Autism Act 2009

Baroness Browning Excerpts

Monday 26th March 2012 Grand Committee

Asked By

[Baroness Browning]

To ask Her Majesty’s Government what assessment they have made of the implementation of the Autism Act 2009 and associated autism strategy.

[Baroness Browning]

My Lords, I am very grateful to all noble Lords showing an interest in this debate this afternoon, and particularly to the Minister, who I know takes the Autism Act 2009 very seriously. I have brought it forward at this time because the Act needs to be kept under review. There are certain aspects that I want to air today particularly as far as the implementation of the strategy is concerned. I hope that the Minister will be able to take away some of the concerns that I have about it.

It is important to re-emphasise that this Act, introduced by my dear friend the right honourable Cheryl Gillan MP in another place, is the first, and I believe only, condition-specific legislation on our statute book. As a result, we have a particular regard for the reason why it came about. It was because, as a spectrum, autism is a complex condition, which has only begun to be understood in recent years, and because even those who present as more able on that spectrum can deteriorate in areas of mental health, particularly when they progress from childhood to adolescence and then on to adulthood, if they do not receive the appropriate packages of support, much of which will need to be lifelong for many, even the most able. It was for that reason that Parliament singled out the condition of autism in order to put this legislation on the statute book. The Department of Health has responsibility not just for implementing it but for overseeing it, so that this legislation carries out Parliament’s wishes in the responsibilities of the Secretary of State to,

“prepare and publish … a strategy for meeting the needs of adults in England with autistic spectrum conditions”,

and to issue guidance to local authorities and health bodies to secure the implementation of that strategy. There is also a duty on local authorities and health bodies to act under that statutory guidance.

I would like to begin by raising issues that are in the current strategy, on which I hope my noble friend will be able to answer my questions or, if not, to write to me afterwards. The first is to do with partnership boards. Page 29 of the guidance raises the matter of partnership boards, but in the guidance these are not to be required in every circumstance; there is simply a requirement for partnership boards to be there and to be a body where people with autism and their families could participate. It is not statutory that they should. Will partnership boards be monitored in terms of their being set up, and what is the Government’s position now on partnership boards including those with autism and their families? We know that this is one of those conditions where carers and those who can self-advocate in particular are in a key position to add to what is needed in their own services.

I would also like to raise with my noble friend the question of IQ, on which I have put down Written Questions. Page 15 of the guidance states:

“Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ”.

This is a very old problem which particularly affects those who present with Asperger’s or the more high-functioning Kanner’s autism. I apologise; I should have declared my interest as vice-president of the National Autistic Society. Having been in another place for 18 years, I have dealt with a lot of casework—not just my own but also that of other Members of Parliament. IQ has been the reason social services and other statutory bodies have denied people on the spectrum the right to an assessment and thus to appropriate services; I must tell my noble friend that I still receive casework of this nature today. The practice is clearly now illegal. In fact, I believe it was illegal under existing legislation affecting social services and their requirement to assess people. I ask my noble friend to take an interest in this, particularly for people who have previously been assessed but did not necessarily have IQs under 70 which would have determined them as learning disabled. It is still a problem in some areas. This legislation should have put a halt to that: my interpretation of the strategy is that it is quite clearly illegal.

I also raise with my noble friend the matter of diagnostic leads in NHS bodies, featured in the guidance. Page 15 states that there will be a clear pathway to diagnosis in every area by 2013. Page 16 goes on to say that:

“Each area should put in place a clear pathway for diagnosis of autism, from initial referral through to assessment of needs”.

Page 15 also states that,

“the end goal is that all NHS practitioners will be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary”.

I know that we are waiting for NICE guidelines to be published on this. I do not know whether the Minister can give us some indication of the timeline as far as the NICE guidelines are concerned. However, in view of the omission in the guidance of foundation trusts and the implication of the Health and Social Care Bill regarding the bodies which will replace PCTs, I wonder whether my noble friend could tell me how the requirements of the autism strategy are going to be met. Are we in danger—and I hope I am wrong in my interpretation of this—of having postcode lotteries in terms of the requirement of the strategy? For changes in health service organisation, those requirements under pages 15 and 16 may well not be achieved as far as the health bodies are concerned. How are these diagnostic leads and their work to be benchmarked? In other words, how are we to assess how capable they are of doing that work? How are we to assess the geographic spread, bearing in mind that there are many cases of autism among adults that are quite complex?

I am not saying that it is easy to diagnose. Diagnostics across the autistic spectrum, including for children, require people with experience of working regularly with those people. However, by the time people enter adulthood—and sometimes people present quite late in life—there can be really complex needs. A mental health condition commonly overlies an autism diagnosis. I point out to my noble friend for the record—I know that he will know this—that autism is not of itself a mental health condition. However, we know—this applies as much to the more able end of the spectrum as to those with more complex Kanner’s autism—that many learning to get by in life as adults often present very strange behavioural patterns. These are not necessarily psychotic but all too often people who are inexperienced in diagnosing find it difficult to disaggregate rather strange autistic behaviour—I choose my words carefully—from what might sometimes be misinterpreted as a psychotic basis of need following a clinical psychiatric diagnosis. Sometimes, of course, both conditions apply and sometimes it gets more complicated than that. What I am really saying to my noble friend is that I am concerned about these diagnostic pathways, who will be doing them, how we will benchmark their qualifications and the quality of the pathways, and how they will be provided given that foundation trusts are not listed in the strategy and that changes are to be made to the structure of the health service through the Health and Social Care Bill.

The other matter I want to raise concerns the professional training of local authority staff. The end goal is to have staff with clear expertise in autism within each area. I am very nervous of tick boxes. I do not want to see a situation where people who have been on training courses tick boxes but we are unable to define what expertise they have or their interface with the autistic community. Therefore, I hope that my noble friend will find a way of evaluating this training to ensure that it is not just a tick-box exercise.

I am looking at the Whip, as I am sure that she will call me to order fairly soon. However, I want to raise a final matter.

I asked my noble friend Lord Freud whether his department had conducted consultation on the Autism Act before introducing the Welfare Reform Act. The Autism Act is a unique piece of legislation. The Department of Health should check whether new legislation that is brought forward by other government departments affects the provisions of the Autism Act. I am concerned about changes being introduced in housing legislation that affect the under-35s and how the strategy for moving towards independent living will work. I do not know whether my noble friend can tell me what discussions his department has had with the DWP but I am seriously concerned that judicial review will be instigated following what I regard as severe defects in other legislation that clearly has not taken the Autism Act into account. I hope that, as the Minister in charge, my noble friend will make it his responsibility to ensure that this does not happen on an ongoing basis.