Cheryl Gillan calls for end to postcode lottery for autism services

Cheryl Gillan, who is Shadow Welsh Secretary and MP for Chesham and Amersham, introduced the second reading of the Autism Bill on Friday. Mrs Gillan had come top of the Private Members' ballot, and received over a hundred requests for causes to promote.

The Autism Bill aims to improve information on the number of people with autism (who number some 500,000), ensure effective transition to adult from child services, and access to support and services for people with autism. Local authorities would be held legally accountable if they fall short. The Bill has cross-party support, although ministers voted against the Second Reading.

It had been suggested that Mrs Gillan withdraw the Bill, as the Government were committed to taking action. But she commented:

"I am delighted by what the Government have put on the table—I make no bones about that. It is a tribute to the negotiating skills of the National Autistic Society. However, if the Government are to deliver their commitment, they have nothing to fear from examining the Bill clause by clause. The subject has been deserted for a long time and it is about time that the voices of those affected and their families were heard loud and clear. If the promises are as good as the paper on which they are written, there is nothing to fear from having a Committee stage, during which we can examine the Bill in detail.

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There is no malign intention in pressing the Bill. After it was suggested to me that the Government’s commitments were good enough for the Bill to be withdrawn, I looked up precedents. A Labour Member withdrew a Bill recently after it had gone into Committee and another Member withdrew a measure on a much smaller matter, so there is little precedent for such behaviour. I believe that I would let people down by not trying to get the detailed discussion that having the No. 1 private Member’s Bill affords."

Mrs Gillan later went into heartbreaking detail about the condition of autism:

"Autism is a lifelong and disabling condition that affects how a person communicates, and how they relate to and make sense of the world. It is a spectrum disorder that presents in different ways and to varying degrees in each individual. Some people with autism are able to live independent and fulfilling lives with very little support, while others need specialist support throughout their lives. Estimates suggest that one in 100 people has autism, which means that well over 500,000 in the UK have it. It also means that, together with their families, more than 2 million people are affected by autism every day. There are also suggestions that the prevalence of autism is on the increase.

Autism is a relatively recent diagnosis that was recognised only after world war two. Indeed, Asperger’s syndrome became part of international diagnostics manuals only in 1994. That may go some way towards explaining the low public understanding of autism, because although there is a high public recognition of autism and the fact that it is a disability, there is a host of myths and misconceptions about it. One of the most common is that autism affects only children, but one recent estimate put the number of adults with autism at well over 300,000. Often the interest in autism concerns its negative impact and burdens, but there are positive aspects, such as the outstanding talents, which have been considered far less often than the negative impacts. Professor Uta Frith tells me that about 10 per cent. of individuals exhibit special talents, mainly in art, music and memory. Many people also continue to believe, wrongly, that there is a cure for autism.

What is life like for children with autism? A recent report by the National Autistic Society found that 40 per cent. of children with autism had been bullied, while 27 per cent. had been excluded from school, 42 per cent. reported that they had no friends and 70 per cent. had an accompanying psychiatric condition. The NAS estimates that 63 per cent. of adults with autism do not receive enough support, while 82 per cent. of parents or carers of an autistic child say that their child needs some daily support to live independently.

Nine out of 10 parents are worried about their child’s future, at a stage when they are no longer able to support them. That leads to grief and pain for all involved. One parent said about her daughter:

“She has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we’re gone?”

Only 15 per cent. of adults with autism are in full-time work and 75 per cent. either do not have any friends or find it very hard to make friends. More than half of adults with autism have also been bullied or harassed as adults. The more I have learned about autism, the more I have come to realise that not enough is known about it. I have also seen that not enough is being done about the needs of these individuals.

Most local authorities currently do not fulfil their obligations to people with autism. They fail them. According to current Department of Health guidance, local authorities should already be working to assess the needs of adults with autism. However, that is frequently not the reality on the ground."

Tiverton & Honiton MP Angela Browning has a 37 year old son with Asperger's Syndrome, and is a long-time campaigner on these issues. She remarked on Friday:

"It is true that a lot has been done over the years, and I pay particular tribute to children’s services and the field of education. We are not there yet; I am not complacent in any way. However, I am often invited to schools for children with autism and sometimes to residential care institutions for such children. When I compare those children with their counterparts of 20 or 30 years ago, I see a generation who have an autistic spectrum diagnosis but who are more confident because of the more appropriate care and support that they get. Many of them will come to their teens and adulthood with a greater and more positive expectation of what life will be like for them than did previous generations.

That is why in the past few years I have tended to concentrate my own interests on adult services. My fear is that the current generation, having had their expectations built up, will be let down when they reach that all-important transition period, which has been mentioned and is an important part of the Bill. I am thinking, not least, of adulthood. I hear the good intentions, but I say to the Minister that the issues have to be enshrined in regulations and statutes that will work. That is important.

Yes, promises have been made in the past, and one of them was made to me. It was to do with my ten-minute Bill. The National Autistic Society wrote to me—I have the letter here somewhere—saying I would have to alter my speech of the following week because the Government had already announced they were going to do a prevalence study. I was delighted, and altered my speech accordingly. However, as the Minister knows because we have discussed the issue, here we are at the end of February 2009 and that prevalence study has not yet started."

Minister of State for Health Phil Hope responded for the Government:

"We can argue about which primary legislation the regulations sit under, but the fact is that we wish to introduce that statutory guidance, and I will address the detail of which Act we wish to use for that statutory guidance when I reach that point in my remarks. I should, perhaps, add that this is only in regard to adults. In addition to that statutory guidance, my hon. Friend the Under-Secretary of State for Children, Schools and Families intends that the Bill on apprenticeships, children, schools and learners will also be the Bill from which will flow statutory guidance on children with autism. In that case, there will be statutory guidance on children and young people’s plans—not the adult side, but the children side—that will flow from different legislation. That statutory guidance will spell out what is expected from local authorities in respect of children with autism when they draw up their children and young people’s plans.

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First, as I have said, new statutory guidance is promised for children and young people’s plans that will specifically refer to children on the autistic spectrum, and which will flow from the enactment of the Apprenticeships, Skills, Children and Learning Bill. We want to create robust systems to ensure that data collected on children with autism are then shared with adult social services to bridge that transition gap. There will be extra resources—an issue on which the hon. Member for Buckingham (John Bercow) pressed me. There will be £200,000 to research the challenges faced by young people with autism in their transition to adulthood, and yes, we will of course make sure that those resources are spent on that task.

John Bercow: I am grateful to the Minister for what he has said. My very simple question is: when?

Phil Hope: We will be spending that money this year. The hon. Gentleman can get further details on exactly when and how from my hon. Friend the Member for Portsmouth, North, who is responsible for that issue in the Department for Children, Schools and Families. That is an important area of expenditure for researching the challenges faced by young people with autism in their transition to adulthood.

There is extra funding next year for the Autism Education Trust—a total of £500,000 in 2009-10—to promote better commissioning skills among local authorities and primary care trusts, particularly in the field of education. There is also funding—£300,000—to research the prevalence of autism among adults. In answer to my hon. Friend the Member for Gateshead, East and Washington, West (Mrs. Hodgson) and others, we will be researching that prevalence because unless we have that information, how can we plan the way forward? In April, we will publish new commissioning guidance for PCTs and local authorities on the strategic planning of health and social care services to meet the needs of adults with autism. I make that point because of the importance that others have placed on the need to join up health and social care, making sure that the organisations are working together.

In April, we will launch the consultation on a new national strategy for adults with autism. There will be four pillars of reform in that strategy. They have been developed not by the Government but by an expert external reference group to which other Members have referred, led by Mark Lever, the chief executive of the National Autistic Society. The four pillars of reform for adults with autism are, first, better specialist and mainstream health services, and secondly, tackling social exclusion, including employment. I will say more about how we go about that; some excellent examples were given earlier of activities to help adults with autism get into voluntary and paid work. The third pillar is improved choice and control for adults with autism, not least through the much better personalising of services—we discussed individual budgets and the value that they bring—and the fourth is improving the skills and knowledge of the staff who work with adults with autism.

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We all know that legislation can be a very blunt and crude instrument for driving through change, especially when the end we seek is better awareness and better use of the expertise and resources that are already in the system. We need to preserve for councils the freedom and flexibility that they need to meet the complex web of local needs—not to avoid them, but to meet those needs in ways that are relevant to them in their area. We need an approach that ensures appropriate and relevant action on autism in every area and that complements the ambitious work that is already under way across mental health and social care."

The Bill will proceed and ConservativeHome will follow its progress. I must add a personal note, which is that I think Mrs Gillan's excellent efforts underline the foolhardiness of a localist approach to healthcare.

Tom Greeves