Autism Act 2009

Lord Touhig Excerpts

Monday 26th March 2012 Grand Committee

[Lord Touhig]

My Lords, I thank the noble Baroness, Lady Browning—indeed, I am proud to call her my noble friend—for securing this debate today. Those concerned about autism and how we support people with autism and their families have no better champion in this House than the noble Baroness.

All too often in my experience, the public perception of the need to make provision to support people with autism is that it is a matter for the education services alone; it is about helping autistic children. But, of course, while providing educational opportunities for autistic children is vital, necessary and right and proper, I fear that it sometimes masks our appreciation that autistic children grow up into autistic adults, and the support is needed for adult life as well. All too often, I fear that our approach focuses on early years alone, and that is often seen as our priority. It is right that it should be a priority, but it should not be the priority to the exclusion of all else.

When I spent a day at the National Autistic Society’s day centre in Croydon a couple of months ago, I saw for myself how the team there is making a real difference to the quality of life of autistic adults but, like many others, I am concerned about the step before: the support given during the transition from childhood to adulthood. It is often taken for granted that people should be able to move in and out of education throughout their lives. We have to ensure that people with autism have the opportunity to be able to continue to access education throughout their lives and that it is a given right, not a gift which society may or may not bestow from time to time.

The need to improve the transition to adulthood for people with autism is mentioned in the autism strategy, but as far as I can see it contains no concrete proposals to deliver these improvements. I know that Ambitious about Autism has asked the Government to recognise that a good transition to adulthood delivers long-term cost savings to the state, as well as increased life chances for people with autism and their families. Good links between health, social care and education services are essential to a good transition. The current lack of reference to education in the autism strategy is, I think, worrying us all. I would like to see the review of the strategy next year lead to the inclusion of education services.

In its Finished at School research paper, Ambitious about Autism found that just one in four young people with autism goes on to any form of education or training beyond school. It also found that where young people with autism are supported to continue their education, they are more likely to live independently and access employment in later life. This reduces pressure on adult health and social care services. Until local commissioners and those driving the strategy nationally invest in making further education and training accessible to young people with autism, I fear we will continue to see them go down the default path into adult health and social care services. Will the Government consider what concrete measures to improve the transition will be included in the review next year?

In previous debates, I have spoken of the worries that the National Autistic Society has had about the proper guidance, better training and more robust data which services for adults with autism need if those services are not to fail them. A key National Autistic Society concern, which I and others share, is that specialist autism teams such as the Liverpool Asperger Team and the Bristol Autism Spectrum Service will, despite being recommended by NICE, not be commissioned in each area.

The Minister might recall that in a debate on 31 March last year I raised the issue of the National Audit Office investigation into public spending on autism. It found that if such teams are established there is a potential to save money. It estimated that if local services identified and supported just 4 per cent of adults with high-functioning autism and Asperger’s syndrome, the outlay would become cost neutral over time. In addition, it found that if it did the same for just 8 per cent it could save the Government £67 million a year. The Liverpool Asperger Team, which is the longest-standing specialist Asperger’s service in the country, currently reports identification rates of 14 per cent. Four per cent therefore seems a very achievable figure for newly established autism teams, and a cost-neutral level of service is an entirely realistic prospect. How will the NHS Commissioning Board ensure that clinical commissioning groups are given guidance on commissioning services, particularly specialist autism teams, for adults with autism? What steps are being taken to improve data protection and training for professionals in the NHS, and is autism being included in these discussions?

I have a couple more questions. The draft NICE guideline states,

“that the Care Quality Commission will monitor the extent to which Primary Care Trusts … responsible for mental health and social care and Health Authorities have implemented”,

these NICE guidelines. Given this role, will the CQC therefore be involved in the 2013 review? Recently, it was confirmed by the Department of Health that NICE will produce two quality standards for autism, one for children and one for adults. Is there a timeframe for when we can expect these standards to be published? Finally, how can stakeholders be involved in the development of these standards?

This debate has given us an opportunity to put these questions and I fully appreciate that the Minister might wish to reflect a bit further and write. As the noble Baroness, Lady Browning, made clear, this requires ongoing monitoring. If the Act is to be effective, we have to continue to monitor and ask these sorts of questions. I have no doubt that the Minister in his usual good way will make sure that we have an adequate and full response.