Autism Act 2009

Lord Collins of Highbury Excerpts

Monday 26th March 2012 Grand Committee

[Lord Collins of Highbury]

My Lords, I apologise for being slightly delayed in the voting Lobby earlier and for missing a few of the comments, but I picked up their general gist. I too am grateful to the noble Baroness, Lady Browning, for initiating this debate and, just as importantly, reminding us why the 2009 Act was developed. As she rightly pointed out, it recognised that adults with autism were a particularly socially isolated and excluded group, and it is important to keep reminding our society about that. The Act put two key duties on government: to produce, first, the strategy and, secondly, the statutory guidance which noble Lords have referred to. The Government are now committed to reviewing implementation of the strategy in 2013, and it is vital that this review is as comprehensive as possible. Like many noble Lords, I am also grateful to the National Autistic Society for assisting me with the provision of background information, and for the excellent work that it is doing. I pay it a special tribute.

That society has, of course, not been standing still. It has been looking at monitoring progress towards the full implementation of the strategy. It has particularly been monitoring local authorities about the specific tasks within that strategy: the autism lead; working pathways for diagnosis; established partnership boards, which noble Lords have referred to; including the needs of adults with autism in the joint strategic needs assessment; and developing a local commissioning plan. There is also awareness training, which is vital in all service providers because as the noble Baroness, Lady Browning, pointed out there are still things going on which should not be and which are illegal. We also need to broaden that and have, as she said, awareness training in place for community care assessors.

The results of the national society’s own research are patchy, but it appears that many authorities are starting with the easy bits, as your Lordships would expect. A very high rate—74 per cent—have established an autism lead and 55 per cent have established an autism board. Yet when it comes to more complicated steps, such as producing a commissioning plan, collecting information about adults with autism and having basic training, only about one in three authorities has either taken action or is actively pursuing these goals. The society has advised me that it regularly hears from front-line professionals who say that a key challenge in implementing the strategy is gathering accurate data on the needs of their local population of adults with autism. The strategy sets out that the Department of Health would develop a protocol for information-sharing at local level to help improve local data. This is yet to be published. One of my first questions for the Minister is, therefore: what progress is being made in developing this protocol?

I also understand from the society that the health department is currently undertaking a zero-based review of its data returns. Again, front-line professionals have told the society that adding autism into these returns is essential to help them gather the information they need to plan for cost-effective services. The society is aware that the department has been discussing adding information on autism. What progress is being made to ensuring that data on autism will be collected as a result of the zero-based review?

One important area that the noble Baroness, Lady Browning, and my noble friend both referred to is of ensuring access to diagnosis, which is the cornerstone of the autism strategy. This is also an issue which, to date, very few areas have been able to address successfully. This is one of the areas which I want to focus on. As we have heard, NICE is currently drafting a guideline on the most effective way to develop a local diagnosis pathway, as well as the most effective interventions for adults with autism, which would of course help. However, professionals are telling society—I also read about this at the weekend in an excellent article on autism in the Observer—that a key barrier for developing local pathways to diagnosis is trying to engage the local NHS in local implementation plans. In this respect, the blame is being partly laid on the NHS reorganisation.

I would like to repeat the question posed by the noble Baroness, Lady Browning, to the Minister: as NHS reforms are taken forward, will guidance be developed for health and well-being boards and clinical commissioning groups about the Autism Act? As the noble Baroness has already pointed out, there are already failures in understanding the true nature and requirements of that Act, and we need to ensure that it is understood at all levels as a consequence of the reorganisation.

As we have heard, many aspects of the strategy’s objectives also realise the full potential of people—both children and adults—who are autistic. As many, including the National Audit Office, have identified, the implementation of this strategy will save money: it will save the public purse. I would like to once again stress the question posed by the noble Lord, Lord Touhig, to the Minister: what progress is being made by the Department of Health in developing guidance with professionals on the business case for local teams? What action is the Department of Health taking to encourage the development of these teams locally? Will the barriers to developing these teams be considered as part of the 2013 review of the strategy?