Consideration of Bill, as amended in the Public Bill Committee.
I beg to move, That the Bill be now read the Third time.
Mr. Deputy Speaker, I cannot tell you how delighted I am to move Third Reading. Reaching this stage is a landmark, and our having done so is due not only to me, as the Member who had the privilege of promoting the Bill, but to the House of Commons at its very best. This has truly been a cross-party effort involving those on the Conservative, Government and Liberal Democrat Benches, and I am delighted that Members of Parliament have come together to try to introduce a Bill which we hope will make a great difference to so many people’s lives throughout our country.
The hon. Member for Portsmouth, North (Sarah McCarthy-Fry) is in her place, although she is no longer responsible for part of the subject area that the Bill covers. I am grateful for the attention to detail that she showed, and for her undertakings in her previous role, to which I shall refer later. She has rapidly moved through the ranks and ended up at the Treasury through sad circumstances, but I know that her competence will be put to good use in that Department and I am sure that hon. Members of all parties wish her well, not least because of the detailed attention she gave the Bill.
Before my hon. Friend praises more Members from across the House, may I pay tribute to her work in taking the Bill through its passage—something which is, as she said, a tribute to the House? She has followed on from the fantastic work of my hon. Friend the Member for Tiverton and Honiton (Angela Browning), who previously promoted such a measure. The work of my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan) in bringing proceedings to an excellent conclusion should be acknowledged on the record.
The congratulations expressed to my hon. Friend, as well as to my hon. Friend the Member for Tiverton and Honiton (Angela Browning) and to Government Front Benchers, are well deserved. However, will she reflect on the fact that, although we can legislate here—that is what we do—introducing mere legislation, even with all-party and Government support, to issue guidance is insufficient in itself? Implementation is critical, especially in respect of training and promoting awareness in a community beyond those who directly care for people on the autism spectrum. That is hugely important—perhaps she will comment on it—because unless people understand what is involved, they will act insensitively and many of the advantages that we are trying to secure today will be lost.
My hon. Friend is right. I refer him to clause 2(5)(f), which specifically covers
“the training of staff who provide relevant services to adults with such conditions”
in the guidance that the Secretary of State issues. That provision is included for the reasons that my hon. Friend outlined.
I pay great tribute to the Minister of State, Department of Health, the hon. Member for Corby (Phil Hope). He is not with us today because he has a vital duty to perform in his constituency, so I am delighted that the Under-Secretary of State for Health, the hon. Member for Brentford and Isleworth (Ann Keen), is here. I am sure that she will do an excellent job today. The Minister of State did not start off entirely supporting the Bill, but, my goodness, he has got behind it. He has done a first-class job in his current ministerial position, which I am glad he continues to hold, because I hope that he will supervise the legislation, if we are fortunate enough to get it through the House today and through the other place in due course.
The Bill has the potential to deliver the crucial improvements needed for the approximately 500,000 people with autism in the UK, who have been neglected for so long. It is the culmination of a great deal of work by many people. The effort that has gone into the Bill is a testament not only to the determination and dedication of many of my colleagues in the House, on a cross-party basis, but to a large number of people outside. I have paid tribute to those people in previous speeches, so perhaps they will forgive me if I do not name them today, but the National Autistic Society and all the other charities that have been involved have done a first-class job on behalf of the group that they represent.
I would like also to thank the Members who supported the Bill and those who served on the Public Bill Committee, which shows what we can achieve when we work together. Lastly, before I get to the substance of the Bill, I would like again to thank my hon. Friend the Member for Tiverton and Honiton, who has been a champion on the issue. The Bill builds on her earlier ten-minute Bill and—to sound just a small sour note—resulted also from the Government’s failure to respond or to fulfil their promises on autism in the past. To be truthful, the Bill is really her Bill, which, because I won a lottery, I have been fortunate enough to present.
Autism was long overdue serious consideration, as outcomes for both children and adults were consistently so much poorer than those for people who do not have autism. A recent report by the NAS found that 40 per cent. of children with autism had been bullied, that 27 per cent. had been excluded from school and that 42 per cent. reported that they had no friends. In addition, 70 per cent. had a psychiatric condition accompanying their autism. For adults, the picture is even bleaker. The NAS estimates that 63 per cent. of adults with autism do not receive enough support, while 82 per cent. of parents or carers of adults with autism say that their child needs daily support just to live independently. Only 15 per cent. of adults with autism are in full-time work and 75 per cent. do not have any friends or find it very hard to make friends, while 40 per cent. of adults with autism still live with their parents. We currently fail both children and adults with autism in this country.
I am sure that my hon. Friend would also agree that there is grave concern among parents of children and adults with autism. The same report to which she has referred suggests that 90 per cent. of parents worry greatly about how their children will survive and cope in society when they leave school or university, particularly given the statistic, which she rightly pointed out, that only 15 per cent. of adults with autism are in full-time work.
That is absolutely correct: the figure is 15 per cent. However, as my hon. Friend knows, and as I know from meeting many adults with autism, their potential is far greater than that. With a small amount of assistance and the correct support, we can allow them to fulfil their potential and live their lives. That is what we should be doing in this country. I hope that the Bill, if it becomes an Act, will give this and future Governments a framework to concentrate on what needs to be provided to that very deserving group of people.
Following on from that point, it is true that parents worry about their children’s education and ability to live independently, as they go through the various developments and cycles of life. However, as a parent, I think—I hope that I would speak for many parents—that the biggest fear is: “What happens when I die?” That has to be addressed.
That is probably the most moving part of my encounters with families with children who have autism. The terrible fear of someone who has a child with a disability of any sort is about what will happen to that child when they are no longer around to give it the sustenance that it needs. That is why I hope that this framework legislation will provide a platform from which Governments can ensure that local authorities and other services are structured in such a way as to give greater reassurance to people in that situation.
Does the hon. Lady not also agree that it is people with high-functioning autism who are the most hidden from services and that their parents have a great deal more to worry about? If someone has classic autism, it is blatantly obvious. We might argue about the quality of the services for them, but at least they have been identified. That is why it is so important that the Bill translates into reality.
The hon. Lady makes an excellent point. The problem is like an iceberg: we can see the tip, but we cannot see the vast swathe underneath. If people do not have immediate parental back-up, they will at some stage reach a crisis. So many commentators outwith this House are preoccupied with expenses and money, but perhaps they would like also to register the fact that unless we make that help available, it will cost the taxpayer a great deal more money to deal with those individuals in crisis. I count the cost in human terms and think what a loss to our society it would be if an individual did not receive the support that would enable them to fulfil their potential when their parents are no longer there.
Autism does not really fit in with many of the structures, and certainly not with local authority service structures. The problem is exacerbated by a lack of understanding of autism among the health and community care professionals, particularly those providing assessments. The resulting exclusion from services can result in an increase in support needs in the long term, with 33 per cent. of adults having developed mental health problems because of a lack of access to services.
Hon. Members who are familiar with the Bill will see that it has gone through quite a metamorphosis since Second Reading. I want briefly to set out why and how it has changed. When the Bill was first introduced, it 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 areas. Following the strong commitments and the undertakings on data collection and provision for children given by the hon. Member for Portsmouth, North when she was a Minister with responsibility for schools and learners, the clauses relating to children were removed from the Bill. She made commitments on behalf of the Government, including one to amend the children and young people’s plans—the CYPPs, the key strategic planning tools for local authorities—in the Apprenticeships, Skills, Children and Learning Bill.
There will now be a new legal duty to ensure that local areas collate and share data on disabled children as part of their CYPP needs assessments, and they will also include children with autism in their plans for children’s services. I hope that the Minister will nod at me—I know that convention means that she cannot intervene, but she made a bold commitment on ensuring that the statutory guidance accompanying the regulations will state that autism must be specified as a separate category. I look forward to seeing those provisions enacted later this year in a separate piece of legislation.
I see both Ministers nodding, which I will take as confirmation of what will be going through.
In debates, and in meetings with Ministers and officials, I was pleased to achieve a broad consensus on the need for legislation and further action, so that people with autism receive the quality of support that they deserve. The clauses relating to adults now look quite different from those in the original drafting, but they are completely in keeping with the spirit of the original Bill and in many instances go well beyond what was covered in the first draft. The statutory guidance covers all the crucial parts, including—I am pleased to say this, because there was a strong feeling among the charities supporting the Bill that these things needed to be included—access to diagnosis, needs assessments, transition planning, strategic planning of support services with adults with autism, and local partnership and co-operation.
The Bill now places a duty on the Secretary of State to introduce a strategy for improving outcomes for adults with autism, accompanied by statutory guidance for local authorities and NHS bodies. If the Bill becomes law, it will be a catalyst for huge progress in meeting the needs of the country’s adults with autism. The NAS and other partner organisations, such as TreeHouse, that have been involved with the Bill have been pleased with this positive approach, and have warmly welcomed the new, amended Bill that I am presenting today on Third Reading.
I have a few remaining concerns, however, on which I should like to seek reassurance from the Minister, together with any further details that she might be able to give me, especially on implementation, which will be the next stage if the Bill becomes an Act. The first issue relates to data collection. The Minister has recognised the importance of data collection to enable organisations to identify and meet the needs of people with autism. Given that the National Audit Office’s recent report on autism found that identifying and supporting people with Asperger’s syndrome or high-functioning autism would save the public purse many millions, I would be grateful if she could reassure me that the proactive measures needed to identify those adults will be put in place, and that those measures will not have to rely purely on making better use of existing data. In addition, I would like reassurance that a particular focus will be placed on identifying adults with Asperger’s syndrome who are not already known to the services. Will she also confirm that the definition of people on the autistic spectrum will specifically include those with high-functioning autism and Asperger’s syndrome?
The second issue relates to strategic planning and joint strategic needs assessments, or JSNAs—hardly a snappy title that rolls off the tongue. These are the key strategic planning tools for the local authorities, but at the moment, more than two thirds of local authorities have no commissioning strategy at all for adults with autism, and only 21 per cent. of all JSNAs include any mention of the needs of people with autism. Can the Minister reassure me that the statutory guidance will specify that JSNAs have to take into account the needs of people with autism?
Another concern relates to identifying which professionals are relevant to autism. The Bill covers all health and social care staff, and that is welcome. However, other staff who play a large part in supporting adults with autism are not covered—notably those involved with employment matters, including Jobcentre Plus staff. Will the Minister confirm that professionals who have a particular responsibility for supporting adults with disabilities will receive an appropriate level of training, be it in the field of social care, employment support or another relevant field? I think I see the Minister nodding. That would go a long way towards reassuring people that, at last, the real needs of people with autism were beginning to be considered across all levels.
I congratulate the hon. Lady on getting this far with her excellent Bill. I have one small concern about coverage, to which I hope she and the Minister will be able to respond. It relates to housing. The definition of a local authority in the Bill rightly refers to the upper tier, which is the tier that deals with social services. However, I have come across many problems in my constituency involving the housing needs of people—especially adults—with autism. In a two-tier area, housing is dealt with by the lower tier—the district council. I would like some reassurance that planning for housing will also be part of the process.
I congratulate my hon. Friend on the Bill; it represents a positive step forward. I, too, am concerned about coverage. Those who work in further education make a big contribution in this regard, and I suspect that, in the old days, such provision would have been covered by the Bill, because FE came under the remit of local government. That is no longer the case now that its funding comes from the Learning and Skills Council, whose many problems we have heard about in recent months. Does she feel that FE should be covered by her Bill? Perhaps it is, and I have missed it. It would certainly be a serious omission if it were not.
My hon. Friend raises a point that has gone through my mind, but this is not an all-encompassing, catch-all Bill. I am afraid that there are lots of areas not covered by the Bill that, in an ideal world, I would have liked to cover. Unless my interpretation of my own legislation is incorrect, I do not believe that further education is specifically covered in the Bill. However, there is a possibility that the Minister may address the matter, because access to education and skills is extremely important for any adult with autism. Indeed, one of the major problems that we are seeking to address is the transition from childhood to adulthood, alongside trying to identify that swathe of individuals hidden under the surface who fail to get any help or support at all. I hope that the Minister will be able to address these points. I suspect that if I had attempted to introduce an all-encompassing piece of legislation, it might not have got as far as this stage.
I was talking about the statutory guidance, which covers the assessment of the needs of adults with autism. This represents a crucial step forward, as a proper needs assessment by suitably qualified professionals is the gateway to appropriate and effective support. I would like some reassurance from the Minister that the assessments will be person-centred—I do not like that term, but it does express the meaning—and that they will be carried out by professionals with an appropriate level of autism-specific training.
A vital part of the strategy’s success will be the timing and scope of the consultation. The Minister of State, the hon. Member for Corby assured us that the dates announced were the latest ones, and that he expected the strategy and the guidance to be issued much sooner than the timetable indicated. I am aware, however, that they will be staggered, and not released in tandem. Will the Minister outline in her speech the timetable for the publication of the documents? Ideally, there should not be too large a gap between the two publications. In addition, will she assure me that, if there is to be a separate consultation exercise for the statutory guidance, her Department will seek the views of all stakeholders, and not just local authorities and NHS bodies, as stated in the Bill?
Another issue of timing involves the review of the strategy, and the question whether it should be revised if it does not produce the intended results. In Committee, the Minister of State said that he did not wish to make a time commitment in relation to when such reviews might take place. His reasoning was fairly acceptable, but questions remain about what might trigger such a review. Will the Minister outline how the success of the strategy will be monitored, and what indicators would trigger a review?
Will the Minister also commit to naming an individual in the Department of Health with responsibility for the success or failure of the strategy? A clearly identified person in an official post covering this area would give the assurance that continuing attention will be paid to the outcomes for people with autism. One of the problems that the families of people with autism face is that, when they try to address an issue with a Government Department, they are unable to track down an individual with a title, a post or a name to whom they can direct their questions. Their case seems to disappear into a spongy area in the Department to be handled by whoever is the latest official to deal with it. I hope that the Minister will be able to give me some reassurance on that point.
I absolutely agree with the hon. Lady about having someone in the Department of Health with that specific responsibility. Will she pay tribute to the Department, however, for having such a dedicated person in place at the moment? Let us hope that that continues.
Absolutely. The hon. Lady’s point is taken. The trouble is, however, that everything changes. I am looking for continuity, security and stability in this area, because a constant state of flux is good for neither man nor beast.
A further remaining concern relates to ensuring the commitment of all the relevant Departments. I am sure that the Minister will agree that joint working across the Departments is essential for achieving an effective strategy for people with autism. What measures does her Department intend to put in place to ensure, for example, that the Department for Work and Pensions plays a full and active part in developing and implementing the relevant parts of the autism strategy?
Finally, the ultimate success of the strategy and statutory guidance will depend not only on their content but on how well they are implemented, as my hon. Friend the Member for Daventry (Mr. Boswell) said. I would like the Minister to guarantee that the implementation plan will be consulted on as part of the strategy consultation; if not, will she outline the steps the Department would be prepared to take to develop the plan to ensure that it is robust and practical?
Adults with autism are much more likely to experience mental health problems, bullying and unemployment, and to be reliant on family or the state for support. We must put that right, so that the needs of people with autism receive proper attention. They deserve the legal footing that could flow from this legislation, not least to redress the position that has resulted in the outcomes of so many being so poor.
I realise that others might want to contribute to the debate, so I will draw my remarks to a close. Better data and information collection at the national and local level has an important part to play in improving outcomes, as does better access to diagnosis and support. If the Bill becomes law, the information collected under it will have the potential to improve our understanding of the support needs of adults with autism, to raise expectations on local services and to ensure that professionals who work with people with autism are properly trained to understand their problems.
To conclude, each and every person deserves the best possible chance to make the most of their talents and fulfil their potential, as I have said before, including people with autism. As was illustrated by the National Audit Office report, by not providing adequate support to people with autism, we are wasting not only large amounts of taxpayers’ money, but human talent and lives. I hope that the Bill will act as a catalyst for change. I am very proud to have been able to continue other people’s work and introduce this legislation by working with people across all sides of the political divide and in the best interests of our society and community.
When we are trying to do something that will affect so many people’s lives and that shows the House of Commons at its best, I think it is a shame that there are no hordes of journalists in the Press Gallery here to see what the House really does for this country. I see a sole, single, lonely journalist up there, perhaps reporting on these matters. He is to be congratulated, and it is a great shame that more people outside the House do not concentrate on the good that we do as a group in it rather than on the subjects covered in newspapers today. I am proud to commend this Bill to the House.
I start by putting it on the record that I was wrong on Second Reading not to wish the Bill to go into Committee. I felt at that time that the strategy and process announced by the Minister of State, Department of Health, my hon. Friend the Member for Corby (Phil Hope) was correct—that we should just get on with it and move towards delivery as soon as possible. However, much water has passed under the bridge since 27 February, when the Bill had its lively, very knowledgeable and somewhat tetchy debate on Second Reading. The crux of the tetchiness was the point I have just made—about deciding the right way forward to achieve our common aims. Between then and 13 May, massive consensus broke out, and what we have before us now goes a very long way to meeting all our sincerest wishes. The Bill now goes further and is better than the original.
I hugely congratulate the hon. Member for Chesham and Amersham (Mrs. Gillan). As my hon. Friend the Member for Burton (Mrs. Dean), chair of the all-party group said, we would not be here or have come so far, had the hon. Lady not chosen to introduce a private Member’s Bill on autism. Behind the scenes, my hon. Friend played a vital part in discussions in progress. She is a modest person and would blush to hear it, but I pay tribute to her.
I omitted to mention the hon. Member for Burton (Mrs. Dean) in my speech, although I had her name written on my post-it notes. I apologise and would like to acknowledge the enormous amount of work that she did. I am sorry that she cannot be here today, but I know that she is busy in her constituency.
I also pay a huge tribute to the hon. Member for Tiverton and Honiton (Angela Browning) for her promotion of this cause. As I said on Second Reading, she was for many years a lone voice in the House, trying to improve services right across the spectrum. I also offer huge congratulations to the Minister of State on responding so comprehensively and enthusiastically to the challenge. It was a great moment when he moved the clauses in Committee.
I am pleased that the hon. Member for Chesham and Amersham decided that it was right to focus on the adult strategy and transition in this particular vehicle. I am also pleased that she has been reassured by the Department for Children, Schools and Families that it is committed to promoting and improving services for children. Nevertheless the statistics for the adult autistic community remain dire, shocking and stark, and that reflects variable practice, to say the least, and bleak prospects for so many. It is worth repeating those statistics: 63 per cent. of adults with autism say that their needs are not met; a third have mental health problems; 40 per cent. carry on living at home; and only 15 per cent. are in full-time work. Moreover, 67 per cent. of local authorities and 77 per cent. of primary care trusts do not collect data. It is scarcely surprising that the National Audit Office found that a good diagnosis, particularly of high-functioning autism, would save the taxpayer many millions. Equally unsurprising is its finding of the high level of frustration experienced in accessing services by so many adults with autism.
The key question—and the reason we are all here—is how we make our expectations translate into reality in order to secure improved services and improved outcomes for the autistic community. Well, as we know, the process has already begun irrespective of our disagreements along the way. We all endorse the practical framework set up to consult on the strategy—the external reference group, which reflects the range of stakeholders and is chaired by Mark Lever, the chief executive of the National Autistic Society.
Four main pillars have been identified: health; social inclusion, embracing employment, to which I will return; choice and control; and training. What makes the Bill so novel is its explicit requirement that the Government must produce a strategy. It requires the Government to improve services for adults and sets a clear time limit— 1 April 2010, so I hope we do not meet it, as the expectation is that the strategy should be completed by the end of the year. The limit merely allows flexibility and will be kept under review.
The statutory guidance is to be consulted on and issued by 31 December 2010. We hope that the interval between the strategy and the guidance will be as small as we can make it, as the hon. Member for Chesham and Amersham said. The statutory guidance will apply to local authorities and NHS bodies—including mental health trusts, which is vital. We had an interesting debate in Committee on how binding the guidance will be on foundation trusts. Because of their autonomous nature, it will not be binding, but a primary care trust contracting with such a foundation trust will still need to ensure that its statutory duty is fulfilled through the commissioning process, so there are some safeguards in the system.
Clause 2 covers all the crucial points that we in the all-party group have argued for over many years. Improving these services will be a challenge. Diagnosis will have to be done by suitably qualified people, and it may need to be done, as the hon. Member for Tiverton and Honiton argued on Second Reading, out of area. Diagnosing high-functioning autism and Asperger’s syndrome is much more tricky and difficult than diagnosing classic autism. As I said, that group is often hidden from services.
The same applies to needs assessments. Transition planning of relevant services is vital, and I am pleased that the Bill includes that. The all-party group has just completed a report on transition and has made a number of recommendations to the Government. Some are more relevant to the Department for Children, Schools and Families, but many are relevant to other Departments, including the Department of Health.
One of the report’s main recommendations is:
“Guidance should require Directors of Children’s Services to maintain a database of the numbers of children with autism in their area and share this information with Adult Services.”
I think that that commitment has already been made. It also recommends:
“Guidance should require that Directors of Children’s Services and Directors of Adult Social Services co-operate to review and plan services for young people with autism on a regular basis, including those children with complex needs in out-of-authority placements.
The Government should extend the duty on local authorities to ensure that a multi-agency person-centred transition plan is developed for each pupil with autism who receives support at School Action Plus from the age of 14, in addition to those with a statement of SEN.
The disabled children’s services national indicator (N154) should be extended and young people’s views gathered in a survey so that there is a specific focus on transition against which local areas can be measured. Any future review of the local government performance framework should address the needs of disabled young people during transition to adulthood.
The Government’s learning disability employment strategy should address the needs of young adults with autism, including Asperger syndrome, in line with Public Service Agreement 16.”
Does my hon. Friend share my concern about the difficulties that some young adults with autism face when, having settled into employment and sorted out their lives, a disruption in the workplace throws all the good work that has been done to the four corners of the earth? Stable, steady employment that could have gone on for several years, and the stable, steady life that would have existed for those years, can be lost because of a change of manager, or another change within the workplace, that disrupts the regular pattern. Young adults with autism find that particularly difficult to manage.
I agree. The culture of the workplace is a key factor in getting young people with autism into employment and keeping them there. It is a real challenge to shift that culture. I shall say more about employment in a moment.
There are four more recommendations on the report’s list. I want to read them into the record because transition is a crucial process. If we get that right, we are far more likely to get adult services configured in a way that secures good outcomes. The report continues:
“The Government should ensure that all children with autism have opportunities to undertake meaningful work experience in Year 10.
The Government must ensure that disability support advisors at further education colleges and universities have autism training.
The Department for Work and Pensions should ensure that Connexions provide information to all young people with autism on Employment Support Allowance and Disability Living Allowance.
JobCentre Plus should ensure that all transition plans include young people’s employment goals and outline the work support programmes available to them.”
Those are all relevant recommendations, and I hope that the Government will give them serious consideration and implement them.
The hon. Member for Chesham and Amersham mentioned strategic planning. Some 74 per cent. of local authorities do not have a commissioning strategy for adults with autism. We are starting from an extremely low base, and that will be one of the biggest challenges to shifting the culture.
On training, I welcome the wider definition of relevant services caught by the National Health Service Act 2006 and the Local Authority Social Services Act 1970. Extending the definition’s scope is helpful. However, 80 per cent. of GPs told the NAO that they need more training and only 29 per cent. of local authority staff who are responsible for needs assessment have training in high-functioning autism. As has been said, Department for Work and Pensions staff are not caught within the definition of relevant services.
On jobs, we cannot underestimate the importance of trying to support people with autism, in particular those with the high-functioning condition, in getting meaningful employment. Whether one has a disability or not, employment is crucial to how people live their lives and feel about themselves. It gives an immense feeling of self-worth. Jobcentre Plus staff are not covered by the definition of relevant services. In particular, disability employment advisers and personal advisers, and also health care professionals involved in work capability assessment, are not caught by it and are not required to have training. We need buy-in from all relevant Departments to make a difference. The DWP must take ownership of relevant parts of the strategy. I hope that the Minister will give us some comfort on how we are going to ensure that other Departments play their part.
Employment has to be a top priority. There are brilliant examples of young and older people with autism who have been happily placed and are settled in their work. I met a young woman at an event the other day. She has high-functioning autism but is immensely talented in IT. She works for BT, where she is supported extremely well, and told me about Goldman Sachs, which also does sterling work in embracing young people with such skills and in supporting them in the workplace. The shopping centre at Meadowhall in Sheffield has a good reputation for doing the same thing.
On local leadership, some time ago the all-party group took evidence from people in local authorities who had specific responsibility for autistic people’s services. One individual—I think from the authority of Sussex; if I have got it wrong, I apologise—was incredibly good. He had seized the agenda by getting all the stakeholders together and making the system work. The services for adults in that authority were far better than in many others.
As I said on Second Reading, we can have a Bill, a strategy, statutory guidance and all the rest, but it will not make a ha’p’orth of difference if they are not implemented. Implementation is complex, but has to be driven from the centre and from local leadership. We need to see sight of the implementation plan, sooner rather than later, in the strategy. The whole strategy needs rigorous, detailed monitoring.
Does the hon. Lady agree that it is not just the implementation that is important; it is also continuing the momentum in other Departments where there has been partial awareness of the strategy and partial implementation of it? One of the things that I have been hunting for in the NAO report is that since November 2005 the Department responsible for disability employment advisers, the DWP, has been taking on updated training so that the advisers are more aware of the needs of people with autism. The figures for Great Britain are that
“of around 500 full-time equivalent Disability Employment Advisors…275 have completed the updated training.”
That is a good thing, but this is not only a question of implementation. We must also continue the momentum that has already started and been seeded in various Departments. That is as important as using legislation as a framework to drive things forward.
Absolutely, but it is all part of the same package: implementing something is a moving process and training is at the heart of that.
I am very proud to be speaking here today in support of a Bill which, if properly implemented, will make a huge difference to so many people and, crucially, their families and carers as well. I wish it well.
I begin by joining other speakers in thanking and paying tribute to the many Members from all parts of the House who have played their part in bringing this Bill to fruition as it receives its Third Reading today. I must also pay particular thanks to my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan), who is a true friend to me. She has worked tirelessly on this subject. She chose it, having finished No. 1 in the private Member’s Bill ballot; I have been a Member for almost 18 years, and I have never even got into the top 20, so she was right when she said she felt as though she had won a lottery. She could have chosen many other subjects, but she chose to promote a Bill on autism. I believe that she will be remembered for many great things in her parliamentary career, but this will certainly be one of her most memorable achievements. Its impact will be felt long after she has left the House, and it will benefit many people and their families.
I also want to pay tribute to the two Ministers who have brought the Bill through to this stage. Although it was a battle in the beginning, it turned out all right in the end—and it turned out better as a result. There was cross-party support and Members from different parties worked with each other, and although there were some tough negotiations—as my hon. Friend knows only too well because she was part of them—there was also good will and a desire to do something good. I am sure we have achieved that in this Bill.
I shall try today to break a personal record by making a shorter speech on autism than I have made before—the House will be relieved to hear that—but as the Minister is in her place I want to flag up a few key points. The National Audit Office report came before the Public Accounts Committee on Monday, and three Departments were represented at the session. I requested for them all to be asked to come back and report on progress in a year’s time, because there is a lot of compatibility between the NAO report and what the Bill intends to achieve. Having listened to the three departmental representatives, who included a permanent secretary, I now think that the Department for Work and Pensions has a long way to go to get up to speed. I will not go through all the issues that were addressed as we discussed them in Committee, but I must stress that getting people into training and employment is essential.
The hon. Member for Erewash (Liz Blackman) has been a great advocate in this House for the need to address the autistic spectrum, and I congratulate her on the work she has done over many years. She said she thought I was a lone voice, but when she joined the House I did not feel that I was alone any more. It is good that so many MPs now not only talk about autism, but are able to handle constituency casework in a way that makes a difference for people with autism. The hon. Lady made the point that when we see that done well—and it gladdens the heart to see it done well—it seems simple to do, and that that is how it should be done everywhere. The PAC listened to the three speakers at the session we held on Monday afternoon, and there was a noticeable change in view: not only was there understanding, but there was a recognition that we must implement the changes being proposed.
I want to raise three points. The first of them is about the statementing process for children in education. We must be very careful that statementing in relation to autism does not neglect those children on the autistic spectrum who do not have a statement of educational needs. There are many of them and, over recent years, the statementing process itself has changed and the criteria have changed, and the people on the more able end of the spectrum, particularly the Asperger’s group, are less likely to be formally statemented, although their needs may be understood and known in the classroom. When people in that group enter the transitional period between leaving school and going into further education or training and ultimately—we hope—into employment, it is important that they are not excluded purely because they have not had the insurance policy of a statement and because there is a rationing system in place that addresses only those with a statement of educational needs.
First, may I apologise for my tardiness in coming to the Chamber this morning? What my hon. Friend says is absolutely right, and does she agree that it is not only a question of children without statements but who are on the spectrum—perhaps with Asperger’s—being vulnerable, but that there is a very real sense in which they can be more vulnerable than anyone else for precisely the reason that she offers: that they do not have what she calls an insurance policy and what I call the comfort blanket or safety valve of a statement? My son is on the spectrum. He has high-functioning autism and he is very fortunate to have a statement, but I have lost count of the number of children I know who are similar to him but who do not have that protection.
My hon. Friend has devoted a lot of time to, and developed a lot of expertise in, this topic and related subjects, and he is absolutely right. It is very important that the practical application of what we are legislating for today does not lead to silos being created and to the exclusion of the very people who need help the most, but who are not able to articulate that.
The second issue that I want to flag up is to do with social services assessments. I shall be writing yet again to Devon county council this week—I have lost count of how many times I have written to it about this—because yet again a social worker has told a mother, “We cannot assess or do anything for your Asperger’s child because they probably have an IQ of over 70.” The mother has now pursued the council to such an extent that it is going to do an IQ test. However, if the council finds that the IQ is over 70, which for an Asperger’s child it probably will be, that will be its get-out clause for saying, “Sorry, not learning disabled, so we can’t do anything.” Department of Health circulars have been issued telling people not to exclude Asperger’s children in this way. I have a copy, which I shall send to Devon county council. I shall also send it the text that the permanent secretary at the Department of Health gave to the PAC on Monday afternoon, showing that that is not how councils are meant to treat Asperger’s children. Somehow, however, when such circulars get sent out, they end up getting put in a filing cabinet and, conveniently, the information does not trickle down to the practitioners on the ground: the social workers, the educational psychologists and so forth. For some reason, they are unaware of this advice. I will deal with Devon county council, but—
I am grateful to my hon. Friend for that remark. I am so weary of having to keep writing the same thing over and again. I ask this of the Minister: when the new information goes out, which will be after I have retired from this place, will she please make sure that it does not fall victim to what I call “the filing cabinet syndrome” so that it never sees the light of day, because that involves a great disservice.
I made a final point on Monday to the permanent secretary at the Department of Health, but I will repeat it now. I have raised two separate debates particularly about Asperger’s syndrome and mental health services. We know—my hon. Friend the Member for Chesham and Amersham gave the statistics—that the whole spectrum of autism, including Asperger’s syndrome, is not of itself a mental health disorder, but people with Asperger’s can develop mental health problems. After all, if any of us had that syndrome and we had struggled to be like everybody else in society—to make friendships, to form relationships, to get a job, to cope independently with life and to communicate with people, because it is a communication disorder—and by the time we reached our early 20s we got nowhere, we would all develop very serious depression and mental health disorders. Such a development is quite common and, as has been expressed, it arises because of a lack of basic facilities and support. Some of the support required is fairly low budget; the National Audit Office report shows how spending a little can save a lot. The problem is that a bit of spending in one Department may mean that a lot is saved in another Department, so inter-departmental interests emerge—again, we are talking about the silo effect.
If we are to serve this population properly, we need to ensure that when they need mental health services, they not only get the right ones but they are supported so that they do not end up with a mental health problem on top of the autism. Once those two things become entwined, it can be difficult to find a psychiatrist who can actually unravel what is a mental health symptom and disorder from what is Asperger’s behaviour in crisis. Very few people in this country can disaggregate the two behaviours and not only diagnose them, but, if necessary, medicate appropriately for them.
I have been involved in two debates in this House on people who fall foul of mental health. When they fall foul of mental health, all too often—these are not rare occasions—people with autism, particularly Asperger’s syndrome, are misdiagnosed with conditions such as schizophrenia and are then medicated for schizophrenia, but the medication does not work. Why would it work for someone who does not have the condition? Such people work their way down through a catalogue of different, very strong drugs, trying them out to see whether they have an effect. By the time they reach drug number five, their brain is scrambled. I have seen at first hand the results of what happens when artistic people with high IQs, who at one time could do the most wonderful paintings, are misdiagnosed and drugged with five highly powerful drugs—they end up with scrambled brains; I can give no other description.
As I have said before—this will probably be the last time that I say this in this House—if a cardiologist misdiagnosed someone’s heart condition and misprescribed in that way, they would be sued, and it is outrageous that this country’s mental health services, particularly those in the provinces, away from the centres of excellence in the bigger cities and towns, have not got the expertise to treat people with autism not only with dignity, but in a way in which they deserve to be treated. I say to the Minister that I hope that the outcomes and the practical application of this Bill will ensure that we do not treat people with autism like that any more—it is criminal; there is no other word for it.
I am grateful to the House for this opportunity to speak, and I look forward to seeing in practice, out there among the autistic community, the outcome of this wonderful Bill.
I congratulate the hon. Member for Chesham and Amersham (Mrs. Gillan) on introducing the Bill, on the vast amount of detailed work that she has undertaken and, in particular, on her tenacity. Excellent joint working has been done across the parties and with the Government, and she has brought certain skills to that: her good humour, her diplomacy, her negotiating skills and much more. All that has brought us to the point that we have reached today.
I also congratulate the hon. Member for Tiverton and Honiton (Angela Browning), who has obviously made an enormous contribution. It began long before I joined this House, but I have been very much aware of what she has done. In addition, she has been connected with quite an important organisation that serves my constituency, although it is not located within it: the Wessex Autistic Society. It is a great honour to follow her. She has brought reality to what we are discussing today and shown us just how serious some of the shortcomings are in the services for children and adults with autism. We are aware of those shortcomings and we have lots of statistics on them, but by talking about the misdiagnoses and what actually happens—the breaking up of people into little bits—we identify what we are about today: we are trying to remedy that situation.
The Liberal Democrats supported the Bill on Second Reading and made it clear that we wanted to have further discussions in Committee. We wanted to do everything we could to support that process, as we felt it could only be beneficial. We did not want to rely just on the Government’s promises, although I am sure that the motivations behind those were good. We needed to ensure that the Bill had more bite in order to ensure that we made progress.
I also congratulate the hon. Member for Erewash (Liz Blackman), who was gracious in expressing that we are rather pleased with this Bill—that is important. Although I played a very small part, I will have some pride in it if we are able to say that we have really changed matters. I congratulate the Ministers who have been involved, because a great deal of work has been done to reach this position, and the large number of organisations that have been involved—I should at least mention the National Autistic Society. I am sorry that I only managed to attend two Committee sittings out of three. The one that I missed was the crucial one, but I have, of course, read the Hansard record in great detail so I hope that I am fully au fait with everything. That was a very important sitting and involved the unusual situation where the promoter of the Bill proposed that her clauses be deleted and replaced by Government clauses.
The hon. Lady has rightly paid gracious tribute to the NAS. I am always conscious that there are unsung heroes and heroines who are actively working and deploying all their skills behind the scenes to secure our objectives. Therefore, rather than confine myself to paying tribute to the NAS, I am inclined to invite her to pay particular tribute to its chief executive, Mark Lever, to Amanda Batten, to Beth Reid and, last but by no means least, because she is a precocious talent, to Ellen Broomé.
I thank the hon. Gentleman for his intervention; I am very pleased to support it, although I am rather conscious of all the people whom we are not mentioning. Thus, I shall not go too far along that line, except to say that my unsung heroes include the support groups that I meet in my constituency, one of which is for adults with autism and Asperger’s and another of which is for parents whose children are at school and have such conditions. Their needs are very different, and that brings home to people the real battle that parents have all the way along the line. I wish to echo the earlier point that parents’ greatest fear is what will happen when they die—that never fails to touch my heart—and we know that we have to make things better for that reason.
May I return to the new structure of the Bill? I think that I shall refer to this Bill—and later, to the Act—many times, because it contains a great deal of detail. I have been told so many times that a certain thing is not suitable to go in a Bill when the discussion has been of what the guidance should include, but this Bill creates a precedent that will be incredibly useful across the board. I give notice of the fact that next time I am on a Committee I shall have this Bill in my pocket, because it is excellent. It is just what we need on this particular subject.
Undoubtedly, the Bill has been a catalyst for the Government introducing their raft of proposals, and today we have the opportunity to put those proposals on a statutory basis. Most of my time in Parliament is spent talking about children, so I just wish to refer briefly to children with autism before I get on to discussing what is now the main part of the Bill. I was pleased when early on the Government committed to amending the children and young people’s plans through the Apprenticeships, Skills, Children and Learning Bill, which placed a new legal duty to ensure that local areas collate and share data on disabled children as part of their CYPP needs assessment and include children with autism in their plans for children’s services. We also have a commitment that the statutory guidance that accompanies the regulations will state that autism must be specified as a specific category. The announcement of further funding for the Autism Education Trust to improve services commissioning is also welcome. All those commitments go beyond what the original Bill covered, and are very pleasing. Although the Bill is a big step forward, there is much more to be done, and much to be improved, in children’s services. We know from the parents we talk to about the gaps that remain, and the situation must be reviewed and monitored.
Children’s services have improved over the years, but the situation remains dire for transition and adult services, with woeful gaps. It is so important that we have reached this point today, and at least made a start in addressing the dreadful gap in services. I was pleased to serve on the cross-party panel of MPs that was established to conduct hearings on services for disabled children. What we heard, loudly and clearly, was that parents felt that they had got through the school years only to have to start all over again with the transition to adult services. We heard again and again that successful transitions could be achieved only by parents literally screaming for the services that they needed.
The problems include inadequacy of transition planning, lack of communication between children’s and adult services, and a lack of co-ordination between different services and agencies. We have referred to the National Audit Office report, and I wish to cite more statistics from it. A quarter of parents surveyed in 2006 felt that transition support was co-ordinated. In other words, 75 per cent. did not think so. Only one in three parents felt that Connexions’ knowledge of autism was adequate.
The lack of assurance of support when a statement comes to an end has been a problem for so long. We know where the gaps are and what is needed. We know that we need multi-agency assessment at the right time, transition plans to be developed with families, and appropriate goals set.
I add my congratulations to the hon. Member for Burton (Mrs. Dean), which I hope the hon. Member for Erewash will take on board, and the all-party parliamentary group on autism on its recently published inquiry and report on transition into adulthood by young people on the autism spectrum. The key points identified include effective and timely planning; realistic but stretching expectations; the need to enable young people to reach their full potential, because we have had too much waste in our society for so long; effective joint working across services; and a key contact. I am very keen on the latter point, because when parents and young adults are engaging with a raft of services they need to have just one person to talk to and to liaise with. Other key points include furthering the understanding of autism by training for all professionals involved; accessible information for young people and their families; and appropriate funding. The key recommendations from that report and inquiry will be timely for the consultation on the strategy and the statutory guidance on the Bill.
The amended Bill will put a duty on the Secretary of State to introduce a strategy for improving outcomes for adults with autism, accompanied by statutory guidance for local authorities and NHS bodies. It will provide a huge opportunity for progress in meeting the needs of adults with autism. The new clause goes beyond what was originally proposed, and the statutory guidance will cover all the crucial aspects, including access to diagnosis; needs assessments; transition planning; strategic planning of support services for adults with autism; and local partnership and co-operation.
On diagnostic services, I recently received a representation from a unitary council in the south-west. It said that in the council’s area
“there is no diagnostic service for adults with autism/autistic spectrum. This means they are unable to access any services and support they might be entitled to and this should be seen as Disability Discrimination. These people, even if high functioning, are most likely to fall under the category of Vulnerable Adults. The only way to achieve a diagnosis/assessment locally is to go privately—which may be unachievable due to financial constraints”.
Many families may be unable to take that step—
Similar situations occur in many parts of the country. Even in Cambridge, where one would expect a higher level of service, many parents find that the only way in which they can get a diagnosis is to take part in academic research projects. That should not be how it works.
I thank my hon. Friend for that intervention, and that is why I am so pleased to see the level of detail in the Bill. The changes that need to take place will not come about without the detail that I mentioned earlier.
On the issue of data collection, the National Autistic Society survey found that 67 per cent. of local authorities and 77 per cent. of primary care trusts do not collect any data on adults with autism. It is clearly a crucial starting point to determine the scale of the problem. I concur with the hon. Member for Chesham and Amersham that we need to be sure that we go the whole way—that we do not just work with the people we know about, but reach out and identify those who have not been identified before.
I read with interest the references in the Committee Hansard to section 7 of the Local Authority Social Services Act 1970, and the hon. Member for Tiverton and Honiton drew our attention to the fact that it was ineffective and not actually implemented. I congratulate the Minister, who clearly took that on board and adjusted the way in which the guidance should be applied to NHS authorities. That struck me as a landmark in the debate.
We have started the journey. We have the luggage and the map, but will we reach journey’s end? It is such a long journey. The NAO found that 74 per cent. of local authorities do not have a commissioning strategy for adults. Some 80 per cent. of GPs told the NAO that they needed additional training and guidance. This is a huge problem and we must not underestimate how much needs doing. Training is necessary across the board.
Hon. Members have mentioned Jobcentre Plus, and it is my experience that even when a young adult is provided with a contact at Jobcentre Plus who is said to have had the relevant training, communication is still difficult—that is probably the politest way to put it—for whatever reason. I have seen some of the e-mails that have resulted, and the dissatisfaction. Communication is a two-way process, and it is difficult, but we need so much more training. We know that more young adults could be in work, and those who are not in work need to access benefits and not get into financial problems because their benefits have been cut off following their failure to fill the forms in on time. We also need cultural changes and the resources—we should not pretend that resources will not be necessary. As has been pointed out, some of the proposals in the Bill mean investing to save. Unfortunately, local finances do not always work like that, because the money is not available in the year when the investment is needed. I would like the Government to take that on board. There has to be longer-term financial planning for local authorities, health services and all others who are involved.
We have rightly raised expectations with this Bill, but as well as raising expectations and making these excellent proposals today, we all have a duty to continue to work on a cross-party basis at all levels of government and to encourage all relevant services to work together. We can do better and we must do better.
It is a pleasure and a privilege to follow the hon. Member for Mid-Dorset and North Poole (Annette Brooke), with whom I have been pleased to work as a co-conspirator for improved children’s and young people’s services for an appreciable period of time. Today is a very important day. It is one that we should mark, that we should celebrate and that we should regard as the springboard to greater things.
I begin my hopefully brief remarks by apologising again for my late arrival in the Chamber. I was detained in my office for a short period on other matters, but I certainly did not want to miss the opportunity to be present today.
Most of the substance of what is in the Bill has been covered and I do not think that it will benefit from further repetition. I want to say a few thank yous, and to underline what I think is important about the issue and this place. First, thanks, of course, are due to my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan), who has piloted the Bill through the House with the combination of eloquence, skill and patience for which she is renowned in all parts of the House. That was a considerable feat, because at first the Government were not keen on the idea of the Bill. My hon. Friend, with good-humoured insistence, kept it up, pressed the case and would not take no for an answer. She was absolutely right to adopt that approach.
I want to pay tribute to the Government, too. I always felt that the Government had good intentions in this matter. I did not subscribe to the rather tedious, old-fashioned, boring and partisan view of some people that the Government were out to scupper the whole idea. The issue was about how to achieve the objective, not whether to do so. As someone who has worked with the hon. Members for Erewash (Liz Blackman), for Burton (Mrs. Dean) and the Under-Secretary of State, I know that the Government are serious about these matters and that they have done a considerable amount on the subject. That is an issue of public record.
It is obvious that, if we work together, we maximise the chance of progress. What is more, we do what the country expects us to do as Members of Parliament, which is to recognise when an issue has a salience and urgency that completely dwarf and diminish the significance of the partisan battle. People out there in the country who have an autistic child or know someone who does could not give a tinker’s cuss whether it is a Labour Government who agree to the passage of such a Bill, a Conservative Administration, a hung Parliament or a grand coalition. Many of them, frankly, could not give a tinker’s cuss about party politics at all. Even if they do, the significance of the issue is far more important to them.
It is such a shame that my hon. Friend was not here for the opening speeches, because I was able to make the point that this House has been acting at its best in a cross-party way. Had he been here, he would have been able to hear that. That has been the special thing about all the people who have been intimately involved with this Bill and who have personally made contributions to it.
I am extremely grateful to my hon. Friend and I would have greatly enjoyed hearing her speech. I have never doubted her commitment to work on a cross-party basis—after all, she was the one offering to do so. However, there are always cynics who do not necessarily think that it is a good idea. It makes sense and we have benefited from it.
As far as the media are concerned, and perhaps I can conclude on this point, I think it was the late Enoch Powell who said that politicians complaining about the media are like sailors complaining about the sea—it is a completely pointless and fruitless activity. Doubtless that is the case, but it is sad that when we work together in a concerted, principled and effective fashion it gets no attention or coverage. The media are just not interested. What a shame. They ought to be. We have done the right thing—
My hon. Friend is saying from a sedentary position that she made all these points in her speech. I am sure that she did, with great eloquence. I have already explained why I was not here and have apologised for the fact. There is no harm in underlining the strength of opinion on this matter.
I rather expected that the hon. Lady would be tolerant of and sympathetic to the point.
Let us go forward in a spirit of togetherness and determination to make things better. I think that we all agree that this subject is important. I sometimes make the point that politics is, in one sense—and perhaps only one sense—analogous to a market place. Just as in a market place, huge numbers of products compete for custom, so, in the field of politics, huge numbers of issues compete for attention and priority. On the basis that people of good will can fairly readily forge consensus about what needs to be done on the issue of autism, the challenge then is to catapult the issue from the back of opinion formers’ and decision makers’ minds to the forefront of their minds and, having so catapulted it, to keep it there. I think that my hon. Friend the Member for Chesham and Amersham and others have succeeded in achieving that objective today.
I was always aware of the danger that this morning’s speeches would sound a little more like an Oscar ceremony than anything else, and I am afraid that I will only add to that. None the less, I say to my children and to my colleagues that when one does something well, one should be proud of it. It should be used as an opportunity to understand better how one can do things better in future. I therefore want to associate myself with all the comments made by my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan). This Bill has indeed shown Parliament at its cross-party best, sharing and joining together in a drive to improve the lives of people with autism. At a time when people are so angry with politicians, this Bill is not only a huge landmark for people with autism, their families and their communities, but might be a small chink of light for Parliament itself.
I also want to pay tribute to my hon. Friend the Member for Tiverton and Honiton (Angela Browning), who has been a voice on this matter for a long time—since long before I ever arrived in the House. I pay tribute to the all-party group, the National Autistic Society and many others, including Ministers. The Government, having originally resisted the Bill, have swung all their efforts behind it and have been remarkably and notably gracious in their retreat.
I want to take this opportunity to pay tribute to Surrey county council. It is one of those councils that everybody loves to hate, but it is cited in the Department of Health’s consultation document as an example of good practice:
“The County Autism Group and autism lead have developed a network of 80 ASC champions across services in all sectors in Surrey. These champions have six months’ training and mentoring and then help cascade this training to their team. Champions are supported to network and share good practice across services. Assessment of this process showed that it had led to positive outcomes for individuals…In addition, the county group and autism lead have supported Surrey County Council and Surrey and Borders Foundation Trust to jointly develop an ASC training pathway with different levels of training for staff in different services.”
The danger today is that, having highlighted the huge lack of services and huge amount of unmet need, we will lose the small pockets—there are some—where there is good practice and where innovative approaches are being taken.
The hon. Member for Erewash (Liz Blackman), who openly admitted a change of mind, paid significant tribute to others, but I want to pay tribute to her for graciously changing her mind and throwing her weight behind the Bill. She referred to many statistics, and I will repeat some of them because they cannot be mentioned too often. There are more than half a million people with autism in the UK, and they struggle to gain access to the services they need. Outcomes for such people are extremely poor: only 15 per cent. of adults with autism are in full-time work, almost half still live with their parents, and more than a third have developed serious mental health problems. A lack of ready access to services has a huge impact, not only on them but on their families and carers. As many Members have said, the parents often worry about their children’s future, when they will no longer be able to support them. Older parents carry around a huge burden, worrying what will happen to their children when they die.
Some 70 per cent. of children with autism have one additional psychiatric illness, and almost half have two or more. A quarter have self-harmed or have suicidal thoughts. If we look at the rise elsewhere in the number of children who self-harm, we see that the figure is likely to increase. The figures are truly shocking. If we spill out a load of figures, there is a danger that people will get figure-blind, and their eyes will glaze over. If we have any members of the press still sitting in the Press Gallery, I ask them to take note of some of the figures and to take them on board.
The Bill, as amended by the Government, puts a duty on the Secretary of State to introduce a strategy for improving outcomes for adults with autism, accompanied by statutory guidance for local authorities and NHS bodies. We hope that, if the Bill is passed, it will be a catalyst for huge progress in meeting the needs of the country’s adults with autism. In many instances, the Bill as amended goes well beyond the original measure. It is in that regard that the cross-party working, and the efforts of my hon. Friend the Member for Chesham and Amersham and many others, have been so effective. We are talking about access to diagnosis, needs assessment, transition planning—a crucial area, and one of many areas where people may fall through the holes in the net—strategic planning and support services, and local partnerships and co-operation.
I should like to highlight six or seven key issues. When the Minister sums up, I hope she will address some of the issues on which there remain questions in some people’s heads. On data collection and the need to identify people with autism, the National Autistic Society’s comparison showing how hard-to-reach groups become easy-to-ignore groups was quite haunting. The key point is that groups of people can no longer be easy to ignore. They might remain hard to reach, but we can no longer ignore them.
Does the hon. Lady not agree that the many people who have high-functioning autism and have never had a diagnosis will be extremely difficult to identify? I am sure that there are data that could help local authorities, primary care trusts and the like to try to make a diagnosis, and to try to identify such people. It will be tricky to do so, and real, proactive commitment is needed, but it is important that we do so.
The hon. Lady makes an excellent point, and, as she rightly says, some of the groups of people whom we are talking about are very hard to reach. That is where training and raising community awareness comes in; I will mention training later. If we look back 20 years, we realise that there are many issues that we, as a community and as individuals, simply were not aware of then. That can change, and it is important that it does, so that friends, neighbours, colleagues and those whom people with autism meet can recognise that a person has unmet needs, and can perhaps alert such a person to the fact that they can present themselves to the appropriate services to ensure that they can live their lives to the full. The Bill ensures that can happen.
We have heard that only 9 per cent. of local authorities are keeping any record on that point—only one in 10. It would be useful if the Minister assured the House that there will be a particular focus on identifying those whose autism is not already known about. The danger is that local authorities, in a rush to demonstrate that they are complying with the legislation, will pick up the group that they already know about and run with them. We need that focus, and a word from the Minister on that point would be helpful.
To build on the point made by the hon. Member for Erewash (Liz Blackman), does my hon. Friend the Member for Guildford (Anne Milton) recall that TreeHouse’s “Constructive Campaigning” parent support project research found that teachers and other staff had not been adequately trained, or trained at all, and still did not recognise the condition of Asperger’s? I am thinking of a quote from the TreeHouse research, in which a teacher said to a parent, “I don’t believe in Asperger’s syndrome.” Of course, it is a matter not of belief, but of fact.
I thank my hon. Friend for that intervention. Of course, it is pretty shocking when one hears of a teacher saying that, but one will hear the same story from families and charities working with, say, children with epilepsy. Children with epilepsy will have absences, will be low academic achievers, and may well be 12, 13, 14 or 15 before anybody realises that they were not just staring out of the window vacantly or failing to pay attention, but had epilepsy. We hear that time and again. I do not want to wander too far from the subject before us, Mr. Deputy Speaker, but bear with me for one moment while I say that there is a need to raise awareness within the teaching profession, and many other professions where people come into contact with children with a multitude of different needs. People in those professions should be alert to conditions such as epilepsy, and should signpost children and their families to possible diagnosis. However, today we are talking about autism.
As my hon. Friend the Member for Chesham and Amersham said, “joint strategic needs assessment” is a terrible mouthful. One of these days—soon, I hope—we will start simplifying the language that we use in government, at all levels, so that ordinary people can understand it. The joint strategic needs assessment must include and mention the needs of people with autism. It would be useful if the Minister confirmed that the statutory guidance will specify that the JSNAs should account for the needs of people on the autistic spectrum.
I should like to say a word about commissioning. Nowhere in the NHS or in local authorities have we really got to grips with commissioning, because the starting point tends to be the services that are available. We decide where those services should be placed, not so as to provide the very best service for specific groups, but so as to serve them as best we can, or hopefully serve them, at any rate. That is the wrong way round. The joint strategic needs assessment will be a crucial tool in commissioning the right services. One must first assess the needs, and then provide the services to meet those needs. That can mean a significant change in services. One of the reasons that does not happen is that it can be very uncomfortable for service providers, as it can mean big changes; it can mean reshaping how services are set up and delivered.
I thank my hon. Friend for the contribution that she is making, from the Front Bench, on behalf of the party to which she and I belong. I was struck by a National Audit Office report in which a consultation was carried out that referred specifically to the services that were available. About two thirds of respondents to a survey of local authorities and NHS bodies felt that the services available were limited. An adult with autism who responded to the consultation said:
“My local social services department does not provide any autism-specific services, so these services are not at all flexible to my needs”.
He was referring to supported accommodation, employment, recreational and social activities, and general support such as advice and advocacy. There is a great need for attention to how services are commissioned and how we identify the needs of people with autism.
I thank my hon. Friend for re-emphasising that important point about the gap between the group of services available and the unmet need. The two are not necessarily in line with each other. If commissioning is done well, what a rocky ride that can be for government at all levels, but we will never get commissioning right in any area of local government or in the health service until we start from the needs of the population that we are trying to serve. Proper needs assessment is necessary to build a platform on which to develop services that dovetail and produce the results that we want to see.
My hon. Friend the Member for Buckingham (Mr. Bercow) referred to the training of staff. Only 15 per cent. of people with autism are in full-time work, so the training of staff in Jobcentre Plus as personal advisers and disability employment advisers will be crucial. That training, as we have already said, needs to go much wider—80 per cent. of GPs said that they needed more training and guidance. Increased awareness of autism among accident and emergency staff and across the community will mean that people with autism are recognised and empowered, and have equal access and opportunities. It would be useful if the Minister confirmed that professionals who have particular responsibility—let us start there—for supporting adults with disability will get specific training to help them support adults with autism.
The fourth aspect is community care assessments. It should go without saying that they should be person-based. It was a long time ago that I first heard the term “holistic care” mentioned—well over 25 years. I see the Minister nodding. We share a professional background, and I am sure that at times she, like me, could weep at the lack of progress. Care assessments must be person-centred, which means that they must be carried out by those with the training necessary to assess the needs of people with autism. I ask the hon. Lady to affirm her understanding of the need for appropriate training for people who undertake community care assessments.
On the publication of the strategy and guidance, I was moderately amused to see in the National Autistic Society’s briefing that the Department of Health had said that it was standard to stagger the publication of strategy and guidance. I always hate it when I read that anything is standard, or that “that’s what we always do”, because an opportunity to do things differently might be overlooked. Perhaps the Minister will explain the policy, as I may have missed something obvious. Will she do what she can to ensure that strategy and guidance are published together, and if that is not possible, will she tell us why not?
In that context, it would be useful for many of the people who will read or who are watching the debate if the Minister gave us some idea of the dates of publication. We need to know that as soon as possible. We frequently hear from local authorities and various health agencies that they are still waiting for the statutory guidance. That is terribly frustrating. Often, local authorities want to get on and start fulfilling their commitments under new legislation, but the guidance is slow in appearing.
My hon. Friend the Member for Tiverton and Honiton mentioned silos. That is my penultimate point, and the subject is a bee in my bonnet. We talk about partnership working, attend joint meetings, make joint appointments, and believe that in doing so, we have achieved joint working. We have ticked the box on working in partnership, but real joint working is about getting out of those silos. Only then can we make the difference. The silos have to go. Government at all levels are desperately resistant to moving out of their bunkers and sharing budgets, experience and the benefits of cost-sharing.
As with commissioning, if we have our eye on the needs of the population for which we are trying to provide services, there should be no reason why we cannot break down the walls between Departments. Will the Minister spell out the measures that her Department will take to ensure that the strategy can be developed and implemented jointly with other Departments, particularly the Department for Work and Pensions?
My hon. Friend is making an admirable speech, but in referring to the DWP she prompts me to highlight an issue often mentioned but as yet not resolved—the off-putting complexity of the application form for disability living allowance. Does my hon. Friend agree that it would help if the Government looked at that again? It is true, to be fair, that the form has been substantially shortened over recent years, but I think I am right in saying—I have some personal experience—that it is still 52 or 54 pages long, and it does not lend itself to speedy completion by people who are not used to having to provide essay-style responses to testing questions.
My hon. Friend makes yet another excellent point. If I recall correctly, my hon. Friend the Member for South-West Surrey (Mr. Hunt), who is not in the Chamber today, introduced a ten-minute Bill on exactly that point a couple of years ago, when he was shadow Minister for People with Disabilities. He pointed out the huge complexity of some forms, which would defeat many of the brightest of us. If we assess people’s needs, and one of their needs is to access services and benefits readily and easily, simplification of the forms must inevitably follow.
Finally, the Secretary of State must keep the strategy under review if we are to hold the present and future Governments to account. To review the strategy, we need to monitor and we need indicators. It would be useful to know from the Minister what indicators will be used to determine when a review of the strategy is necessary, how the Department intends to monitor the progress of the autism strategy, and whether a named individual within the Department of Health will have responsibility for the successful implementation of the strategy at local level. I hope that the Bill will be passed today. Having made huge progress, it is crucial that all the energy and enthusiasm are not lost. What we need is real drive to make sure that, if passed, the Bill starts to produce results at the front line.
Rather like the Oscars, thanks are due all round for the cross-party working, and a cheer for the parents and families who hold together the care of their small children, their teenagers, and their younger and older adult children while we at every level of government have moved painfully slowly in developing proper services to support those families. Those unsung heroes are often wrung out, exhausted and have developed their own health problems, both physical and mental, as a result of their never-ending caring responsibilities.
Whatever our party politics, whatever our background, I have never doubted that all hon. Members came to the House to make a difference. Many of us have struggled at times to make the difference that we thought we could make, if only we found the way of doing it. We often have the opportunity to help individuals with their tax credits and their battles with the many Government agencies and with the local council, but to make a difference throughout the country is not easy. I hope that, today, Parliament has made a difference not only to the 500,000 people with autism, but to their families, friends and carers.
I thank the hon. Member for Guildford (Anne Milton) for her warm words and encouragement and hope that, through my speech, I can address all her points.
I am so pleased and indeed proud to speak to this Bill. I sincerely apologise on behalf of the Minister of State, my hon. Friend the Member for Corby (Phil Hope), the care services Minister, who has played such a key role in its progress. He is very disappointed and sorry that other business prevents him from being here today, but I shall be sure to pass on to him the very kind remarks about his commitment that were made in all parts of the House and, in particular, by the hon. Member for Chesham and Amersham (Mrs. Gillan).
I pay tribute to the hon. Lady. She should be proud of her achievement in introducing the Bill. Her determination to drive it forward, while recognising the need for a realistic and collaborative approach in Committee in order to obtain the ends that she seeks, greatly impressed my hon. Friend the care services Minister. In addition, I recognise the efforts of the hon. Member for Tiverton and Honiton (Angela Browning) in her tireless work to promote the needs of people with autism before the Bill was introduced and since, including her active participation in Committee.
I have the highest regard for the hon. Member for Tiverton and Honiton, because prior to entering Parliament we both had a health background, and we both know how we have struggled to bring our knowledge to the forefront in this place when it has not always wanted to listen. I suppose that we now have to put Devon county council on warning, as this debate has managed to do; the way in which the hon. Lady managed to put across the reality of the misdiagnosis of mental health problems will never leave my mind. I hope that that goes not only for people in the House today but for health professionals outside. She gave an example in which she asked, “If this were a cardiac condition, how would it be managed if it were misdiagnosed?” That was absolutely accurate and to the point. I know that many Members from all parts of the House have the highest respect for her, and after the debate I look forward to perhaps chatting to her about how we can continue to work together.
The Government, like the hon. Members for Chesham and Amersham and for Tiverton and Honiton, are committed to taking action to improve services for people with autism. We are determined to see true, transformational change and a real improvement in their quality of life. Our means for achieving that is the development and publication of an adult autism strategy. The full publication of a consultation on the content of that strategy began in April, and that in itself indicates our commitment.
As Members present know well, my hon. Friend the care services Minister made it clear on Second Reading that, although we shared the principles set out in the Bill, we could not support it in the form it took at that time. That is why in Committee, my hon. Friend tabled the amendments that have made the Bill what it is today. The hon. Member for Chesham and Amersham has eloquently made the case for this Bill, and the figures that she quoted are a powerful testament for the need for action in this area.
I have no ministerial responsibility for this area of care, but since knowing that I would be present today and having been privileged to be a part of taking the Bill forward, I have learned a great deal. Even though I am a former health professional with more than 28 years’ experience, I know that we can still learn a great deal and it has been a pleasure and privilege to learn more on this subject.
The National Audit Office’s recent report on services for people with autism provides further evidence of the needs of people with high-functioning autism and Asperger’s syndrome, and of the types of service and good practice that already occur in some areas. Senior officials from the Department of Health, the Department for Work and Pensions and the Department for Children, Schools and Families appeared before the Public Accounts Committee earlier this week, as has been mentioned, to give evidence on the NAO’s findings. The hon. Member for Tiverton and Honiton took that opportunity to press for continued action to improve services, especially on the diagnosis, assessment and understanding of autistic spectrum conditions, and I trust that she and other members of that Committee were reassured that we take the issue seriously not just in the Department of Health, but throughout the Government.
My hon. Friend the Member for Erewash (Liz Blackman), who spoke with her usual honesty and passionate feelings on the subject, raised the issue of how important local leadership will be to the implementation of services, and I am pleased to say that there will be representatives of the Association of Directors of Adult Social Services on the external strategy reference group.
Clause 1 places a duty on the Secretary of State to prepare and publish by April 2010 a document setting out a strategy for meeting the needs of adults in England with autistic spectrum conditions. By improving the provision of relevant services by local authorities and the NHS, the Secretary of State will be required to keep the autism strategy under review and will be able to revise it. He will have a duty to consult and seek the participation of such persons as he considers appropriate in preparing and revising the autism strategy.
That consultation process has already begun, so clause 1 also contains provisions to ensure that the consultation will fulfil the Secretary of State’s duty, even though it will have not only begun but ended by the time the Bill comes into effect. Similarly, my hon. Friend the care services Minister has made it clear that our intention is to publish the autism strategy by the end of this year. Therefore, the clause also contains provisions to ensure that doing so fulfils the Secretary of State’s duty to publish a strategy even if the Bill has not come into force at the time of publication.
Of course, publishing an autism strategy is only the beginning of the story. The hon. Member for Mid-Dorset and North Poole (Annette Brooke) ended her contribution by saying: although we have packed and started the journey, how will it end? I hope that, with her knowledge of young people and children, about whom she so often speaks, we will be able to complete the journey together.
To that end, clause 2 places a duty on the Secretary of State to issue guidance by 31 December 2010 to local authorities, NHS bodies and NHS foundation trusts for the purpose of securing the implementation of the autism strategy. Some Members may ask why there is apparently such a gap between the deadlines for the strategy’s publication and for issuing the guidance on its implementation, and I shall return to that point later.
Clause 2 also sets out some issues that guidance should cover as a minimum. It requires the Secretary of State to keep the guidance under review and to consult the NHS and local authorities on preparing it and, if the Secretary of State proposes, on revising it. On the strategy itself, there are also provisions to cover the possibility that the consultation on the guidance may begin before the Bill comes into effect, and to ensure that such a consultation fulfils the Secretary of State’s duty under the clause.
Clause 3 is of particular interest. On Second Reading and, indeed, elsewhere, my hon. Friend the care services Minister gave clear commitments that the guidance on the implementation of the autism strategy will have the necessary bite to drive real transformational change. The clause puts that commitment into action. It specifies that the guidance is to be treated as section 7 guidance under the Local Authority Social Services Act 1970, meaning that local authorities will be required to exercise their social service functions in accordance with the guidance. Case law has established that that means more than just taking account of the guidance. A local authority that failed to comply with section 7 guidance without a really compelling reason for doing so would be acting unlawfully.
For NHS bodies, there is no existing provision equivalent to section 7 of the LASS Act. In order to create the same obligation on NHS bodies to act in accordance with guidance issued under clause 2, clause 3 also specifies that, for the purposes of that guidance, NHS bodies are to be treated as local authorities. That means that their functions in relation to the provision of relevant services are social services functions under the provisions of the LASS Act. That means that NHS bodies will be bound by the guidance to the same extent as local authorities, which also means that the case law that has established the status of section 7 guidance as being more than just advice to be taken into account will apply equally in relation to NHS bodies.
I should add that these provisions will not apply to NHS foundation trusts. Although the Secretary of State is required by clause 2 to issue guidance to NHS foundation trusts, they are not covered by clause 3 because the definition of NHS bodies set out in clause 4 does not include NHS foundation trusts. That means that foundation trusts will be expected to take the guidance into account in planning and providing services for adults with autistic spectrum conditions, but they will not have the same duty to act under it as local authorities and NHS bodies. This reflects the greater autonomy of NHS foundation trusts.
In Committee, we had a good debate about this issue, and the Minister reassured everybody that although foundation trusts do indeed have autonomy, when PCTs were commissioning their services they still acted under the guidance, which was incorporated in the commissioning process. That gives reassurance that the guidance will, to a degree, stretch into foundation trusts.
I thank my hon. Friend; using the knowledge that she gained from being on the Committee, she has clarified that point.
The remaining clauses deal with the matters that one would expect to see in any Bill: definitions, extent, application and so on. I do not propose to go through them in detail, but I would just draw the House’s attention to the commencement arrangements in clause 6.
I certainly have no desire to strike a discordant note; as I said, I admire the way in which the Government have taken this matter forward. However, I am a little concerned by the idea that whereas there is a duty to act on the part of the local authority, the responsibility of a foundation is merely to take something into account. It seems to me that it is quite easy for an organisation to say, with a nod and a wink, “I’ve taken it into account, and I’m now pursuing the policy that I want to pursue.” There is real concern out there that taking into account must also mean translating into practice.
The hon. Gentleman, whose earlier contribution demonstrated so well his commitment to the subject, raises the “nod and a wink” approach. I believe that when the Bill goes through the other place, it will be so strong that a nod and a wink will not be involved: foundation trusts will be there to deliver best practice.
Just for a bit of clarity, let me point out that, in Committee, the Minister of State, the hon. Member for Corby (Phil Hope), explained that this is handled through the contracting system. He said:
“Yes. The Bill does not apply to foundation trusts for the reasons that I have just given—wider policy and so on—but if a PCT is contracting with a foundation trust, as I said earlier, the obligation of the PCT as an NHS body to ensure that it is carrying out its statutory duties is, therefore, handled through the contracting process. I emphasise that the NHS foundation trusts have more autonomy in the system, which is why the Bill cannot directly apply to them in the way that it may apply to other NHS bodies.”––[Official Report, Autism Public Bill Committee, 13 May 2009; c. 38.]
I hope that that clarifies the point.
We are here to please.
As I said, my hon. Friend the Minister of State wanted to be present, so he has asked me to say the words that he would have said had he been here. I therefore need to make some progress, if hon. Members can bear with me.
It is a further mark of the Government’s total commitment to the autism strategy, and the improvements that will flow from it, that we have chosen to provide for the Bill to come into force automatically, two months after Royal Assent is given, so no commencement order will be needed.
I want to turn to the links between this Bill and existing Government policy, and how the Bill will support it. I make no apology for reiterating that our commitment to developing and delivering that strategy is rock solid. Indeed, we have already made clear our intention to publish the final strategy by the end of 2009. We are content to underline our commitment by setting ourselves a statutory time scale for doing this—with, of course, a sensible margin for flexibility. We are also happy to underpin our commitment by signing up to a requirement to consult on the strategy.
We are already working closely with a very wide set of stakeholders. We want to hear from as many people as possible whose lives have been touched by autism, whether personally or professionally. We have already benefited from input from an external reference group comprising people with autism, family, carers and health and social care professionals involved in front-line delivery of services. We will continue to work very closely with the group over the next few months to build on what it has already done as we develop firm proposals for the final strategy. We have also commissioned a team of social policy researchers to run a series of consultation events so that we can involve many more people, especially those whose voices are less often heard.
Of course, the development and publication of the adult autism strategy will be only the first stage in the journey of transformation. We will not be simply putting it into the public domain and then leaving local authorities and the NHS to get on with it—a worry expressed by some Members today. The key to real transformation will be a focus on delivering at national, regional and local level. To support that, we will consult on and deliver detailed mandatory guidance to set out what the NHS and local authorities need to do to achieve the changes that we expect to be described in the strategy. Again, the Government are happy to be tied into that commitment by the Bill and to commit to a clear date by which the guidance will be published.
As I said earlier, I know that some might feel that the nine months between the final publication deadline for the strategy and final publication of the supporting guidance is rather a long time, but until we have completed the consultation on the strategy and are more certain about the exact priorities for action, we cannot start working up the 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 those organisations on its content. For example, we need to ensure that we do not set requirements on them that are impossible for them to meet in practice.
I remind the House that we have made a firm commitment that the guidance will be put on a statutory footing for both local authorities and NHS bodies. Although it may well be possible to issue the guidance considerably earlier than the end of 2010, we have taken the prudent step of ensuring that we have sufficient time to do the job properly. We are happy to underpin our commitment to review and reissue the guidance as appropriate. In consulting local authorities and health bodies on the guidance, and on any subsequent revisions, we intend also to seek the views of other key stakeholders.
In amending the Bill, the Government have made a firm commitment on the headline issues that the guidance will need to cover. They include the provision of diagnostic services, information gathering including needs assessments, strategic planning of services, transition planning, work force training and local leadership. Those reflect the key themes identified in the consultation, particularly the importance of public services coming together to assess the needs of people with autism and what support they need to live independently and be included in their communities. Driving a change in attitudes and culture, particularly among all front-line staff who come into contact with people with autism, is particularly important. Of course, the list of themes is not exhaustive or exclusive. The provisions do not preclude the inclusion of other issues in the guidance; they require only that those particular ones must be included.
I turn to the strategy itself. As the House will know, we are currently in the midst of a full public consultation on its content. As I mentioned, in developing the strategy we want to hear from as many people as possible. People with autism and those who know them are the real experts, and their input will be invaluable. We have therefore undertaken a range of different activities to ensure that the strategy is properly informed by key stakeholders.
The consultation document was developed with the help of an external reference group including adults with autism, their parents and carers, health and social care professionals involved in front-line delivery and those with experience in supporting adults with ASD into employment. We will continue to work with that group over the next few months and build on its ideas as we develop the strategy.
That is only one of the many ways in which we are engaging with stakeholders, particularly people with autism and their families. Now that the consultation has been launched we are encouraging as many people as possible to respond in writing, by e-mail or through an online questionnaire—whichever they prefer. We would also like people to organise their own discussion groups, and we are making available a toolkit to support individuals and groups to do that.
Alongside the formal consultation, we are carrying out a range of activities to help capture the views of adults with autism and their carers, many of whom would find it difficult to respond formally to the consultation. Events will be taking place in each of the nine Government regions over the summer. In the first instance, they will include one-to-one interviews and small group discussions with adults with autism and their families, conducted in the way that is most appropriate to the individuals involved. There will also be interviews with professionals working with adults with autism. The activities will be wide-ranging and allow participants to talk about the issues that are most important to them. The findings of the interviews and discussions will then be used to help develop engagement workshops in each of the nine regions, which will delve further into the priority areas for action in the strategy and consider possible solutions.
A number of adults with autism find it much easier to communicate their views online and through e-mails. We are therefore developing an online community to allow those who prefer to communicate in that way to discuss their priorities for the strategy. We believe that that menu of options for involvement in the consultation means that as many people as possible can have their say and help us to develop a strategy that works on the ground.
The House would not expect me to pre-empt the outcome of the consultation. Nevertheless, with the external reference group for the strategy, which is chaired by the chief executive of the National Autistic Society, we have identified the priority themes for an adult autism strategy. They are health, social inclusion, access to employment, choice and control, and training and awareness.
Housing has been mentioned in the debate, and the Government agree that it is an important issue for people with autism. Public service agreement 16 on improving inclusion in society for those most excluded focuses on housing and employment. We will consider housing in our consultation on the adult autism strategy.
I thank the Under-Secretary for dealing with the point. Will she ensure that we take on board the fact that housing is not nowadays generally controlled by local authorities? Housing associations and arm’s length management organisations all have a part to play in providing suitable housing for young adults. It is important to look across the spectrum of housing that will be needed.
The hon. Lady makes a valuable point. In my borough—the London borough of Hounslow—we have an organisation called Speak Out in Hounslow and the Owl housing association, which does great work. We must ensure that we look across the spectrum.
It is worth spending a little time considering the thinking behind the themes and what we hope to explore through the consultation. In the health theme of the consultation, we are seeking people’s views about diagnosis and post-diagnostic support; the importance of understanding local populations through data collection; meeting local need through strategic planning; ensuring that all health services are accessible to adults with autism, and ensuring that people with autism get the right support from mental health services.
Adults with autism, their families and carers often tell us about the challenges that they face in accessing diagnostic and post-diagnostic support. That point has been well made today. They can often struggle to get an appropriate assessment of their support needs from a professional who understands what it means to be on the autistic spectrum. Many people and their families tell us that they feel lonely and isolated after receiving a diagnosis and do not know to whom to turn for the right support and information.
We also need to tackle diagnostic overshadowing. The difficulties that a person with autism experiences with communication, together with a lack of awareness and understanding of their condition and needs, can mean that some professionals do not see further than the person’s autism and thus miss underlying health concerns. I mentioned previously the problem of falling into the gap between mental health and learning disability services. There is also a risk of being inappropriately treated and supported under one of those services. Training and awareness raising, which I will cover shortly, is vital in ensuring that adults with autism get the right care and support from the health service.
There are many examples around the country of good practice, whereby services identify and support adults with autism in their everyday lives. For example, in Northamptonshire Healthcare NHS Foundation Trust, the transition and liaison team provides a diagnostic service and short-term post-diagnostic support service to adults with Asperger’s syndrome. It also supports those with an existing diagnosis, especially during the difficult period of transition to adulthood.
The service focuses on interventions to reduce social isolation and mental health difficulties, and helps adults develop independent living skills and relationships. It helps them access a range of appropriate supported housing options, better social and academic support, and learning opportunities during transition and in continued education. It helps address carers’ needs and supports improved employment opportunities for adults with autism. It also supports better access to forensic services and post-diagnosis emotional support. That sort of service is a brilliant example of how local areas can respond positively. More needs to be done to enable that to happen consistently, which is why delivery and implementation are key parts of the Government’s strategy.
Making reasonable adjustments in a health care setting can be very easy. A mother of two sons, both of whom have an autistic spectrum condition, has told us that her GP is the only means of support that they have, saying:
“He is aware that both function better in the afternoon and so we are always given afternoon appointments. If possible we are given his last appointment so that he can spend longer with our sons if he needs to.
It is also quieter then. He is quite happy to let my eldest son who is 21 read any books with information regarding treatment and also his notes on the screen to make sure that he is happy with what has been written.
He is also aware that our eldest is more comfortable speaking to some of the doctors within the practice than others and this has been noted without it becoming an issue.
If there are no appointments available we can speak to any receptionist and state that we have an arrangement with the practice and we have always been able to see someone within 24 hours.
This goes right across the board within the practice. The asthma clinic, which usually runs on a morning, will also see our son in the afternoons.
I have no doubt that we would sink were it not for the understanding and adjustments made by our GP and his practice. A little understanding really can go a very long way.”
That is an example of the health service delivering a quality personal service and treating those two young men with the dignity that they deserve.
On the theme of social inclusion, we are interested to hear people’s views on how adults with autism can access the appropriate support, including social support, to enable them to be fully included as active citizens in our society. As active and independent members of our community, we all aspire to a home of our own, a social life and the opportunity to pursue the things that interest us, whether they be spending time with friends and family, playing sport, going to the cinema or relaxing over a drink—of two units only, of course.
It is only right and fair that adults with autism should have the opportunity to pursue the same things that many of us take for granted. Adults on the autistic spectrum will have varying levels of need, and it is important that they can access a range of appropriate and timely support, reflecting the complexity of the autistic spectrum, that promotes inclusion. People’s social needs should be met through support to develop and maintain their family life and relationships. They should be able to access meaningful activities of their choosing during the day and evening, and have access to housing that considers how the physical and sensory environment can affect a person with autism.
From what people have been telling us and from the work of the external reference group working with the Department of Health on the development of a strategy, we have heard a number of concerns about the need for strong and committed local leadership to ensure that adults with autism get the right support and access. A good example is the Liverpool Asperger’s team, which is a multi-disciplinary team established in 2003 to address the issue of people falling through the gaps in service provision, which is something that we often hear about. The needs of many people on the spectrum are often misunderstood, leaving many people vulnerable. The Liverpool team is a joint effort on the part of the primary care trust and the local authority. It takes a person-centred approach, provides assessments and diagnoses, offers direct support through its managed care pathway approach and makes referrals to other services.
The team also works with local services, including schools and colleges, mental health services and specialist services, such as those involved in the criminal justice system, and with those receiving support from mental health and alcohol and substance misuse services. The team also offers training and advice to other professionals about Asperger’s syndrome, including through regular awareness-raising sessions, playing a vital role in enabling good practice to cascade through the local area.
The key to getting things right for adults with autism is ensuring that the strategy delivers on the ground. Examples of good practice from across the country demonstrate what works. We are keen for local agencies to learn from each other and to help each other improve local services. We have to learn how to share best practice better and how to communicate it, whether in health or social care. There is an excellent exhibition at the ExCel centre today—it was also on there yesterday—about advancements in health and social care. What has been brought about through innovations in independent living and how people can be assisted would probably be beyond most people’s imagination. I commend all those involved—led by Lord Ara Darzi—in the quality programme. There were many good examples that social services could also have registered with.
In Greater Manchester, multi-agency autism services development groups have been set up in every local authority. The groups look at what can be achieved in their local area by improving current provision within resources. The chairs of these groups sit on the steering group for the consortium and share information about similar problems that different local authorities have come across, and any solutions that they have found. The consortium also funds the National Autistic Society’s family services development project, which provides information, advice and support to families across Greater Manchester. Through the work of this project, information about what is happening on the ground is fed back to the consortium to help to inform commissioning. The hon. Member for Guildford mentioned the importance of getting commissioning right. It appears that Greater Manchester has got the best practice right in that regard, and many of the services with which I have been involved are prepared to share their knowledge of how to achieve this.
The North East Autism Consortium was established to develop a regional approach to addressing the planning and service needs of people with autism. It is working towards the development of a regional commissioning strategy. Four autism services development groups have been set up to share good practice and advise on development.
We know that people with autism have particular problems with social communication and may need specific support in that area. That might involve services such as befriending, social groups or social skills training. From listening to people with autism and their families, we know that these support services can offer a vital lifeline and help to tackle social exclusion. In the National Autistic Society’s “Exist” report, one parent describes a monthly social group as an activity that gives her son the freedom to be himself. Such services are available in a number of areas across the country. We applaud the work that they do in tackling isolation and promoting confidence.
I also pay tribute to the all-party group on autism, which—along with the National Autistic Society—has achieved great things. The chair of the group, my hon. Friend the Member for Burton (Mrs. Dean), was mentioned earlier by my hon. Friend the Member for Erewash, who described her quietly getting on with the work at the back of the Committee, which is typical of her. The group’s commitment to the Bill has been overwhelming, and all hon. Members have recognised that. We should pay tribute to the work of all the all-party groups in Parliament, and to the all-party group on autism in particular, in the context of this Bill.
Newham Asperger’s service is another example of the organisations providing the services that I have described. It organises two monthly social groups, which provide adults with autism with an opportunity to meet other people, develop friendships and share experiences and advice. The service also aims to reduce isolation and build much-needed confidence.
Access to employment is an important factor that has been mentioned by many hon. Members. A further key theme of the consultation is access to training and employment. Our vision is that all adults with autism will have the opportunity to do work that is appropriate to their skills and interests, and have access to the right level of support to meet their needs in the workplace. Adults with autism should be able to access skills and education courses that help them to prepare for work. They should also be able to access support to develop those skills once they are employed, so that they can progress and achieve their full potential. It is also important to recognise that people need support towards employment and that, for some, full employment might not be what they want or are able to achieve. The key is to support each individual to achieve their potential, whatever that might be, and to give them choice and control as part of their person-centred plan.
I am sure the House is aware that personalisation, as well as choice and control, are central to the current direction of travel in health and social care. It will be no surprise, then, that choice and control is a key theme in the consultation on the autism strategy. We want to ensure that adults with autism can access the right support to help them exercise the same choice and control over their lives as everyone else. Within the choice and control theme of the consultation, we are seeking views on how people with autism can be better supported through person-centred planning.
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—
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.
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.
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.
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.
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.
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?
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.
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?
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.
The hon. Lady also asked about strategic planning and joint strategic needs assessments. I have already answered her concerns in my earlier comments, but to reiterate, we expect that those will address the needs of people with autism. We will publish good practice guidance this year setting out what a good JSNA looks like to help assessors to identify the needs of people such as those with autism, who may be at risk of falling through the net.
Next, I can confirm that professionals who have particular responsibility for supporting people with autism, whether in social care, employment support or other areas, will receive appropriate training. I know that that was an issue of particular concern at Monday’s Public Accounts Committee hearing, especially with regard to employment advisers. I can assure the House that the Department for Work and Pensions will review the content of autism-specific training materials for their staff.
I was asked for assurance that assessments of the needs of people with autism will be person-centred and carried out by professionals with appropriate training. Yes, assessments must be person-centred—that is the essence of policy and practice. I have already made that clear.
On the question of the timing of the publications of the strategy and consequential guidance, I understand the concerns that the hon. Lady and others have articulated. I am happy to reiterate that our intention is to make the delay between the publication of the strategy and the guidance as short as possible, but we cannot begin to develop guidance to deliver the strategy until the content of that strategy is finalised. We cannot publish the guidance without a full consultation with all stakeholders, particularly those bodies that will have a duty to act under the guidance. It is our commitment that we will consult all stakeholders on the guidance and not just local authorities and NHS bodies.
On the question of evaluating delivery of the strategy and ensuring a review, it is a little too early to say what indicators would trigger a review, but in developing the strategy we will work closely with stakeholders to develop arrangements for local, regional and national monitoring of the delivery of key actions and will set in place arrangements for reporting and evaluation.
The hon. Member for Chesham and Amersham asked about a named individual within the Department of Health who would be responsible for the success or failure of the strategy. I emphasise that we believe that the key to successful delivery is leadership at all levels from Ministers to the front line. We have a specialist external adviser on autism to support the development of the strategy. Once we have launched the strategy, we could consider whether there is a case for a national leadership role to steer delivery.
I can see that the Minister is getting to the end of her great sheaf of papers and I thank her for specifically addressing the points that I have made. I cannot stress too strongly the need to have a clearly identified position within the Department, as that would anchor the policy on this area firmly within the Department. I make that request again.
I would not have expected anything less from the hon. Lady. Perhaps that could be discussed with the Minister responsible for these matters during the Bill’s passage in the other place.
On the issue of joint working across relevant Departments, I am happy to confirm that, although my Department is in the lead on this matter, it is a cross-Government piece of work. We have a steering group for developing the strategy which includes representation from all relevant Departments including the Department for Children, Schools and Families, the Department for Work and Pensions and the Office for Disability Issues, and we are also working closely with Cabinet Office and the Department for Communities and Local Government.
I can confirm, as the hon. Lady asked me to, that we will ensure that the delivery plan for the strategy is robust and practical. We will assess the impact of the proposals and the benefits, weighing up the evidence in a systematic manner. We will be able to draw on the work of the NAO to develop our analysis.
I am delighted to be supporting the Bill. I am delighted to have been able not just to make my own contribution but to make the important contribution that the Minister of State, my hon. Friend the Member for Corby, would have liked to make had he been able to be here today. We can confirm that the Bill is in a form that the Government can wholeheartedly support as it continues its journey through Parliament. We have made a difference in this Parliament. The hon. Lady has made a huge contribution, along with her colleagues but, of course, as we all recognise, it is the families and the people with autism who have made real progress. I hope that the House will give the Bill its Third Reading today and that the other place will ensure that it becomes an Act.
Question put and agreed to.
Bill accordingly read the Third time and passed.