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Mr. Brooks Newmark (Braintree) (Con):
Before I ask a question on this very subject from a constituent I met a couple of weeks ago, I would like to congratulate my hon. Friend the Member for Chesham and Amersham
(Mrs. Gillan) on introducing the Bill. On behalf of the relevant families in Braintree, I also congratulate the Government on supporting such an important Bill.
Two weeks ago, I met a constituent with a young son, probably quite low on the autistic spectrum, who had found it difficult to get a job. I have heard what the Minister has said about training to support people with autism in getting a job, but with only 15 per cent. of young adults as a whole gaining access to full employment, I am still not—
Mr. Deputy Speaker (Sir Michael Lord): Order. I am reluctant to interrupt the hon. Gentleman, particularly given the subject we are debating this Friday, but I would be grateful if he would now put his question.
Mr. Newmark: I would like to finish my sentence, Mr. Deputy Speaker. My question on behalf of my constituent is: what advice will be available to people working in Jobcentre Plus, for example, to help young people like my constituent’s son gain access to a job? I am still not clear about that, and we all agree that all our constituents deserve access to full employment.
Ann Keen: As I continue my speech, I will address that point. I recognise that the difficulty raised by the hon. Gentleman is, sadly, a common one, but the Bill and the strategy are intended to help deal with it.
As I was saying, within the choice and control theme of the consultation, we are seeking views on how better to support people with autism. Our vision is that adults with autism should be given the support they need to be empowered to take control of their lives—a good sentence and good words, but how? They must be able to participate as fully as they are able to in society and to pursue the lifestyles and relationships of their choosing.
Our vision is that those with support needs will have a person-centred plan, which should be regularly reviewed to enable the individual to meet their personal goals and objectives. Having choice and control also means ensuring that personal budgets are accessible to adults with autism; ensuring access to a proper and ongoing transition plan for all young people; and providing the right support so that adults with autism can communicate effectively.
Much has been said, and rightly so, of training and awareness. You will have noticed, Mr. Deputy Speaker, that a common theme and challenge faced by adults with autism is that those who are supposed to provide them with support and services do not always have the necessary understanding and awareness to provide the right type of support. Thus awareness raising and training is the final key theme in the consultation.
A lack of awareness and understanding can affect people with autism in many ways. It can affect their quality of life, including their ability to access leisure, community and education services, as well as access to public transport and the ability to feel safe in their own community. It can affect their ability to make a positive contribution to society when people fail to see past the label of autism; their ability to exercise choice and control and maximise their independence; their right to freedom from discrimination or harassment, including equality of access to services and not being subject to abuse; and their ability to secure their economic well-being through employment and a range of training opportunities.
Stakeholders have raised with us a key concern about the extent to which many professionals and the wider population understand the characteristics of autistic spectrum conditions and how that can affect behaviour. A lack of understanding can lead to unacceptable intolerance and discrimination—and, sadly, isolation for many people. A survey by the National Autistic Society showed that 83 per cent. of individuals with Asperger’s syndrome felt that many of the problems they faced were a direct result of others not understanding them. As we have seen from earlier examples of good practice by the Liverpool Asperger team, a great deal can be achieved from learning from others.
The hon. Member for Guildford will be pleased to learn that I am about to mention Surrey. The county autism group and local autism lead have developed a network of 80 champions across services in all sectors in the county. Those champions have six months’ training and mentoring, and help to cascade that training to their teams. Champions are supported to network and share good practice across services, leading to a positive outcome for individuals with autism.
Training and awareness is a key issue for a number of different professionals. For example, autism is mentioned in the GP curriculum statements on mental health and children and young people. I would expect all GPs to have a general understanding of first principles. However, the Royal College of General Practitioners recognises that there is a wide variation in services for children and adults with autism across the UK.
Angela Browning: We have made the point about GPs before. It is not that we expect them to diagnose someone; it is that they are the gatekeepers and should be able to make an appropriate referral, and when they make a referral, someone with the expertise needs to be available at reasonable notice—it should not an appointment in a year’s time—to make that diagnosis. I stress that point. It is not possible to read up on the condition in a book and become capable of diagnosing it.
Ann Keen: Sadly, that may be the hon. Lady’s personal experience of cases in her constituency. I, too, recognise the situation and, to be fair to the Royal College of General Practitioners, it also recognises it. For example, it would say that there is a lack of consistency of awareness of the availability not of a formal diagnostic assessment, but of a gateway, as was mentioned.
The royal college’s learning disabilities group is particularly concerned about the lack of services for people with autism, especially those with high-functioning autism or Asperger’s syndrome. There is a danger that those people can fall in a gap between the specialist services of mental health and learning disabilities and really struggle to find specialist support. We will be looking out for that as we analyse the results of our consultation, due to end in September. I will be happy to share those results with hon. Members.
We are committed to working with professional bodies to take action on training issues to address the needs of people with autism. That will form part of our work to develop the strategy on adults with autism. Although good practice may not be consistent, there are pockets around the country where GPs are responding well, as in the example that I quoted of the mother with two sons.
It is also worth mentioning the Bradley review in that context. That independent review was commissioned to examine the extent to which offenders with mental health problems or learning disabilities could, in appropriate cases, be diverted from prison to other services, and the extent of the barriers to such diversions. The review has kept a broad remit and incorporated the range of mental health problems and learning disabilities across the criminal justice system. It made recommendations to the Government, including the organisation of effective liaison and diversion arrangements, and the services needed to support them. We will be convening a special event that focuses on the criminal justice system and autism as part of the programme of stakeholder engagement to support the consultation on the strategy.
I believe that the autism strategy will improve the lives of people living with autism and their families through the key priorities of health, social inclusion, including employment and housing, choice and control, and training and awareness-raising. The strategy will be supported by detailed guidance to NHS bodies, NHS foundation trusts and local authorities.
Although the autism strategy is a hugely important development, we have already moved forward significantly on our commitment to delivering improvements. On 2 April, world autism day, the Government published guidance for commissioners aimed at the NHS and local authorities.
That sets out good practice for strategic planning of health and care services to meet the needs of adults with autism. I must also highlight that the devolved Administrations are developing, or have already published, guidance, strategies and action plans to support people with autism.
Members have highlighted the lack of robust information on the number of people with autism in this country. That was a theme in the recent NAO report, “Supporting people with autism through adulthood”, and at a hearing of the Public Accounts Committee earlier this week, but that problem is not confined to this country. It appears that many other countries worldwide share the problem. We are therefore commissioning a study on the prevalence of autism in adults and a public health observatory to improve further the data and knowledge in that area and to get a clearer picture of the number of adults with autism in England. We believe that that will be an important step in understanding our own population, and potentially make an important contribution to autism research internationally.
Mrs. Gillan: I am amazed at the response I am getting from the Minister—I am sure everybody is. She has been talking since half-past 11; her speech is a tour de force, and I am most grateful for the detailed way in which she is responding. In fact, I thought I would give her a bit of a rest by making an intervention, because I think she probably needs a glass of water. The prevalence study has been a huge bone of contention. When my hon. Friend the Member for Tiverton and Honiton (Angela Browning) introduced her ten-minute Bill, the Government promised that there would be a prevalence study. The non-delivery of that has caused an awful lot of the problems. The Minister says once again that the prevalence study is coming. We know that Christmas is coming, too, but does she have a firm date as to when the prevalence study will take place?
Ann Keen: I hope to receive guidance from my officials on that before I finish my speech, because I would like to be able to give the hon. Lady a satisfactory answer, given her gracious comments in her intervention. I certainly take her point on board, and I offer an acknowledgement to the hon. Member for Tiverton and Honiton, too, on that matter.
Let me now say a little more about the issue of information, as it is crucial to the identification of need and the planning and commissioning of services. We will address issues relating to the collection of data on adults with autism by engaging with local communities, voluntary sector experts and carers to work out how to overcome existing problems in collecting information locally. We will develop proposals through the strategy to enable every locality to collect good data about the needs of people with autism living in the area. The joint strategic needs assessments are a key mechanism for commissioners to understand the needs of local people. The work we are taking forward this year, including publishing guidance and sharing good practice on strategic needs assessments, will help to improve the information local services can access to inform commissioning decisions.
My hon. Friend the Member for Portsmouth, North (Sarah McCarthy-Fry) was present at the start of the debate. She was working on children with autism and the transition to adult services before she took up her new ministerial post at the Treasury. Supporting children and young people with autism is an important part of the work this Government are engaged in through the “Aiming High for Disabled Children” programme. Transition—supporting young people as they move into adulthood—is perhaps the area of greatest interest and concern. The report, “Aiming High for Disabled Children: Better support for families”, recognised that transition provision for young people was inconsistent. That is why we established the £19 million transition support programme with the aim of addressing that inconsistency and ensuring that by 2011 every area is at least meeting minimum standards. Arrangements are in place to achieve that. The Council for Disabled Children sent all local areas a self-evaluation questionnaire in 2008. There was a 99 per cent. response rate, enabling the CDC to provide authoritative advice to Government on the support needs of local areas.
The Department of Health and the Department for Children, Schools and Families, working with the CDC and regional support agencies, agreed three offers of support to local areas: offer one related to recognising those working beyond minimum standards; offer two was in respect of those just meeting minimum standards; and offer three related to those not meeting minimum standards.
There are stretching key performance indicators to ensure progress towards the 2011 target. The aim is to improve local services better to meet the needs of their disabled young people. Support to local areas is available from regional support agencies and centrally from the CDC, working as the national transition support team. The overall objective is to improve support and choices as young people plan and prepare for what they will do as adults.
By improving local services, we can ensure that the right structures are in place to support young people. The guidance issued since “Aiming High” advocates a strategic transition protocol; multi-agency sign-up; and
responsibility for delivery for senior managers across children, adult, health and social care services and for lead members. That approach includes Connexions; information, advice and guidance services; youth services; leisure services; housing; support employment; and local colleges. That is because of the need to reflect the broad base that transition covers.
It is important not to focus on collecting data on the number of transition plans completed—that is a statutory requirement for all with a statement of SEN. Rather, it is better to focus on improvement in service delivery and clearer engagement with all disabled young people in order to allow them to contribute what they want to do as adults. Such an approach will maximise their economic situation, their health and their well-being.
Direct grants are available for local areas that are performing well during the transition period. Regional adviser support will be focused on those with furthest to travel to reach adequate standards of transition support, and regional advisers will provide networking support for all local areas, with a particular focus on the local areas that are not receiving support in the two categories above.
The all-party group on autism’s latest report, published last week, fits well with the existing research on young people with autism and also with the larger body of research on disabled young people and transition. It highlights some key features of what should be available in good transition support, and I can confirm that those are all issues that the Department of Health’s forthcoming research study on autism and transition will explore. In the research study we plan to draw on information from our current transition study “Models of multi-agency services for transition to adult services for disabled young people and those with complex health needs: impact and costs”. That study is led by the multidisciplinary children and families team at the university of York and aims to support the delivery of the national service framework for children, young people and maternity services.
A key question is what support those services provide for all young people with autism and not just those with learning disabilities, and what the young people’s and their parents’ experiences can tell us about what is working well and what is not. I expect that the Department of Health study will begin this year—on 1 November—and end in 2012, and there will be interim reports of findings during that time. Owing to procurement rules relating to confidentiality, I am sorry that I am unable to give further details now, but as soon as it is possible to do so, we will provide further information.
The all-party group report also raises the issue of autism and higher education. The current Department of Health transition study that is looking at disabled young people of transition age considers young people with degenerative conditions. From the experience of that study, we are aware that a lack of support from any services for young people going on to higher education is a problem.
Mr. Michael Mates (East Hampshire) (Con):
May I congratulate the hon. Lady unreservedly on the way in which she has been dealing with her speech on this Bill for one hour now, largely uninterrupted, on a subject that she has admitted is not hers? May I remind her, too, that another of her colleagues is equally eager to
show that he cares about a small minority whose needs are just as great as those of the minority we have been talking about? I am a little alarmed by the large number of sheets of paper still in her hand. Am I the only one in the House who thinks that she may be being instructed to make a speech of inordinate length, even though this has all been agreed three hours ago?
Ann Keen: Those are most ungracious remarks. Hon. Members have asked me some very serious questions, and I have endeavoured to answer them in full, as this subject deserves. The hon. Members for Chesham and Amersham and for Tiverton and Honiton have had very little time to discuss this important issue in the House, and if the right hon. Gentleman is disturbed by that, I suggest that he takes another look at the values and priorities that we profess to have in this place. I make no apology for continuing.
From the study, we are aware that a lack of support from any services for young people going on to higher education is a problem. That may be linked to a lack of expectation that that is attainable, so it will be important to look at that in our research. I also draw the House’s attention to the fact that transition arrangements are specifically mentioned in clause 2 as one of the topics that must be included in the guidance that we will be issuing to support implementation of the autism strategy. There can be no clearer demonstration of the importance which we attach to this issue.
I will now take a few moments to address specific points that the hon. Member for Chesham and Amersham made in her speech. In so doing, I am conscious that I may be guilty of repeating myself a little, but I want to ensure that I do her the courtesy of specifically addressing her concerns.
First, the hon. Lady asked for reassurance that proactive measures to identify people with Asperger’s syndrome and high-functioning autism will be put into place and that these measures will not be reliant purely on making better use of existing data. I should like to assure her that we will indeed take such proactive measures and will explore during our consultation period the best way to do that. In addition, we are already undertaking work to support local services to improve identification of people who need more support. We are commissioning a new public health observatory for learning disabilities, which will also be tasked with addressing data for all people with autism.
Secondly, the hon. Lady asked me to confirm that the emphasis will be on identifying people who are not already known to services and people with Asperger’s syndrome. I am very happy to give her that confirmation. We want to get good data on the whole population of people with autistic spectrum conditions. I am also very happy to confirm that the definition of people on the autism spectrum does indeed specifically include those who do not have a learning disability and who are often categorised as “high functioning”, and people with Asperger’s syndrome.
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