Autism Bill

My Lords, I welcome the opening remarks by my noble friend. I am extremely pleased that she is taking the Bill through the House, and I am delighted to be speaking to it today. I add my voice to those welcoming the noble Lord, Lord Freud, in his place in the House. His fame—possibly notoriety—goes before him, and his maiden speech did not disappoint. I am sure that we will find him moving forward with great rapidity on his own Benches, and we can all look forward to that. I think the fact that many noble Lords stayed in their places to support my noble friend’s opening remarks tells us how important the issue of autism is in your Lordships’ House, and I am pleased to say that the Government have clear their commitment to taking action to improve services for people with autism. Our means for achieving that is through the development and publication of the Adult Autism strategy, and most of my remarks will be addressed to adult autism. I shall make a few remarks about children and transition, as the noble Baroness, Lady Tonge, mentioned, but this is a most important discussion about adult autism. I pay tribute to Cheryl Gillan for bringing this forward in another place. The full public consultation on the content of the strategy began on 29 April. I am pleased to say from the outset that the fact that the Bill will not reach the statute book until after the break, due to the procedures of the House, does not mean that work on the strategy and the work contained within the Bill will not begin. We are determined to do what we can, within the confines of what we can do, before the Bill reaches the statute book. When the Bill was introduced in another place, the Minister for Care Services made it clear that, while the Government share the principles which underlined the Bill, we could not support it in the form in which it stood. That is why the Government brought forward the amendments that have made the Bill as it stands today. Through the Bill, the Government are making clear that we will deliver what we have promised. The duty on the Secretary of State to prepare and publish a document setting out a strategy for meeting the needs of adults with autism in England by April 2010 is unavoidable. It is a mark of our commitment that we not only accept that duty but, indeed, that we proposed it. We cannot pre-empt the consultation on the strategy, which will end in September, but with our external reference group we have identified the priority themes for an adult autism strategy. These are health, social inclusion, employment, choice and control, and training. On health, we will identify the barriers to accessing specialist health interventions and mainstream healthcare services and propose action in the strategy to address this. On social inclusion, the strategy will address issues of employment for people with autism, as mentioned by the noble Lord, Lord Freud. That includes building on work to address the commitments in Public Service Agreement 16 to support more of the most socially excluded groups of people into employment. We are commissioning work from the Social Care Institute for Excellence to publish evidence-based good practice guidance in September 2010 on enabling people with autism to have greater choice and control over the types of support they receive, and we will be working with professional bodies to take action on addressing the training issues. Skills for Care is carrying out a national consultation to create new knowledge sets, with the aim of publishing the basic competencies needed for workers who support people with autism. We have already made clear our intention to publish the final strategy by the end of 2009. We are happy to underline our commitment by setting ourselves a statutory timescale for this, with, of course, a sensible margin for flexibility. In developing the strategy we are working closely with a very wide range of stakeholders—a term I hate, but I could not think of another one that encompassed the range of bodies with which we are working in terms of the voluntary sector and right across the spectrum. We want to hear from as many people as possible whose lives have been touched by autism, whether personally or professionally. We have an external reference group comprising people with autism, family, carers and health and social care professionals involved in the front-line delivery of services. We will work closely with the group over the next few months as we develop firm proposals for the final strategy, and we are running a series of consultation events and opportunities so that we can involve many more people, especially those whose voices are less often heard. The publication of the strategy will be only the first step. We will not simply put it into the public domain and then leave local authorities and the NHS to get on with it. I am pleased to tell the noble Baroness, Lady Verma, that the strategy will be supported by a delivery plan. We will establish clear leadership for delivery of the strategy at national, regional and local level, learning from the model set out in the Valuing People Now strategy for people with learning disabilities, which has proved to be successful in delivering and implementing that strategy. To give teeth to delivery, we will consult on and produce detailed guidance to set out what the NHS and local authorities need to do to achieve the changes that we expect to see described in the strategy. This guidance will be put on a statutory footing for both local authorities and NHS bodies. Again, we are happy to be tied to a clear date by which that guidance will be published. Some might feel that nine months between the final publication deadlines for the strategy and the supporting guidance is rather a long time, but until we have completed the consultation on the strategy and are more certain about what the priorities for action are going to be, we cannot start working up meaningful guidance in detail. As we are going to place an obligation on the NHS and local authorities to act in accordance with the guidance, we must allow time to consult them so that we do not set requirements that it is impossible for them to meet in practice. We may well be able to issue the guidance considerably earlier than the end of 2010, but we have taken the prudent step of ensuring that we have sufficient time to do the job properly. With the Bill we have made a firm commitment on the key issues that the guidance will need to cover: the provision of diagnostic services, information-gathering, needs assessment, the strategic planning of services, transition planning, workforce training and local leadership. We have already moved forward significantly on our commitment to deliver improvements for adults with autism. On 2 April the Government published guidance for commissioners aimed at the NHS and local authorities. This sets out good practice for the strategic planning of health and care services to meet the needs of adults with autism. We are commissioning a study on the prevalence of autism in adults—I will come back to that issue in a moment—and a Public Health Observatory to further improve the data and knowledge in this area. We acknowledge that data are a major issue. 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 problems with collecting information locally. Joint strategic needs assessments are a key mechanism for commissioners to understand the needs of local people. Information included in JSNAs about people with autism is critical to ensuring that better services are planned and commissioned locally. The work we are taking forward, including publishing guidance and sharing good practice, will help to improve the information that local services can access to inform commissioning decisions. My noble friend has explained the Government’s proposals for children. I add that supporting children and young people with autism is an important part of the work we are engaged in through the Aiming High for Disabled Children programme. Supporting young people as they move into adulthood is perhaps the area of greatest interest and concern. That is why we established the £19 million Transition Support programme and why we have listed transition as one of the issues that guidance to support the autism strategy must cover. The All-Party Parliamentary Group on Autism’s latest report, published last week, fits well with the existing research on young people with autism and 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 these are the issues that our forthcoming research study on autism and transitions will explore. I expect that the study will begin in November this year and end in January 2012. I am sorry that, due to procurement rules around confidentiality, I am unable to give further details now; as soon as it is possible to give further information, I will certainly do so. I shall respond to some of the points made by noble Lords, particularly the noble Baronesses, Lady Tonge and Lady Verma. I thank the noble Baroness, Lady Tonge, for her remarks and compliments. I always do my best to respond to the issues raised in your Lordships’ House, and I will continue to do so. Both noble Baronesses asked why so few JSNAs cover autism. We accept that this is a problem, which is why we are publishing the good practice guidance. It will set out what a good JSNA looks like so that people do not fall through the net. We have not to date collected the data on the numbers of leads and named leads for autism, but I think I shall take that point back to the department and ask why that is not possible, as it seems to be a suggestion that we should pursue. Both noble Baronesses asked about jobcentres and trained staff. The DWP is committed to ensuring proper training, but I will again pass that question to my noble friend there to see if I can put on the record specific details about how that is achieved, and I will write to noble Lords with the answers. The noble Baroness, Lady Tonge, asked about the delays in announcing the prevalence research. In May 2008, we announced prevalence study as a key element in developing our autism strategy but, having initially pursued a single tender for this research, our procurement rules meant that that option could not be pursued. So that has led to a delay, for which I apologise. However, we remain committed to ensuring that the study starts this year and once it reports, we will have a better picture of the numbers of adults with autism. This research will aim to inform strategic planning at central and local level. The noble Baroness asked what we are doing to ensure that health and social services share resources to support people with autism. Many people with autism who use learning disability services already benefit from pooled budget arrangements. Some 83 per cent of local authorities have a formal arrangement for a pooled budget with the NHS for services for learning-disabled people aged 18 to 64. I do not pretend that these always work perfectly, but the existing legislation makes provision for local authorities and the NHS to make use of pooled budgets, and we certainly encourage them to do so. As usual, the noble Baroness, Lady Verma, set me many exam questions. I will endeavour to answer some, but if I cannot answer them all, I will write with the answers. The noble Baroness asked whether statutory guidance will specify that JSNAs must cover autism and that assessments should be done only by properly trained staff. We cannot pre-empt the consultation on guidance but we would expect it to address this area. I think that I have already addressed the noble Baroness’s question about how we expect JSNAs to function. I also think that I have addressed the issue of the National Autistic Society’s briefing, how we are working with it, and the fact that it is an integral part of the consultation process. I can confirm that we are very keen to get the views of people who are less often heard. We are using targeted discussions and e-forum one-to-one questionnaires. We are using voluntary organisations, the health service at local level and are carrying out written and e-mail approaches in groups and workshops. I think that I have addressed the question of getting Royal Assent before the Summer Recess. The recommended minimum intervals between stages of the Bill mean that this cannot be done, but that does not mean that work is not moving forward. The noble Baroness asked why the strategy and the guidance could not be published at the same time. I have already explained that we cannot begin to develop the guidance before the strategy is written. Until we know what the autism strategy will say, we should not publish the guidance. This is a no-win situation: of course we want to implement this but we need to make sure that we get it right. We have made it very clear that training is a key area for public service professionals in our autism strategy. On monitoring progress, it is too early to say what indicators would trigger a review when we have not actually written the strategy yet, but once we have finalised it and highlighted the outcomes of key actions at national, local and regional level that we want to see delivered, then we will set in place arrangements for reporting and evaluation, which will be part of the strategy. The noble Baroness asked about named individuals in the Department of Health who have responsibility for successful implementation. We agree that leadership at all levels is very important for the delivery of this strategy. We have a specialist adviser on autism, and have had since 2007. Our current adviser, Elaine Hill, leads on developing the cross-government strategy and is working to ensure that the strategy consultation reflects the views of stakeholders not only in the wider world but also across government. I am pleased to give the Government’s support for the Bill. I hope that the House will agree that, along with the action that is now under way, it will deliver real improvements to the lives of people with autism and their families.