organisations and do not know where to turn.

The overarching issue is about multi-agency planning and assessments. We talk, perhaps a little glibly, about joined-up thinking and services, but I can think of no better example of an area in which lack of integration means poor services for the families concerned.

I will deal with the three specific issues that the hon. Gentleman raised, but I should like to set out the way in which the Government are trying to introduce quality and rigour into the area. It is necessary to have a decent legislative framework, which has not been in place in the past. The Special Educational Needs and Disability Act 2001 strengthens the support given to parents of children with special educational needs. In the past, finding a way through the legal process has often been a minefield for parents. I speak as a former local authority education lawyer, so I know the difficulties that parents have struggled with there.

We also introduced the Carers and Disabled Children Act 2000, which gives people greater flexibility. The introduction of direct payments starts to give people more choice about the sort of services that they want provided. The inspection and regulatory standards of the Care Standards Act 2000 are very rigorous, enabling us to get some quality into the system. The Children (Leaving Care) Act 2000 supports all children with disabilities, including those with autism and deals with some very vulnerable children indeed.

We have a legislative framework, but that will work only if it is underpinned by practical action for families on the ground in local communities. Therefore, we have the quality protects programme, which is a major programme to help children in general, but is also targeted on children with disabilities. I am pleased to be able to say that the grant directed at children with disabilities was £15 million last year, it is £15 million this year, and next year it will double to £30 million, so it is a significant investment for such children.

This is about trying to get greater integration of family support services—trying to integrate children with disabilities, including autism, into mainstream leisure and cultural activities. The hon. Gentleman mentioned children having life skills as well as education and having a chance to participate in the things that other children take for granted, which is extremely important. This is also about trying to ensure that people have key workers—one person to whom they can go, who can give them a gateway into the whole range of services that are available.

I have some practical examples of things that are happening under the quality protects programme, which are very encouraging. I will highlight a couple. In Cornwall, £1 million has been set aside to develop autism and Asperger's children's services. There is a five-bedded bungalow to provide respite care and transitional support and to ensure that parents can get a break from a tremendously stressful situation.

In Windsor and Maidenhead, a one-stop shop has been set up for children with disabilities, with a particular focus on children with autism. Again, it is trying to bring the agencies together so that parents are not pushed from pillar to post, trying to seek the most appropriate service. There are also early diagnosis, speech and language therapy, physiotherapy and occupational therapy, which are all designed to give children the extra step up that they need so that they can try to participate.

Slough has a new in-borough autism service, which is situated in the early years centre, so it is very connected with education, ensuring that children can be diagnosed and get access to services early, which is what parents want. So, the quality protects service is a practical programme that is actually making a difference.

The hon. Gentleman mentioned diagnosis and having multi-agency assessments. He is aware of the NIASA—national initiative on autism: screening and assessment—guidelines. I am pleased to be able to tell him that Dr. Gillian Baird, the secretary of NIASA, has been appointed as a member of the disabled children's external working group, which is working on the children's national service framework. Clearly, her views and the work that she is doing will be fed into that NSF, which is very practical. Rather than having guidelines in isolation, they will form part of an extensive programme under the NSF and there is a clear focus on that.

Secondly, the hon. Gentleman raised multi-agency assessments. He asked whether we would issue guidance to local authorities to say that all the agencies should come together to undertake the assessment. There must be nothing more frustrating for families than having to tell their story time and again to a multiplicity of individuals. I am delighted to be able to say that we have already issued statutory guidance under the quality protects programme. This is about moving from service-led assessments to looking at the child—putting the child at the centre of the assessment and asking what he or she needs, rather than what is the boundary of our agency, and what contribution we can make. That is quite a culture shift for some services—saying that this is the child's pathway or journey. It is similar to what we are trying to do in the national health service by asking what is the patient's journey. We are working out how to configure services to meet the needs of the child.

Mr. Bercow

The Minister is dealing very thoroughly with my questions. Does she agree that it is important that a child should have an alternative between, on the one hand, education in a mainstream school but in social isolation, which is what Christian currently endures, and inclusion in a special school in an atmosphere that may not be suitable? Surely there should be a spectrum of choice and opportunity, just as there is a spectrum of disorder.

Ms Blears

That is exactly the situation that we are trying to work towards. We want to provide services that are more flexible and responsive, which look and feel different and actually are different from those that we have been used to. We have embarked on that journey—we have to get from where we are now to where we want to be. Multi-agency assessments that ask what the child needs and trying to challenge services to configure themselves so that they meet the needs of that child will take some time, but that is very much the direction of travel. Those services will be valued and will make a difference to the long-term outcomes for children.

The third issue that the hon. Gentleman raised related to education and training, which are absolutely central. If we are to have early diagnosis and intervention, we must ensure that such issues do not go unnoticed for years and years. I am delighted to be able to tell him that in July the Department of Health and the Department for Education and Skills published some good practice guidance—exactly what he highlighted. It was produced by the autism working group, so we are very much in tune with our partners. The group was made up of experts and practitioners on the whole spectrum of autism disorders.

The document provides guidance on raising awareness and improving understanding of the disorders and draws on good practice throughout the country. It asks local education authorities and schools to keep their provision under review and to audit it, to provide monitoring and quality evaluation. If the provision available is not of the right quality, it will not have the impact wanted by parents and families. That guidance has been issued, so I am pleased to give the hon. Gentleman those reassurances.

In addition to the legislative framework that we have set up and the practical measures on the ground, a third important aspect is the children's national service framework. Whenever we talk about a specific service, it is crucial that we try to connect it to the rest of the machinery and the existing organisations; otherwise we end up with specific programmes for specific parts of the community. That is not the way to obtain sustainable mainstream provision that meets the needs of a whole range of people in our community. Sometimes, it is necessary for projects to pump-prime and kick-start things, to get innovation going and to set up pilots. However, the needs of children with autism are increasingly and equally important in the general thrust of the children's national service framework. They are very special children but they should be included in our mainstream thinking rather than being on the outside as "special" children.

Under the national service framework, there will be a series of exemplars for the design of optimum service. I am pleased to tell hon. Members that one of the exemplars will focus on children with autism, so there should be some good work arising from that to show what a good service for those children should look like.

The hon. Gentleman is right to say that in the past services for children with autism have been extremely poor and that families have often been left in isolation to cope on their own. We all acknowledge that.

Mr. Russell Brown (Dumfries)

I congratulate the hon. Member for Buckingham (Mr. Bercow) on securing the debate. I appreciate both that it concerns autistic children and that my hon. Friend the Minister is winding up her remarks. However, may I draw one point to her attention? It has been raised by some of the families with whom I have been in contact during the past couple of weeks. I realise that the hon. Member for Buckingham was talking about only one young man, but will my hon. Friend to consider the point that children grow up—even if she cannot address it this evening? There is a problem in my area, and possibly elsewhere: children have support and services but as they go through the transition to adulthood they fall between two stools and the support and service back-up which was available when they were children suddenly disappears. There is a large gulf as they move into adulthood and we need to address that.

Ms Blears

My hon. Friend is right. The transition to adolescence is difficult in the best of circumstances, but for children with autism the difficulties are multiplied. It is crucial that there are good, high quality support services for young people.

We do not always turn our minds to young people as a group. We do things for children and for adults, but young people are sometimes extremely vulnerable and I shall certainly take my hon. Friend's point on board.

We have taken a number of positive steps forward. There is a good legislative framework and some excellent practical projects are under way. We have put in more investment; as I pointed out, the grant next year is about to double to £30 million a year. Together with that investment, we need reform to find new ways of working, especially with our partners in the voluntary sector organisations, but I hope that in future the experience of the constituent of the hon. Member for Buckingham will not be replicated and that more flexible and responsive services will be in place to support families and children.

Question put and agreed to.

Adjourned accordingly at half-past Ten o'clock.