Autism Bill

Second Reading

10:52:00

Moved By

Baroness Pitkeathley
That the Bill be read a second time.

Baroness Pitkeathley
My Lords, it is an honour and a pleasure to bring this Bill to your Lordships’ House, and I know that the 500,000 people with autism in the UK and their families are watching its progress with great interest. I thank colleagues around the House for their support and interest. Although the number of noble Lords who will speak today is small, it is extremely select, and I am particularly pleased that the noble Lord, Lord Freud, has chosen this Bill on which to make his maiden speech. I know that we all look forward to that very much. I have been encouraged, too, by the good wishes of many Members of this House who have an interest in this issue and would have been here had their diaries permitted. The noble Earl, Lord Howe, and noble Lord, Lord Astor, for example, have a strong personal interest in the topic.

I also acknowledge the support of the National Autistic Society, which very much welcomes the Bill. This Bill is an excellent example of how relatively small changes in legislation can make huge changes in the lives of people with disabilities and their families—something that I have had the honour of doing before as a result of several Bills on carers. The Bill is also a marvellous example of cross-party working, and gives parliamentarians something to cheer about and be proud of: two things that may have been singularly lacking in our work in recent months.

The Shadow Secretary of State for Wales, Cheryl Gillan MP, introduced the Autism Bill to the House of Commons in January this year. The original Bill required local authorities and their partners to take a strategic approach to meeting the current and future needs of children and adults with autism in their area. However, following strong commitments from Sarah McCarthy-Fry, Parliamentary Under-Secretary of State for Schools and Learners, on data collection and provision for children with autism, the clauses on children have been removed, and the Government are committed to amending the children and young people’s plans—the so-called CYPPs: the key strategic planning tool for local authorities—through another Bill, the Apprenticeships, Skills, Children and Learning Bill, to place a new legal duty on local authorities to ensure that local areas collate and share data on disabled children as part of the needs assessment and include children with autism in their plans for children’s services. The Minister also made a commitment that the statutory guidance that accompanies the regulations will state that autism must be specified as a specific category on these registers. The Bill is therefore a very good example not only of cross-party working but of cross-departmental working.

Even the clauses relating to adults have gone through quite a metamorphosis since their original drafting. The new Bill puts a duty on the Secretary of State to introduce an adult autism strategy for improving outcomes for adults with autism, accompanied by statutory guidance for local authorities and NHS bodies. The statutory guidance covers all the crucial parts, including access to diagnosis, needs assessments, transition planning, the strategic planning of support services for adults with autism, and local partnership and co-operation. That strategy is currently being consulted on. Everyone who works with those with autism and their families knows that that range of guidance is necessary to help them.

The Bill has six clauses. Clause 1 contains provisions on the duty to prepare and publish an autism strategy. Clause 2 covers the duty to issue guidance on implementing the strategy, while Clause 3 deals with the duty on local authorities and NHS bodies to act under the guidance. Clauses 4, 5 and 6 cover other aspects. The Bill, as amended in Committee in the other place, places a duty on the Secretary of State to prepare and publish, not later than April 2010, a strategy for the improvement of health and social care services for adults in England with autistic spectrum conditions. The Secretary of State is required to keep the autism strategy under review. He or she will be able to revise it, and has a duty to consult when doing so.

In addition, the Bill requires the Secretary of State to prepare and issue, not later than 31 December 2010, guidance to the NHS and local authorities on implementing the strategy, to keep the guidance under review, and to consult the NHS and local authorities in preparing it, particularly if he or she proposes to revise it substantially. The Bill also contains provisions that will create a requirement on NHS bodies and local authorities to act in accordance with the guidance issued by the Secretary of State.

The Government have made welcome public commitments to publishing an autism strategy by the end of 2009 and to issuing subsequent guidance with real power to local authorities and the NHS on how to implement that strategy. A full public consultation on the strategy was launched in April this year and is ongoing. Fundamentally, the Bill places the Government’s existing commitments on to a statutory footing so that the Government can be held to account. Although the Bill extends to England and Wales, it will apply only to England.

I want to draw a few things to your Lordships’ attention. Clause 1 imposes a deadline for publishing the autism strategy of not later than 1 April 2010. Clause 2 imposes a deadline for issuing guidance on the implementation of the strategy of not later than 31 December 2010. It is quite unusual for deadlines as specific as these to be included in a Bill, but it responds to the need of Ms Gillan and the National Autistic Society to have concrete guarantees of action within a reasonable timescale. Commitments have been made to publish the strategy by the end of this year. I know that the intention is to stick to that timetable—I am sure that the Minister will confirm that—so the deadline in the Bill is a belt-and-braces one that gives additional leeway.

On the timing of the consultation on and publication of the strategy, Clause 1 provides for consultation on the autism strategy before the Bill comes into force to fulfil the Secretary of State’s duty to consult on it. In the same vein, Clause 2 provides for consultation on the guidance on implementing the strategy before the Bill comes into force to fulfil the Secretary of State’s duty to consult on it and to deal with what might seem to be a mismatch in timing between the implementation of the Bill and the ongoing consultation to which I have already referred. The consultation began in April and is expected to run until mid-September but it is unlikely that this Bill will complete all its stages before then. It may be that the strategy is published before the Bill comes into effect. It was therefore important to ensure that all the work being undertaken would count for the purposes of the Bill. Hence, the inclusion of these provisions.

I want now to draw your Lordships’ attention to the mechanism by which the Bill will impose a duty on local authorities and NHS bodies to act under the guidance of the implementation of the strategy. This is rather an innovative procedure, which may not have been done before. For local authorities, specifying that the guidance is to be treated as Section 7 guidance under the Local Authority Social Services Act 1970—some of us may be old enough to remember the so-called LASS Act; I certainly am—means that they would be required to exercise their social services function in accordance with the guidance. A local authority which did not would be acting unlawfully. But for NHS bodies, there is no existing provision equivalent to Section 7 of that Act. Of course, it is very important for those with autism and their families to have equal attention from local authorities and NHS services. Most people are involved with both, but they do not know the difference between them—indeed, why should they?

The guidance will have the same force for NHS bodies as it will for local authorities. The Bill creates the same obligation on NHS bodies, which will be treated as local authorities, and their functions in relation to the relevant services will be under the provisions of the LASS Act. That was a key concern for the sponsors of the Bill and for the National Autistic Society. It of course breaks new ground and arguably creates a precedent for the NHS, of which the chief executive is aware, and may be important in future years for other people with disabilities. The autonomy of NHS foundation trusts has been preserved by not including them in the definition of “NHS body” in the Bill. They will not be under the same duty to act under the guidance of other NHS bodies, although their general duty to take into account any guidance issued by the Secretary of State will apply.

Finally, Clause 4 lists those bodies and agencies to which the Bill applies and for whose staff suitable training on the Bill and guidance should be provided. However, we should remember that other staff, with whom those with autism and their families may be in contact, can also play a significant role in their lives. I am thinking, for example, around such things as employment, the staff at Jobcentre Plus, the DWP and those who may act as gatekeepers to other services. It will be important to ensure that their input and training is kept under review. In fact, it is a very welcome provision that the Bill states that the Secretary of State must keep the autism strategy under review and revise it as necessary. The effectiveness of the strategy and the statutory guidance will ultimately depend not on their content, which we are debating today, but on how well they are implemented. I am sure that with the support that the Bill has received from several government departments, with the commitment of Ministers, the vigilance of the National Autistic Society and all those who have been involved, we can ensure that implementation goes ahead satisfactorily.

Like all Private Members’ Bills, this Bill is modest in its aspirations, but it will certainly not be modest in the effect it has on the lives of those with whom it is concerned. I commend it to the House and I beg to move.

11:03:00

Lord Freud
My Lords, I am delighted to rise for the first time in your Lordships’ House in support of this Bill. First, perhaps I may place on record my appreciation to the staff of this House for their helpfulness towards me and my family. I am particularly impressed by the way in which the Doorkeepers thrust notes into my hand as I wander through the corridors. They clearly have a much better idea of where I am than I do.

Let me turn to the Autism Bill. I congratulate my honourable friend in another place, Cheryl Gillan, on championing this Bill and the noble Baroness, Lady Pitkeathley, on so ably introducing it in this House. I should like to take the opportunity to draw your Lordships’ attention to the close connection with another Bill before this House, the Welfare Reform Bill. The underlying concept in that Bill is that, if we invest in a disciplined fashion in people who need help in making their way in the labour market, we all win—that is, the individuals concerned, society and the taxpayer. The autistic fit exactly into this paradigm. Indeed, when I was compiling my independent report on this matter two and a half years ago, autistic people were one group that I had explicitly in mind. With the right support, autistic adults can make an incredible contribution in the workplace. Many have an attention, a focus on detail and a sheer perseverance that can be invaluable attributes in particular jobs.

Two forward-looking employers—BT and Goldman Sachs—have programmes that allow people with autism to make this kind of contribution. BT has told me that autistic people are highly prized for their extraordinary facility with numbers. The tragedy is that, according to estimates provided to me by the National Autistic Society, only some 50,000 adults with autism, or 15 per cent, have regular work. The approach presaged in the Welfare Reform Bill would allow us to find the very considerable resources necessary to transform the lives of those adults with autism. It would do so despite the very difficult times that we are facing, when the economic pressures on spending will inevitably be severe. Properly organised programmes, managed with financial rigour, should allow the 15 per cent figure to improve dramatically.

With your Lordships’ indulgence, I should like to take advantage of this unique opportunity to place some more personal remarks on the record. My family arrived here 71 years ago at a very difficult time for this country and the world. They escaped only because Sigmund Freud, my great-grandfather, was a well known figure. My father and grandfather were both desperately proud to join the Armed Forces of their newly adopted home. Indeed, my father parachuted back into Austria in 1945 as an officer of the SOE and single-handedly captured the enemy aerodrome of Zeltweg.

The descendants of Sigmund Freud have been accepted and have thrived in this country. I cannot remember a single occasion—not one—when I have been made to feel an outsider or that I did not belong here. That is a remarkable testimony to the tolerance and generosity of this country. I firmly believe that—perhaps with one or two exceptions—I would not have been able to make that statement of any other country in the world. While I would not presume to speak for all Freuds, who are a fiercely individualist group, many of them will, I know, join me when I place on record in this place and at this very difficult time my gratitude to this great country for all that it has done to nurture the Freud family and other families who have come here for freedom and to achieve their potential. I thank the House for its indulgence.

11:10:00

Baroness Tonge
My Lords, I congratulate the noble Lord, Lord Freud, on his fascinating maiden speech and I welcome him to the House. His remarks about people with autistic spectrum disorder in the workplace were extremely useful and we look forward to hearing more about that. He made several interesting references to his family. I was wondering what Sigmund Freud said about autism, but I do not think that the word existed in his day. I will have to look through my psychiatric text books, if I still have them, to find out what was the nearest word. I also loved the noble Lord’s comment about not knowing where he is. I remind him that we are given a life sentence to this place, so before we die many of us will probably get to the stage of not knowing where we are. We must all look forward to it. I thank the noble Lord for his contribution.

Over a year ago, on 19 March 2008 to be precise, the noble Lord, Lord Maginnis of Drumglass, led a debate on this subject. I spoke in the debate and, in a very full and informative reply, the noble Baroness, Lady Thornton, gave us reassurances that an enormous amount of work was going on and that various initiatives were already in place. She mentioned the Early Support programme, extra funds for the National Autistic Society and for the further involvement of TreeHouse—both of these are wonderful charities—programmes to improve training for teachers, and funding for the Autism Education Trust to improve teaching and social work. All this is making a difference. While nothing is ever enough, of course, tremendous progress is being made for children with autism. However, as the noble Lord, Lord Astor of Hever, said in that debate, enough attention is still not being paid to the transition years and adults with autistic spectrum disorder. This was the subject of a recent report from the All-Party Parliamentary Group on Autism.

I thank the noble Baroness, Lady Pitkeathley, for introducing the Bill so ably into this House after its passage through the House of Commons. It concentrates on the transition phase from school years to adulthood and the management of adults with autistic spectrum disorder. As someone who years ago as a local councillor and doctor and then as an MP battled to help individuals with autism and their families, I want to emphasise yet again the need for co-operation between health services, social services and education. I see that the noble Baroness is nodding in agreement. Co-operation is still a headache, but it was a nightmare in my day. I understand that the joint needs assessment that each primary care trust and local authority are supposed to have undertaken to assess the needs of people with autistic spectrum disorder in their area has not really produced much in the way of results. Only 21 per cent of PCTs have actually done these assessments and I hope that the Minister can explain to us why that is and how they are to be implemented.

I apologise because I must rattle through a series of questions, to which I know that the Minister will write with her responses if she cannot answer now. I want to put on the record during this debate how much I appreciate the efficiency, pleasantness and extreme speed with which the noble Baroness always responds to queries and other points raised in debates. I turn now to my questions.

Do we know whether each area has a lead person responsible for the joint strategic needs assessments to be made by PCTs and local authorities? Who is that lead person? We know that the planning of support and care for adults with autistic spectrum disorder needs to start well before the age of 18 when they leave formal schooling. Are we sure that each individual has a key worker in the run-up to reaching 18, someone with the right training to be able to identify individual needs and plan for the future? I am sure that this will be developed in the strategy, but how many offices of the Department for Work and Pensions up and down the country have in them professionals trained to recognise autistic spectrum disorder and able to advise people accordingly?

A huge problem faced by adults with autistic spectrum disorder was mentioned by my noble friend Lord Addington in last year’s debate. Some people do not have the condition recognised when they are children. As they move into adulthood, sadly, some end up in the criminal justice system and, even worse, can often go to prison. What are we doing to identify these people before they get into trouble? What happened to the national prevalence study that was announced two years ago? So far as I know, it has not yet seen the light of day. It would be useful to have the answer to that.

I think that two weeks must pass between the Second Reading and the Third Reading of a Bill, which means that there is little time for this Bill before the Summer Recess. I urge the Minister to try to persuade the authorities to ensure that it gets through before the Recess, or three months will be lost. Only a nod is required from the Front Bench. It does not take long and there must be a way in which we can do this so that we are able to take advantage of the Summer Recess to get going on the work. Perhaps I am asking for a miracle, but I am sure that the Minister will work on it. We need the publication of both the strategy and the guidance as soon as possible.

There is increasing interest in the diagnosis and treatment of individuals with autistic spectrum disorder. It presents a huge problem when it occurs and, without proper provision and support, it can create enormous stress in a family, sometimes leading to relationship break-up, which I have seen on several occasions.

On a very pragmatic level, the National Audit Office has found that simple interventions that occur early, whether for children or adults, can save huge amounts of money later on, so they are extremely cost-effective. People with autistic spectrum disorder deserve society’s support, which must be properly planned through a strategy and with no more delays.

11:18:00

Baroness Verma
My Lords, I, too, join noble Lords in congratulating my noble friend Lord Freud on his very eloquent maiden speech. It is obvious that my noble friend will be an exceptional addition to your Lordships’ House, to which no doubt he will bring great experience and wisdom. I thank the noble Baroness, Lady Pitkeathley, for introducing this important Bill. It is heartening to witness the high level of cross-party support that the Bill has received. The National Autistic Society has called the response by Members of Parliament “unprecedented”. My honourable friend Cheryl Gillan is to be congratulated on her central role in bringing this Bill forward, and I am pleased to see her here today. I also thank the noble Baroness, Lady Pitkeathley, for setting out so clearly and eloquently its provisions in this House. I will of course have to repeat a number of points that have already been raised by noble Lords, but it is important to do so.

We all recognise the importance of supporting those suffering from autism in our society and the need to ensure that they can enjoy a quality of life that we would wish for ourselves. At Second Reading, my honourable friend Cheryl Gillan described some of the shocking detail of the lives of more than 500,000 children and adults with autism. It is worth repeating some of those statistics today. Some 42 per cent of children with autism have no friends, and the proportion rises to 75 per cent for adults, while 40 per cent of children with autism have been bullied or harassed. The number rises to 50 per cent among adults. This suggests that not only is there a failure to support and understand children with autism, but that this gets progressively worse as they grow up This is a story of exclusion and alienation that leads to unacceptable outcomes for people suffering from autism. Evidence shows that 27 per cent of children with autism have been excluded from school and that only 15 per cent of autistic adults are employed. We must engage with all the related partners to ensure that appropriate information and support is available to children right through to adulthood.

For a great many of us, it is self-evident that the Bill should enforce statutory requirements on the National Health Service and local authorities to look after people with autism, rather than only guidance. I celebrate the consensus that has been developed as the Bill has progressed. Earlier, in debates in another place, Phil Hope suggested that a Bill was not needed. Mr Hope’s statement that,

“legislation can be a very blunt and crude instrument for driving through change”,—[Official Report, Commons, 27/2/09; col. 545.]

seemed almost unbelievable coming from a Government characterised by a 12-year long addiction to legislation. It is therefore gratifying to see that this is no longer the Government’s position and that the Bill has been approached in a real, meaningful fashion.

A good example of where specific guidance is necessary is in the statutory guidance for joint strategic needs assessments. Currently, only 21 per cent of all JSNAs include any mention of the needs of people with ASD. Thus the vast majority of local authority and PCT partnerships are failing to consider the needs of people with ASD. The Government have confirmed that good practice guidance will be published this year to help assessors identify the needs of people with autism in their areas. I do not think it is enough to produce only good practice guidance. Can the Minister confirm that statutory guidance will specify that JSNAs must take into consideration the needs of people with ASD? Can I press her for a further assurance that community assessments will be carried out by professionals who have received appropriate levels of autism-specific training? Can the Minister also assure the House that this will be part of the strategy and statutory guidance?

The timing of the publication of statutory guidance, set currently at no later than 31 December 2010, means however that there could be a possible nine-month time lag between that and the publication of the autism strategy. Would it not be better for them to be published together as this would aid local authorities and PCTs in working out which elements of the strategy will be in statutory requirements? Can the Minister say why there is this delay?

The statistics regarding the lack of local information about both children and adults with autism make for chastening reading. According to the National Autistic Society, two-thirds of local authorities do not know how many children with autism live in their areas. This in itself is worrying, but, sadly, it rates better than the fact that, in comparison, only two local authorities in the country know how many adults with autism live in their areas. This chronic lack of information makes any coherent approach to tackling the difficulties faced by those with autism quite impossible. If these numbers are not known, local authorities can, quite simply, not address the needs of people with autism in their areas as they plan their commissioning of services.

I am certain that we are all aware that such a situation is unacceptable. We on these Benches wholeheartedly support the Bill’s aim to improve this information. On a more specific note, while I acknowledge the view in another place of Phil Hope that the details of improving the identification of adults with autism spectrum disorders will be determined during the consultation period, can the Minister inform the House of the steps that the Government will take to ensure that taking such measures will be proactive and focus particularly on those adults who are currently unknown to the services?

It is important that co-ordination between children and adult services offers a seamless transition for children with autism as they reach adulthood. If children with autism are to reach their full potential, there must be improvement in the support they are offered by local authorities and in the information that they and their parents are given. As the NAS has stated, 40 per cent of adults with autism live with their parents, relying on them for much of their support. This is a pernicious situation for these people and their families which can be alleviated with the proper support from their local authorities. A seamless transition requires a holistic strategy for people with ASD. How can the Government ensure that all relevant departments will participate? Will the support demonstrated by the DCSF for children with autism be built on by working effectively with the Department of Health and the Department for Work and Pensions?

We agree that this joint approach is vital for the success of the autism strategy. For better employment opportunities, it must be a key priority for this process. What measures do the Government intend to take to ensure that the DWP plays a central role?

It is reassuring that the Government have already begun work on the adult autism strategy in line with the duty the Bill will place upon the Secretary of State to introduce such a strategy. The Bill offers us a huge opportunity to positively affect the experiences of adults with autism. In its current form the statutory guidance provides for access to diagnosis, needs assessments, strategic planning of services and transition planning, and for local partnerships to meet the needs of adults with autism. The success of this guidance and of the strategy will surely depend upon the quality of their implementation. The implementation plan proposed by the Department of Health will be central to this. Can the Minister tell us whether the implementation plan is being consulted on as part of the strategy consultation? If this is not the case, what action is the Department of Health taking to develop a robust and practical implementation plan?

It is an indictment of the approach that has pertained in this country towards autism that over three-quarters of local authorities do not currently have an autism training strategy. Will the Minister assure the House that there will be appropriate guidance and training in local authorities?

It is encouraging that the Bill has provisions to ensure that statutory guidance includes the training of staff who provide the relevant services to adults with such conditions. “Relevant services” do not include such professionals as disability employment advisers. Can the Minister give assurances that these DWP professionals will have the training to enable them to support adults with ASD in finding employment, and how this will work in practice? Can she also confirm that the Government intend to provide appropriate training for all professionals with a significant role to play in supporting adults with autism? How will this be supplied? Is she able to outline whether any measures are to be put into place to ensure that appropriate housing, such as warden-controlled accommodation, will be available for adults with autism to encourage independent living?

It can make the difference between people with autism fulfilling their potential or remaining excluded from mainstream society. The National Autistic Society makes a valid point when it argues in its press release that,

“exclusion from support increases isolation and can escalate to mental health problems and other serious difficulties”.

The commitment from the Government to placing a legal duty on local authorities to collate and share data on disabled children, with autism as a specific category, is to be applauded.

Clause 1(4) requires the Secretary of State to keep the autism strategy under review and to revise it if necessary. This will require monitoring at local, regional and national levels. It will also require effective frameworks for evaluation and guidance. For this to be implemented successfully, it is important that there will be a designated person. Can the Minister say how the Department of Health intends to monitor the process of the strategy and what indicators will trigger a review? Will she commit to having a named individual within the health service who has a responsibility for successful implementation?

It is particularly pleasing that the interpretation clause of the Bill gives responsibility for both diagnosis and provision of support to local authorities and the National Health Service. It is crucial that there is no fudging of responsibilities or a lack of clarity. I am sure that noble Lords will offer the benefit of their great expertise to ensure that no opportunity to strengthen, clarify or improve the Bill is missed. I look forward to the Minister’s response.

11:29:00

Baroness Thornton
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 made 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.

11:45:00

Baroness Pitkeathley
My Lords, I thank all noble Lords who have spoken. Their wisdom, experience and commitment have been apparent in their contributions. I particularly thank the noble Lord, Lord Freud, whose maiden speech managed to be moving, elegant and robust. We look forward to many more contributions from him.

I thank my noble friend the Minister as well. Her efficiency and caring have been acknowledged here today, and that has been more than apparent in her reply and the impressive way in which she has dealt with all the questions. I, too, am disappointed that there will be a delay in getting this Bill on to the statute book. I wish we could get Royal Assent today. None the less, I am reassured that work will continue apace, even though, for us, there will be a certain amount of delay.

In Herefordshire, where I live, I have been helping a family with an adult autistic son and watching the struggle that they have had to understand a system which may be more familiar to many of us but is not to them, all the time coping with their son’s behaviour, his distress, and the distress it causes them. When I see them tomorrow, I shall be a little more hopeful about his future. I thank all noble Lords.

Bill read a second time and committed to a Committee of the whole House.