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Mrs Cheryl Gillan (Chesham and Amersham) (Con)
It is a pleasure to serve under your chairmanship, Ms Clark. As you know, I always approve of a woman being in the Chair. It is a great privilege to open this debate today. I am pleased to see so many colleagues from both sides of the House joining the debate, which reflects the importance of the subject.
I understand that the Department of Health plans to publish its revised version of the adult autism strategy for England on 2 April, coinciding with world autism awareness day. Today’s debate is therefore timely for us to identify for the Minister what we think and what our constituents have told us are the key priorities for the revision of the strategy. I look forward to hearing from the Minister about the Government’s plans, particularly those to take forward the actions that people require, because we need support for the estimated 460,000 adults with autism in this country.
It is just over four years since my private Member’s Bill on autism became the Autism Act 2009. I still thank colleagues on both sides of the House for making that possible. The passing of the Act was an important landmark in the battle to improve the lives of adults with autism in England. I want to thank everyone, including the people who at first opposed the Bill but who came round to my way of thinking, because they made the Act the first disability-specific legislation ever to be passed in this House.
As we all know, autism is a lifelong developmental disability that affects how a person communicates and makes sense of the world around them. It is a spectrum condition, meaning that it affects people in different ways, making awareness of the diagnosis even more important.
Back in the ’90s, my colleague, Angela Browning, now Baroness Browning—some hon. Members will remember her—made me only too well aware of what happens to adults with autism, particularly if they are being isolated or ignored. Over the years, awareness grew of the needs of adults and children with autism, but even by 2009, there was still no meaningful recognition at Government level of the challenges faced by adults.
Robert Halfon (Harlow) (Con)
I congratulate my right hon. Friend on securing this debate on a subject that is incredibly important. Is she aware that 85% of adults with autism in the UK are not in full-time employment? Translating that to my own area, Essex, that is around 7,000 people. The Government have set up Disability Confident, which helps people with disabilities to get into work, but it does not focus on people with autism. My local autism charity—
Robert Halfon
My local autism charity, Parents and Children Together for Autism, has set up a pilot apprenticeship scheme focusing on people with autism. Does my right hon. Friend agree that that should be rolled out across the country?
Mrs Gillan
I congratulate my hon. Friend’s local charity on setting up that apprenticeship scheme. That is important. When I started looking at autism all those years ago, one of the interesting things I realised was how valuable people on the spectrum can be. They can make a fantastic contribution to businesses right across the board. Apprenticeship schemes should be looked at quite carefully by the Government. If there is an example in my hon. Friend’s constituency, I am sure that the Minister will take it on board and perhaps even arrange a visit to see how it operates.
Adults with autism were still being overlooked by local services back in 2009. They were falling through the gap between learning disability and mental health services, because no one had responsibility for taking a lead locally to ensure that appropriate services and support were being developed for adults with autism.
The diagnosis can become more complex as a person gets older and often needs a referral to a specialist centre, for which out-of-area contracts are often needed. Some local authorities are doing that, but some, I am afraid, are not. That is why the Autism Act was so important. As a piece of disability-specific legislation, it set a legislative framework for that gap to be closed and for the responsibility to improve support for adults with autism to cover every local area.
Tim Loughton (East Worthing and Shoreham) (Con)
I congratulate my right hon. Friend. I remember well the Autism Act and the many hoops that she needed to go through to get it passed. I am sure that she is aware of the findings from the National Autistic Society, which said that just one in three people said that, in their experience, social workers had a good understanding of autism. There is a big cliff edge between children and adults, with services completely changing or becoming non-existent when someone reaches 18. Does she agree that, given the big emphasis now being placed on the better training of social workers, particularly regarding vulnerable children, we need to do a lot better with training social workers to deal with adults as well, in terms of the sensitivities and requirements of people with autism?
Mrs Gillan
I agree entirely with my hon. Friend. When I come to talk about the actions I want the Minister to take, I will ask him to ensure that local community care assessors have autism training.
Kate Green (Stretford and Urmston) (Lab)
I congratulate the right hon. Lady on securing this debate. I apologise that I will not be able to stay for all of it, but I am pleased that she secured it this morning. I agree with her that it has been a good product of the 2009 Act, for which she rightly claims credit, that local authorities now have to give special consideration to meeting the needs of adults with autism. As many local authorities have now raised their threshold for support to substantial and critical levels of need, does the right hon. Lady share my concern that that may begin to exclude some of those adults?
Mrs Gillan
That is a point to be taken on board. There is variation across the country that we are all aware of. The Minister will have noted the hon. Lady’s remarks, and it is important that we try to get more standardisation across the country.
The Act guaranteed the introduction of the first-ever adult autism strategy, setting out how adults with autism should be better supported. It was underpinned by guidance and placed duties on local authorities and the national health service to take action. The strategy has been well supported by the National Autistic Society; I think everyone in the Chamber and beyond would pay tribute to the NAS, which does the most amazing work right across the board. Its “Push for Action” campaign has captured people’s imagination. It calls for urgent action to end the wait for the everyday support that people with autism need.
Annette Brooke (Mid Dorset and North Poole) (LD)
I was delighted to support my right hon. Friend’s Autism Act, which was an enormous step forward, and I congratulate her on securing this debate, because it is exactly a push for action on what we have achieved so far.
I want to draw my right hon. Friend’s attention to a point raised by a constituent of mine who said:
“I have a bright son who is now 21 and spends every day isolated at home as there is no support or help available for him. I would like him to find a job and make friends but he will need help”.
When we get down to those individual cases and almost the waste of lives compared with what could be done, I certainly hope that we can secure something for this next push.
Mrs Gillan
I am grateful for that intervention. This place is about making legislation, both primary and secondary, but for each and every one of us as MPs, it is those individual cases that strike home to our hearts. It is a valuable role for an MP to bring individual cases to the attention of the House, as the hon. Lady has done, because it makes both our laws and their implementation better. I think that we will all have stories of families and individuals in our constituencies who need more help, and there is nothing more moving than a parent coming to plead for help for their child.
Robert Halfon
The NAS has highlighted that only 10% of adults with autism receive employment support but 53% would like to receive it. Does my right hon. Friend agree that we need to focus on that issue?
Mrs Gillan
Yes. I rely a great deal on statistics from the NAS, which does detailed work in this area. It is still a crying shame that we have wasted capacity and wasted lives in this area, and we should not stand idly by and let that happen.
Having said that, I am gratified by what has been achieved so far in improving the support at the front line. Just for starters, almost all areas now have someone who is responsible for improving services for adults with autism. It might not seem much, but that development alone has been a mighty step forward. I will also highlight some progress in my own constituency of Chesham and Amersham where there are two clinical commissioning groups and they have agreed that one of them will take the lead on autism issues for the whole county, identifying within the two CCGs a GP who will take work on autism forward. That is the sort of activity that I want to see being replicated across the country.
Elsewhere, I know that some excellent and innovative practice has emerged on issues such as training and diagnosis. Sadly, however, as I am sure other colleagues will testify, progress is still patchy and many areas have not made progress as rapidly as we had all hoped for when the Act was passed.
Research by the NAS shows that, four years on from the passage of the Act, many adults with autism are still waiting—unjustly, in my view—for the support they need. Seventy per cent of adults with autism who responded to the recent NAS survey said they are not receiving the help they need from social services, and more than a third of respondents said that they needed help with simply washing and dressing. In addition, two thirds of respondents said they needed help to prepare a meal and 83% said that they needed support to pay a bill or to deal with letters. Those are things that we all do every day of the week, but in the majority of cases adults with autism are unable to get help from their local council to deal with them.
There is also a lack of clarification between low-level and high-level support. Low-level support services are often right for individuals, as they can prevent them from developing more complex problems and therefore can be almost disproportionately cost-effective. My grandmother used to have a saying about such situations: “A stitch in time saves nine.” That is exactly the principle that we should apply in this area.
The impact of such a lack of support is quite clear. The NAS research indicates that a third of adults with autism have developed a severe mental health problem because they lack support. Of course, the statistics vary slightly, but one statistic I will cite is that just 15% of adults with autism are currently in full-time work. We must urge our local authorities to press on, and the necessary support and impetus must come from Government.
The good news is that we are to have a refreshed strategy—it is the Heineken moment for the Minister. I will turn now to the priorities for that refreshed strategy.
Tim Loughton
Before my right hon. Friend downs the Heineken, may I take her back to the alarming statistic she just cited about the number of people with autism in full-time employment? Does she agree that there is an onus on businesses to do more, as many of the smarter businesses have done in the past? Those businesses particularly took on board the sensitivities and requirements of people with autism, and considered how they might be encouraged to apply for a job in the first place; many people with autism never even get to that hurdle. Not surprisingly, many of those businesses turned out to be rather good employers, and we need some rather more enlightened employment practices from some more of our businesses.
Mrs Gillan
I agree entirely. I am amazed by the intellect and the unique and fantastic capabilities of some people on the autism spectrum. Many of them have the capability to repeat jobs that demand high intellect, such as the regular quality-checking of components. There are some really valuable people on the spectrum whose skills are being completely wasted, and if there is some way in which we can mirror the apprenticeship scheme and encourage employers to hire them and spread the word that they are the people they should be looking at, although they may require some rightly deserved special attention, that would be useful.
To start with, we must establish base camp. Therefore, I particularly want to hear some assurances from the Minister today that the core elements of the original strategy and statutory guidance will not be lost once the revised strategy is in place. Local authorities and the NHS are at differing points in implementing the current strategy. The strategy has set them on the right path to ensure that the needs of adults with autism are properly accounted for in local planning and commissioning, because it clearly sets out that there must be local leadership on autism to help bridge the gaps in local services and it also makes it clear that every area must have a pathway to diagnosis, as well as appropriately trained staff, which was the point made by my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton).
We must make sure that the progress that has already been made on those issues is recognised as the strategy is revised. I need to congratulate those areas that have taken forward all the key actions that were originally in the strategy, and I hope that the Minister will ensure that those areas that are yet to make progress on the fundamental aspects of the original strategy are clear that that is not acceptable and that they need to take immediate action.
Can the Minister reassure me and the House that the revised strategy will restate the importance of every local area guaranteeing to take the following actions, if they have not already done so? They are: first, appointing a local autism lead; secondly, establishing a local autism partnership board; thirdly, ensuring that autism is included in local data collection and the joint strategic needs assessment; fourthly, developing a local plan; fifthly, ensuring that there is a local pathway to diagnosis; sixthly, ensuring that autism is included in standard equality and diversity training for all staff across health and social care; and lastly, making sure that the community care assessors in the area have autism training. Of course, the restatement of those core actions will not be enough to ensure that change is happening at a local level, but the Government should set a timetable to check that those actions have been carried out across every area of this country, preferably by the end of this year.
I know that the Minister will say “What of the money that is available?” One of the key challenges that I and other colleagues regularly hear about is the financial constraints that face professionals when they seek to develop new and innovative local services. Gaining funding approval has been especially problematic, as there are few evidence-based models of good practice on which to base such approval, even though financial modelling has shown that these types of services can and do save money; it is my grandmother’s old adage again. Investment in new and dynamic service models will not only help local authorities to improve the services that are currently available to adults with autism, but will help to develop an understanding of the best way to deliver services and highlight areas of best practice.
I, and many other people, also place high importance on data capture between health, education and social services, so that those services have a better understanding of the number of children who will move into adult services. Capturing that data is not rocket science and it will mean that the provision of transition services can be better planned for and budgeted for. When I look at this area, it always amazes me that there is no co-ordination of the transition from childhood to adulthood, and people just fall through the gap.
I know that the Minister has agreed to consider the proposal from the NAS for an innovation fund as part of the review of the strategy, and when he responds to this debate I look forward to hearing an update from him about that proposal. I hope that he will be able to respond positively to what, in one way, is an ambitious proposal but, in another way, is very modest.
In conclusion, each and every person deserves the best possible chance to make the most of their talents and fulfil their potential, including people with autism. As illustrated by various reports on autism, including the National Audit Office’s report, with which the Minister is familiar, we are not only wasting large amounts of taxpayers’ money, but not providing adequate support to people with autism, we are also wasting human talent and lives.
The Autism Act has, with a lot of help from colleagues, been a catalyst for change, but more work needs to be done. I urge the Minister to make sure that he seizes this opportunity presented by the refresher to take forward ambitious actions, such as increased investment, which will help ensure that adults with autism throughout the country can be supported to live the life they choose and the life they deserve.
Katy Clark (in the Chair)
I remind hon. Members that interventions should be brief.
Jim Shannon (Strangford) (DUP)
I am pleased to make a contribution to the debate, and I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on bringing this matter to the House for consideration. Autism is an issue that I have helped constituents with on many occasions, as an elected representative. I am mostly aware of it, probably, in respect of how we can help those with autism through the benefits system. That is perhaps people’s first introduction to the issue. The right hon. Lady clearly laid out the issues pertinent to those with autism, and also mentioned the pressure that families are under. I want to dwell on that.
Diagnosis of autism has been increasing. I have been involved in the support of autism services for many years in Northern Ireland, through my constituency work and, formerly, in my role as a Member of the Northern Ireland Assembly and as a local councillor. I am sure that all hon. and right hon. Members in this Chamber can think of examples of when they have fought to have a child statemented, so that they could receive the help that they and their family needed for schooling, and so that support could be given to the family. Although this debate is about adult autism, autism affects people from the very beginning. I shall try to speak about that as well.
I recently spoke to a young mother of three who, with her husband, was beginning to attend parenting classes to help them better deal with their daughter. It was not that they were not willing to deal with her, but they needed help dealing with the behaviour issues of those with autism. We are talking about lovely children—and lovely adults—but they need help. The couple have two other lovely children, a great family support network and a close group of friends who help out, yet they recognised at an early stage that they needed more help and needed to be better equipped to deal with this. They said that they needed help understanding autism, so that they could understand and interact better with their child.
Mr Gregory Campbell (East Londonderry) (DUP)
Does my hon. Friend agree that even in 2014, after a number of years in which awareness of autism has increased significantly—it has done so particularly in the past 15 or 20 years—there is still a need for many statutory agencies to act and react much more sympathetically and proactively, particularly in dealing with parents who have autism and have difficulties with parenting skills?
Jim Shannon
I thank my hon. Friend and colleague for clearly setting out the issue for the bodies responsible for helping parents. The parents I mentioned came to me about parenting skills, and they got the help, by the way, which was good. They told me what a blessing these classes were. That is why I am happy to stand with my colleagues today and highlight the needs of sufferers of autism and their families.
I am familiar with the care of one autistic young man. Many hon. and right hon. Members here have personal knowledge of such situations, and I hope that some of them will have a chance to contribute to this debate. That young man’s parents do everything for him: they dress him, cook for and feed him, clean, bathe and toilet him, amuse him, and hug, kiss and love him. He depends on his parents entirely for his every need. When he is at his day classes, they do the washing, ironing, cleaning, and shopping and try to find time to work to pay the bills at the same time.
The pressure on the parents and on the family unit is greater because of the problems and behavioural issues related to the autism of their child. They love their son—that is never in dispute—but love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. Sometimes help is needed on matters outside of parental skills—through social services, for example, giving a bit of respite. Difficulties in the benefits system are practical issues for parents and those with adult autism; they relate to how parents can help their child through the school years and into the early years of adult life. It is up to the community and us as elected representatives to step up to the plate and help that boy and his parents. We can do that by supporting them and offering them the best that our society can do to ensure that they do not reach the point of no return.
We can all relate to the story of Susan Boyle, who has Asperger’s syndrome, which is also autism. She found out that she had it later in life. After she was diagnosed, she said that she almost felt relieved to know, after all those years, what was wrong and why she was different. That is a practical example of how someone the nation knows has been affected. She said what she said because she felt it was important that other people knew that autism cannot and will not hold people back, but they need help to get along. That is the thrust of this debate.
Kate Green
Does the hon. Gentleman agree that we need to raise awareness across society of the circumstances of adults with autism? For example, a young man in my constituency, looked after by his parents in the way that the hon. Gentleman describes, got severely into debt because he did not understand what financial services companies were saying when they were pushing credit cards and loans on him. Does he agree that educating the business community, neighbours and community groups, and everyone in society, about how adults with autism respond and cope would protect people and prevent those things from happening?
Jim Shannon
I thank the hon. Lady for her valuable contribution. Yes, I agree; I think all hon. and right hon. Members would. Churches have intervened to help in a number of complex cases in my constituency. What is not complex for us is complex for people with autism. There is a clear role to be played in that regard. Only 15% of adults with autism are in full-time employment; again, that results from some of the issues that they suffer from, including epilepsy, sleep disturbance and mental health problems. Many out there are trying to help and assist.
I ought to give a Northern Ireland perspective, because we have done good, helpful work there, health being a devolved matter. The Minister is aware of that good work because he has visited a number of times. Perhaps he might comment on that in his response.
The Northern Ireland Assembly put in place the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. The need to do something was recognised at an early stage, as was the fact that the power was there to do it within the devolved Administration, and that was done. It is the first legislation in Northern Ireland requiring by law all Departments to plan and work together on the delivery of the strategy. The cross-governmental attitude that the right hon. Member for Chesham and Amersham requested is there. My hon. Friend the Member for East Londonderry (Mr Campbell) and the hon. Member for Stretford and Urmston (Kate Green), who both intervened on me, have confirmed that that should happen. Departments worked together on the delivery of a strategy. No cross-Department barriers are allowed at all. When we say “comprehensive”, we mean it. I am delighted that the debate is calling for such a strategy.
Autism Northern Ireland was at the centre of the campaign for the Autism Act (Northern Ireland) with its grass-roots campaign. There was no money or external lobby company—just hard work, and determination to make it happen and to gain support from all parties, which was forthcoming. It had autism ambassadors—health and education party spokespersons—to build up expertise on issues of concern. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy. That was the foundation of the Celtic Nations Autism Partnership—Celtic as in “keltic”, and certainly not “seltic”. No offence to any Celtic supporters who might be here, of course. That is a partnership with the autism societies of Scotland and the Republic of Ireland, which has led to initiatives in the USA. The CNAP and Members of the Legislative Assembly visited the US Congress and the European Parliament.
When we say that the approach is comprehensive, we are talking about looking across Europe and the world; examples were considered and discussions took place. That led to the Autism Act (Northern Ireland). A partnership was initiated with Autism-Europe and MEPs to develop a comprehensive and well-thought-out European autism strategy.
In 2012, I highlighted the difference between the Autism Act (Northern Ireland) and the English Autism Act 2009: the Northern Ireland Act is equality-driven and lifelong-focused. Perhaps the Minister will indicate whether the Government are trying to achieve in England the equality and lifelong focus that we have in Northern Ireland through the Autism Act (Northern Ireland) 2011. That Act amends our disability discrimination legislation, too, to include those with social communication disabilities such as autism. That supersedes the Great Britain Equality Acts, which only give recognition and guidance in primary legislation. That is significantly different from how we did it back home, where we have attempted to address adult autism.
I again thank the right hon. Member for Chesham and Amersham for securing the debate. She, like me and everyone else in the Chamber, sees the gaps in the strategy and the need to enhance provision by including an adult strategy. I have raised today the cases of a young girl and a young adult male. The strain on families grows greater with time as the child becomes an adult and more difficult to handle. The legislation should be amended to provide more state help.
Andrew Selous (South West Bedfordshire) (Con)
I apologise for not being here earlier, but I was unable to get out of a meeting. One of my constituents contacted me to say that now that her daughter is 20, none of the professionals dealing with her daughter will speak to the mother. Does the hon. Gentleman think that we should make changes, so that with the young person’s permission, if they are over 18 and want their parents involved, all the different organisations work with the parents, who are there for their autistic children as they get older?
Jim Shannon
I agree entirely with that most helpful intervention. In my experience as an elected representative, that is exactly what people want. We should help whenever we can. The Minister for Health, Social Services and Public Safety in Northern Ireland has been anxious to collaborate with the Department of Health on what is working well in Northern Ireland. I have great respect for the Minister of State, Department of Health, but perhaps things could work better. There are examples of good work on the mainland. I looked through the background notes this morning before the debate, and one thing that caught my eye is that there is a specialist autism unit at South Devon college called the LODGE—Learning Opportunity for Development and Guided Education—which has been shortlisted at a national award ceremony in recognition of the education it provides to young adults with autism. There are many good examples of how Departments can do better for young adults with autism, and we should be trying to make that happen.
I am keen to assist and work with the right hon. Member for Chesham and Amersham to ensure that adequate legislation is introduced to make changes that will greatly affect the lives of those with autism and their carers. Never forget the carers, who also need support. They love their children, but they need help, because things are not simple. They want their child to have the best future possible, which does not include an institution. How will we deal with ageing parents? I know that I am not the only one who is aware of ageing parents. What will happen to these children and young adults when their parents pass away? They may no longer be able to look after their children and young adults alone. The answer is clear: they need support, and we must put it in place. Hopefully today is a first step towards providing that support to families across the United Kingdom of Great Britain and Northern Ireland. I support the right hon. Lady and her proposal.
Mr Robert Buckland (South Swindon) (Con)
It is a pleasure to serve under your chairmanship, Ms Clark. Indeed, it is a pleasure to follow the hon. Member for Strangford (Jim Shannon), who made some powerful points on cross-departmental working. I am glad to see the Minister is here with the lead civil servant on autism from the Department of Health, with whom I have had many conversations about cross-departmental working.
I have a quick example of cross-departmental working in relation to the transition period. We have all had casework in recent years involving 17 or 18-year-olds who are moving away from secondary education into further education and who find that their transition period is, frankly, stymied by lack of clarity on the funding of their FE places. I have had a number of such cases. Last year was particularly problematic in certain instances. That was through no-one’s ill will, but it was a result of the lack of genuine communication and cross-working between those responsible for the funding of further education and the other services that work with young people with autism. They are young adults coming into the adult world, and their first experience is negative. That is not a good sign of what is to come, not only for those young people but for their families and carers. There is a fear that I call the 4 o’clock in the morning syndrome, which is when a parent wakes up and thinks, “My child is young now, but what will happen when they grow up?” We keep having to ask ourselves that question. It is the exam question that I set for the Minister in today’s debate and at every opportunity we have to discuss the strategy for adults with autism.
I pay tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for her sterling work to help to bring the Autism Act to the statute book, which was before I came to this place. The Act means that the autism strategy, which is now being revised, is the core document for local authorities and all providers and commissioners of services across England in working with and providing a proper strategy and service for adults with autism.
I have the pleasure and honour of chairing the all-party group on autism, and I enjoy working with Members from both sides of the House. The all-party group has had significant success in the years since it was founded in 2000 not only in campaigning but in achieving real change for children and adults with autism and their families. As my right hon. Friend said, the Act has, in certain areas of the country, delivered that real change. I am delighted that in my constituency in Swindon we now have not only an autism partnership board, the meetings of which I have attended, but an efficient adult diagnostic service. Our social enterprise, SEQOL, was commissioned to provide that diagnostic service, which is one of the best in the country. We are now able to identify adults in their 50s, who are getting a diagnosis for the first time. That is important for them and is an acknowledgement not only of the questions and issues that they have been raising over the years but that, for far too long, far too many people have lived without any support or diagnosis. Diagnosis, of course, is only the first stage. What comes next is as much a challenge, and it is a question that we need to answer.
Tim Loughton
My hon. Friend is a much greater expert than I am on autism. I was one of the founding officers of the all-party group on autism back in 2000, and it has done important work in this area, among the most important of which was our work with schools and local authorities to encourage early diagnosis, joined-up work and greater consistency in how we detect autism in the first place. If we can do that and tailor the school experience to the special needs of people with autism, we will not end up with people not being detected until as late as their 40s or 50s, which means that they miss out on a whole lifetime of support.
Mr Buckland
I entirely agree with my hon. Friend. I am grateful to him not only for his work on the all-party group but for his work as shadow children’s Minister and as children’s Minister in this Government. He played his part in ensuring that early diagnosis is a step closer to reality. The Children and Families Bill, which is shortly to be enacted, now incorporates education, health and care into one plan for young people who previously received statements of special educational needs. I am talking about children, but what my hon. Friend says is relevant. If we fail to take those early steps, the problems that manifest in later life become not only more difficult for the adults and their families but more expensive for the state. One example is that adults with Asperger’s are seven times more likely to come into contact with the criminal justice system than those without the condition. Why? Because Asperger’s is still a relatively unknown condition. It is not understood by many agencies that deal with it, and misunderstanding leads to sad results.
Mr David Burrowes (Enfield, Southgate) (Con)
I thank my hon. Friend for his extraordinary leadership and for having a positive impact in a relatively short time on the understanding of autism. On Asperger’s, he will share my concern for those who unfortunately fall into the criminal justice system, but how far do we need to go to ensure that all agencies properly understand Asperger’s? Just last week, a constituent told me that Atos did not have a clue on how to deal with it. His older child was completely let down by the work capability assessment.
Mr Buckland
My hon. Friend, of course, has constituency experience with the Gary McKinnon case of how we can reach a dreadful situation where, because of a complete misunderstanding of the condition, serious consequences can flow. He makes an important point about Atos, and we have seen the difficulties that it has got itself into. It is unacceptable that we have a system that does not properly recognise these conditions. Frankly, it is a scandal. We can do far better than that, not only for adults with Asperger’s but for the range of invisible conditions—I do not call them hidden conditions, because the word “hidden” has connotations of its own—right through the gamut of mental health. We do not have a grip of that, either in the benefits system or with some other agencies.
Mrs Gillan
I pay tribute to my hon. Friend for his chairmanship of the all-party group. He has been driving forward progress in this area in a superb fashion. In my experience, the issue he is discussing also manifests itself in all sorts of strange areas. If a local authority or housing association dealing with an adult with Asperger’s has no idea of that individual’s sensitivities, it can positively harm that individual and others surrounding them, leading to immeasurable costs to the taxpayer and in the damage done to the individual.
Mr Buckland
I entirely agree. It is time that we recognise that conditions such as autism are particular disabilities that open a gateway to specialised housing. Unless we deal with that, we will carry on down the failed route of institutionalisation. We can see the logical conclusion of that in Winterbourne View and other serious examples. The Minister has a passion to deal with these issues, and I know he agrees that independent, supported living in properly tailored, properly built housing—it does not yet exist in any great measure—is what is needed for adults with autism if we are to avoid the tragedy that I and other hon. Members see week in, week out, whether we are canvassing or in surgery. We see young people sitting upstairs in the family home, without a job and they do not know what to do. They have no support, and their families are at their wit’s end in knowing what to do. We have to do better than that, and they deserve better.
On interface with agencies—I was talking about criminal justice—in many police areas, we now have autism alert cards. That system works well in Wiltshire, which is the police force area in which I live. We relaunched our autism alert card only last week. It is a simple thing: a bit of plastic with next of kin details on it. Importantly, the card tells the reader that the person carrying it has autism. That should trigger a series of events happening and make the police aware that autism is a factor. If various support services and care services are needed, they can be brought into the package and the family and the support network can also be informed about the incident or problem that the adult is having. Those simple measures can make a great difference.
Mr Henry Bellingham (North West Norfolk) (Con)
My hon. Friend is being incredibly generous. Where do GPs sit in all this? He has mentioned awareness and the need for different agencies to work more closely together. Does he agree that GPs should be given more training on autism at medical schools?
Mr Buckland
In a word, yes. GPs would welcome it and it would, at a stroke, deal with a whole range of unidentified problems. With greater awareness among general practitioners, referrals can take place. Where there are existing diagnostic services, as there are in Swindon, they can be used and, as I have mentioned, SEQOL and other organisations in other areas can get to work, using the pathways and identifying the condition.
What is next? What else is needed? I am a great believer in advocacy services, and I can see their power in some excellent local examples. The Swindon Advocacy Movement has recently had more funding to extend its remit to help people with autism and Asperger’s. It is a wonderful organisation, with a one-stop shop in the centre of Swindon that gives support to adults with learning disabilities. Its motto is that it is not there permanently to do things for people, but to empower people to help themselves. With that little bit of help, support and advocacy, lives can be changed for the better, and I see that happening through its wonderful work.
We also have Discovering Autism Spectrum Happiness, a voluntary organisation set up by a group of like-minded individuals some years ago in Swindon. It is now working from the Pinetrees community centre, offering the Swindon autism information and advice service, which is an invaluable resource. It only started last year, and it has already reached out to more than 150 individuals with autism and their families. By its estimate, there might be a couple of thousand of people in the community who have not yet been identified. Through its support work and its network, it is giving advice and empowering people with autism. I had the pleasure of visiting it only two weeks ago to talk about some of the cases that it is finding and some of the cases that are coming across my desk. There is a lot going on in local communities, but there is much more that we can do on an overall strategy to identify best practice, to knit that together in a co-ordinated and coherent way and to give other commissioning bodies and other authorities a gold standard from which they can work.
The Minister knows that I am not into lowest common denominators or prescriptive measures when it comes to this sort of thing, because I believe in localism. There has to be, however, some standard to which all commissioning bodies should work. Like adults who are neurotypical, adults with autism should not be frightened or worried to move about. If they can move to another part of the country to secure employment, they should reasonably expect that autism services in their new town or city will be of a similar standard to where they have come from. When they have a family support network, the tendency is for people with autism to stay close to home, and in many cases that is not a bad thing at all. Bearing in mind the Winterbourne View example, bringing people with a disability closer to home and to their network is a good thing, but there will be many high-functioning people with autism who want to travel, want to move about and want to take that job at the other end of the country. Why can they not do that? At the moment, there is a fear that the support network that they might enjoy in Swindon would not exist in another part of the country. That is the function that the strategy could fulfil; it is an empowerment strategy, not some prescriptive “We know what is best for you, so we will tell you what to do” strategy.
On community autism awareness, I have talked somewhat about advocacy services and information, but I want to talk about the sense of isolation that many with autism and their families feel. In a survey conducted by the National Autistic Society, 82% of adults with autism said that they have days and 42% said that they have weeks when they do not talk to anybody outside their household. Just think about that for a moment. Some 72% said that they have been bullied or discriminated against. A survey by Ambitious about Autism found that 87% of parents and carers of people with autism felt unsupported by the community. Those are stark statistics, but some of the solutions are simple. Small adjustments are all that is needed to change things. In the supermarket, staff are often not trained to know how best to deal with individuals who have autism. In the hairdressers, a few sensory adjustments would allow someone with hypersensitivity to access those facilities. The cinema at Greenbridge in Swindon regularly hosts autism-friendly screenings for children and young people, which make all the difference in the world. Parents at those screenings do not need have to have eyes in the back of their heads or worry about whether their child will be seen as naughty or misbehaving. They can relax, secure in the knowledge that everybody around them is accompanying someone with autism. Such adjustments make a huge difference in the lives of not only the individuals who have autism but their carers and families.
Tim Loughton
My hon. Friend is making an important point. The large DIY chain B&Q made a virtue of employing older people and disabled people, who are sensitive to the needs of their older and physically disabled customers. As a result, more disabled or older people tend to shop there than at other DIY chains, because the staff understand them. There is a commercial advantage in training and employing staff who have greater sensitivity to, and experience of, autism and other learning disabilities.
Mr Buckland
That is a powerful point. Employing older people and disabled people is good not only for business but for employment. Doing so is not simply about being a kind employer; it is about being savvy. We have already heard about the huge potential that those with autism, Asperger’s and related conditions offer. They have qualities and gifts that we do not have, and they have incredible resources. If we only empower them, they can show us what they are capable of.
Robert Halfon
My hon. Friend is making an incredible speech. I have mentioned PACT for Autism, and the pilot apprenticeship schemes for people with autism. Given that the Government are investing so much in apprenticeships, does he agree that they should incentivise companies to hire apprentices with autism?
Mr Buckland
That is an excellent idea. As my hon. Friend knows, our hon. Friend the Member for Ilford North (Mr Scott) has pioneered a wonderful scheme in his area whereby employers are matched up to young people with autism in order to offer them apprenticeships and job opportunities. I commend that local initiative to my hon. Friend the Minister as a great example of what can be done to empower young people and adults with autism.
I have talked about local cinemas and hairdressers, but what about training bus drivers to be aware of the needs of passengers with autism? I am sure that bus drivers would be receptive, because such training would make their life much easier. A lot of useful measures, such as the provision of quiet spaces in shops, can be done very easily. As my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) said, they will open up business to new opportunities.
I draw a parallel with some of the excellent work that has been done on dementia awareness. The co-ordinated dementia-friendly communities programme has been supported by the Government since 2012, and the Prime Minister has commended it. In dementia-friendly communities, local people come together to decide how to include people with dementia. Transport providers, charities, schools and local authorities all open up their facilities to ensure that people with dementia and their carers—let us not forget them—are not discriminated against. Only two weeks ago, I opened a memory café in the Wyvern theatre in Swindon, where people with dementia and their carers can come on Thursdays to have some space, enjoy mainstream activities and feel part of life.
There is an important parallel to be drawn with autism. How are we going to achieve similar improvements for those with autism? Not only must environments be made easy to navigate, but businesses and services must be respectful and responsible; public and private service providers must receive better training; there should be volunteer-led public education in workplaces and schools; and we must work with venues to help them adapt their buildings. Things such as better signage, more information and befriending schemes are also important. All that has been done with dementia, and we must do the same with autism.
The National Autistic Society gave me an example from a blog of a mother who loves musicals but has not been able to go to see a show for some years because her four-year-old son has autism with hypersensitive hearing. Believe me, I know what that is all about. Last year, she bought tickets for an autism-friendly performance of “The Lion King” in London’s west end. The organisers provided accessible information about the venue to ensure that children with autism would not be overwhelmed on the day. When mother and son went to the theatre, they found that there was a relaxation area where parents could go. At the beginning of the performance, one of the actors came on stage to help children understand the difference between actors and characters in the play. That performance brought families together and beat isolation.
That example relates to children, but there is no reason on earth why we cannot do the same for adults. For a few hours, children and family members were able simply to be themselves. That is the point I made about the Greenbridge cinema experience, which has been invaluable for so many families. Parents are not judged and they do not need to have eyes in the back of their heads. They are accepted and they do not need to apologise for their children or the person for whom they are caring. That is priceless, and I cannot describe how important it is for families of people with autism.
I have to contrast that with my experience some years ago at the Riverside theatre, where we went to see the musical “Salad Days”. As those of us who know and love it will be aware, it is all about a piano that makes people dance. Well, my daughter decided to dance. I thought that that was wonderful, but some in the audience, who did not really understand, did not, so that was the end of that. We really need to move away from such experiences. That has lived with me as a very bad experience for the family, and I hope that I never have to go through that again. I hope that one day we will no longer have to put up with the sort of phrases that I have encountered, or the lack of thought that people often show for those for whom we care.
I hope that the revised and re-published autism strategy will acknowledge what ordinary people and ordinary businesses can do better to make our communities autism friendly. My experience of talking to and e-mailing with many families across the country who are affected by autism indicates that there is a will for change. The right framework and the right resources from central Government could help us make the step change in society’s attitudes towards autism that we have championed, and on which we want to see real action.
Mr Jamie Reed (Copeland) (Lab)
It is a pleasure to serve under your chairmanship, Ms Clark. I will be fairly brief, after an excellent debate. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this important and timely debate. Her close links with this important issue were demonstrated emphatically by her bringing forward the Autism Act 2009, and her work on that legislation should be commended. It is worth mentioning that the 2009 Act is the country’s only piece of disability-specific legislation, and the fact that it reached the statute book is a credit to not only the right hon. Lady but the hard work of Members from all parts of the House.
In preparation for the debate, I have immersed myself in the Official Report of the Autism Bill’s passage through this place. Although there were some disagreements, for the most part the debate was incredibly consensual, and the tone of today’s debate has been similar. The legislation has achieved a great deal, and I pay tribute to all Members who were involved. I have often said, particularly in Westminster Hall debates, that Parliament is at its best when we can put partisanship aside to achieve shared goals. The 2009 Act is a clear example of that. It is an Act of Parliament of which all Members, especially the right hon. Lady, can be proud.
Section 1 of the 2009 Act placed a duty on the Secretary of State to prepare and publish an autism strategy, which had to include a plan for meeting the needs of adults in England with autism, and a plan for improving the provision of appropriate services by local authorities and the national health service. My right hon. Friend the Member for Leigh (Andy Burnham), then Secretary of State for Health, published a strategy on 2 March 2010 called “Fulfilling and rewarding lives: The strategy for adults with autism in England”. That joined up all aspects of Government, with no fewer than seven Government Departments contributing, ranging from the Department of Health through to the Department for Communities and Local Government and the Ministry of Justice.
As colleagues have mentioned, the strategy heralded a new approach across Government, transforming the way that public services supported adults with autism, as well as illustrating what Whitehall can achieve when departmental silo thinking is rightly jettisoned. Despite some meaningful progress since it was published in 2010, there is clearly much work to be done. A report by the National Autistic Society revealed that 92% of adults with autism said that they needed some degree of support, yet 70% said that they were not receiving the support they needed. That meant that almost eight in every 10 people who were not receiving support were forced to rely on their parents.
In his foreword to the 2010 strategy, my right hon. Friend the then Secretary of State for Health remarked that
“Autism is sometimes described as a ‘hidden disability’, not only because it has no physical signs, but also because adults with autism are some of the most excluded, and least visible, people in the UK.”
The testimony we have heard this morning underlines that reality. My right hon. Friend also stated that people with autism have been falling through the cracks between different organisations. The 2010 strategy has done much to identify those adults who need support, and improvements are being made, but it is clear that the new autism strategy must look to build on that progress.
Since the 2009 Act and the strategy in 2010, there has been considerable change. Sadly, that has not been consistent throughout the country, and many adults are still not receiving the care or support that they need. Levels of change, and action on necessary improvements, have not yet been sufficient; I do not think that there is any disagreement on that. The forthcoming updated strategy is an opportunity for the Government to maintain national leadership on implementation, and to guide local authorities to enact effective changes and improve services.
It is clear that the identification of those with autism is essential to the success of any strategy, and, to that end, it is right that those in public services are given the tools and knowledge that they need to identify people who may need support. That could mean GPs, other health care workers, police officers, teachers, bus drivers—as we have heard mentioned—or MPs. As a Member of Parliament, I see more and more people in my surgeries who either present at some point on the autistic spectrum or have family members or friends who do.
Although the strategy refers specifically to adults, one key way to ensure that adults are given the support they need is to ensure that they are given the support they need as children. The classroom offers a lot of contact between teachers and pupils, and that relationship is extremely important. Properly trained teachers could identify the needs of children earlier, meaning that proper support systems can be put in place as a child reaches adulthood. That is so important—it is vital.
As a parent, I see my children’s primary school making real headway in that regard, but provision in secondary education appears insufficient. I fear that secondary schools in particular too often miss an opportunity with regard to pupils with autism, and that is a great shame. I hope that the Minister will attempt to allay that fear, particularly given the advent of changes in our education system—free schools and more—that have accelerated the use of non-qualified teachers. Will he tell us how the needs of autistic pupils are being safeguarded in the new educational landscape?
As I bring my remarks to a close, I want once again to pay tribute to the right hon. Member for Chesham and Amersham for securing this debate, and for all her work on this issue over many years. I also pay tribute to all the Members who have contributed to this excellent debate. I hope that the Minister can shed some light on the few issues I have raised. We are striving for the same ends, and there is a remarkable crossover in the means by which we want to achieve them. We have the opportunity for a strong political consensus on this issue, and it is one that I sincerely hope we do not waste.
The Minister of State, Department of Health (Norman Lamb)
I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate, but more particularly on her brilliant work over the years to secure the 2009 Act and the strategy that followed it. I know from my ministerial role that she continues to show an interest and pursue the case for change, and that is incredibly valuable.
Ministers are normally under pressure to respond to requests for meetings, but although I have not had one today, I would like to offer my right hon. Friend the chance to come to the Department, before we reach the final point of the refreshed, revised strategy, to discuss where we are going with it. My hon. Friend the Member for South Swindon (Mr Buckland) spoke passionately as well. I was with him yesterday at a meeting of his all-party group on autism, and he should be part of the discussion. Other Members are welcome too—that would be very valuable.
Norman Lamb
I will give way to both colleagues, but first to my right hon. Friend the Member for Chesham and Amersham.
Mrs Gillan
I thank the Minister for his generous offer. He took the thought out of my head, because I was going to ask whether my hon. Friend the Member for South Swindon (Mr Buckland) could accompany me, alongside someone from the National Autistic Society. That offer will be taken up, and communities across the country will appreciate that. Even if the Minister is unable to meet all the demands we have set out today, it is important that he can set out a path forward, so that we can achieve what we have been asking for across the board, so I thank him for his offer.
Norman Lamb
I thank my right hon. Friend for accepting my offer, and now give way to my hon. Friend the Member for South Swindon.
Mr Buckland
I am grateful to the Minister. I will not take up his valuable time, but I want to thank him for the meeting he had on the strategy the other day with me and my hon. Friends the Members for Salisbury (John Glen), and for Cambridge (Dr Huppert). We have already started the work here in Westminster, and I am very grateful to the Minister for agreeing to a further meeting with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) to push the agenda forward.
Norman Lamb
I acknowledge my hon. Friend’s comments. I share the shadow Minister’s view that this issue is entirely bipartisan. There is a massive need to change and increase society’s understanding of autism. Awful things so often happen through ignorance of autism and the entire spectrum. It is crucial to raise awareness, as several Members have said.
My right hon. Friend the Member for Chesham and Amersham raised a number of queries about whether the revised strategy would reinforce the points from the original strategy, and I can confirm that it will do so on all the points she mentioned. It must also go further and look into other areas.
My hon. Friend the Member for South Swindon talked a lot about the criminal justice system, and we must look at how we can improve things there. He made the point that someone with Asperger’s is seven times more likely to end up having some contact with the criminal justice system. We have started to roll out the Government’s liaison and diversion service, which I announced back in January. By 2017, we aim to have a nationwide service for people with mental health problems, autism and learning disabilities who end up in the criminal justice system, often inappropriately and unnecessarily. Getting people diverted to diagnosis, which Members have talked about, and to the right treatment can often prevent further offending and potentially thereby transform someone’s life while protecting others.
Mr Buckland
I pay tribute to the Minister for the mental health pilot schemes that are being introduced in Wiltshire and other places; they were recommended by the Bradley review some time ago. Does he agree that community psychiatric nurses need training, particularly in cases of comorbid autism and mental health conditions, which are sadly quite common? We must ensure that the pilot covers autism when it comes to the diversion at the police station.
Norman Lamb
I absolutely agree with my hon. Friend. I wanted also to touch on the point made by my hon. Friend the Member for South West Bedfordshire (Andrew Selous) about the parents of adults with autism who, far too often, are told by clinicians that they cannot talk to them about their adult child’s circumstances. Clinicians often hide behind the absolute importance of confidentiality about a condition in order to refuse to talk at all to the parents—the people who know the individual better than anyone. That is an attitude of mind among too many clinicians. It has to change.
I also wanted to refer to the points made by my hon. Friend the Member for Strangford (Jim Shannon). I think I can call him my hon. Friend. [Hon. Members: “Hear, hear!”] Thank you for that. He talked about the pressure on families, and he is absolutely right. Whether one is talking about learning disability, autism or dementia—there are parallels with dementia—the need to raise awareness in society is real. I am also happy to look at the Northern Ireland legislation and at what lessons can be learned throughout the jurisdictions.
Another point in response to the debate was to do with transition. Whether with mental health, learning disability or autism, we so often find that disasters happen at the age of 18. My hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) alluded to that important point. Too often, people are lost to the system. The age of 18 is the worst possible age to withdraw support, whether we are talking about mental health in general or autism in particular.
Robert Halfon
I thank my hon. Friend the Minister for giving way. I gave the figure of 85% of people with autism not having full-time employment, and I mentioned the apprenticeship for autism started by my charity, PACT for Autism. Will the Government’s apprenticeship ambassador, my hon. Friend the Member for Harrogate and Knaresborough (Andrew Jones), who is present, work with the Minister with responsibility for apprenticeships to look at introducing such a scheme and rolling it out across the country?
Norman Lamb
My hon. Friend beat me to it, because I was about to refer to his comments on apprenticeships. I am interested in that. I am proud of what the Government have done on apprenticeships in general, but their use for people with autism is an interesting area. I noted the points he made about the scheme in his local area, and I am happy to consider it further.
Mr Burrowes
On incentivising employers and leading by example, the Government, in the NHS, are among the biggest employers around and will no doubt want to be an autism-friendly organisation and employer. Does the Minister have any information about how autism-friendly the NHS is in employing people with autism? Will he look into how the NHS can take a lead by doing that?
Norman Lamb
I absolutely agree that the NHS ought to be an exemplar employer. I suspect that the truth is that it is variable, with areas of good practice, but we do not know enough about the position throughout the NHS. The message should go out from this debate that the NHS has an obligation to lead by example and to demonstrate what can be done. Several hon. Members made the point that employing someone with autism might be quite challenging to start with, but the potential that that individual can offer is often enormous. An organisation could end up with a loyal employee who can contribute massively. The NHS needs to demonstrate that by leading from the front.
Everyone with autism should be
“able to live fulfilling and rewarding lives within a society that accepts and understands them.”
That was at the heart of the “Fulfilling and rewarding lives” strategy, and I stand firmly behind it. Furthermore, the work of the National Autistic Society’s “Push for Action” campaign has been hugely valuable in helping the Government to focus on the issues that need to be considered. I pay tribute to the society for inspired leadership. Other organisations have worked with us as well, including the Autism Alliance, Autism Plus and Ambitious about Autism, and I pay tribute to the work of all those organisations.
During our review, we ran a comprehensive exercise to listen and learn how the strategy is working. Nearly 2,000 people, including some on the autism spectrum and some who are involved in planning, commissioning and providing services, took part in focus groups, events and conferences, and more than 1,100 people with autism took part in an online survey. Local authorities worked with their partners and local people to complete a self-evaluation exercise on their progress. All this information, including individual returns, will be made available by Public Health England when the update of the strategy is published. As well as cross-departmental discussions, there has been contact with the different parts of the United Kingdom to discuss all four strategies, including that of Northern Ireland, to find common ground and to improve standards across the board.
Foundations for change have been laid and people with autism have increasingly been engaged locally in planning and designing services. Clear national guidance has been issued on the care, management and diagnosis of autism. We have heard about some great experiences that people have had in further education or with particular employers. My hon. Friend the Member for East Worthing and Shoreham made a good point about the need for employers to take the lead and to demonstrate best practice.
In some areas, there are great local autism teams and excellent diagnostic services. I noted what my right hon. Friend the Member for Chesham and Amersham said about her area and the GP who was taking the lead in that county to commission services. That is exactly what needs to be happening everywhere. I also heard of some great services being provided in Swindon, so there are some good things happening, but it was only five years or so ago that low levels of awareness and a lack of services were what led to the Autism Act, back in 2009. There are some real successes, but there is also much more to do to see the foundations translated into a greater difference to peoples’ lives.
When I have talked to people with autism and to families at events that have taken place during the review, I was struck by how variable the position is. In some areas, very little has happened. We now have the legislation in a good place and a good strategy, which is being updated, but translating that into a difference to people’s lives is where an enormous amount of work still needs to be done.
Mr Jamie Reed
When the Minister comes to publish the refresh of the strategy, will any care be given—as it should, in my view—to the understanding of NHS front-line staff, in particular in emergency medicine, and their identifying patients with autism? I have a series of examples from my constituency of people with autism accessing emergency services, receiving suboptimal care and getting into some pretty dangerous situations.
Norman Lamb
The hon. Gentleman makes a good point. I was going to come on to give an example of that. Sadly, we have also heard from many people with autism, and their families and carers, that things have not yet changed enough, or at all, for them. Gaps in provision or waits for diagnostic services continue to be reported. As my hon. Friend the Member for South Swindon made clear, diagnosis is the start of what can then happen; it is a condition precedent to an improvement in someone’s life, and is of course not enough in itself. Many people have told us that they have skills to offer employers that they cannot use. That is totally frustrating for them, and a waste for the individual and for the economy, as my right hon. Friend the Member for Chesham and Amersham made clear.
Mrs Gillan
The Minister has slightly moved on from the point that I wanted to make, but I will make it nevertheless. Will he also look at an initiative that the NAS and I took in my constituency with some parents of children who have autism? I brought them together with the clinical commissioning group in a non-crisis atmosphere, because most of the contact with parents and families with autism happens when they are in crisis. We held a meeting in my office in a non-crisis environment and it was helpful to have an exchange in a calm atmosphere about the issues and problems faced by those individuals and families. They were able to put those across to the CCG and the local authority, which meant that the professionals were then so much better equipped to know what such families and individuals are facing, and to give them the help and assistance that they require. Will the Minister also look at that as a model to roll out across the country?
Norman Lamb
I would. Bringing people with autism and people who use services together with those who are commissioning the services is a necessary condition for any good commissioning, but far too often it does not happen. As my right hon. Friend has demonstrated, there is a role for us here: we can act as local champions to bring people together and put pressure on institutions to change attitudes. I very much share that view.
We are in the final period of finalising the update to the strategy and are giving active consideration to ideas that others have contributed, such as the innovation fund, which my right hon. Friend mentioned, to help develop good practice, and an autism awareness scheme to help local volunteers and community groups. Autism should not be seen as an add-on to services or work programmes, and with well over half a million people on the autism spectrum, everyday services will already be seeing or in contact with many people who have autism. Thinking about and engaging with those people more effectively and making reasonable adjustments or adaptations to existing services will lead to better outcomes for people and a better use of public resources, as other hon. Members have said.
Monday was NHS change day. I was made aware, via Twitter, of a short video about a doctor’s pledge to ensure that instructions given to patients are clear and not ambiguous. The video followed a girl called Lucy who has autism. After a consultation in a room in a hospital, she was told to wait outside A and E, and so went outside the building, because she had taken the instruction literally, and sat waiting for hours outside in the cold in the car park, left entirely on her own. I encourage hon. Members to watch it: it lasts about 30 seconds and was distributed via Twitter. That simple and straightforward pledge, made by a doctor who recognised that there had been a complete failure by his service, will help to raise awareness within the service and increase understanding of autism. The hon. Member for Stretford and Urmston (Kate Green) made the point that this is not just a matter for the NHS; other organisations such as banks and other financial institutions have a responsibility to see how they need to raise awareness among their staff.
Many of the changes under way in public services, such as increased personalisation and choice for individuals, are essential to giving people with autism the right kind of support. Support for people with autism may not require huge budgets to achieve improvements, and much can be achieved with a degree of creativity, flexibility and determination.
This issue is relevant not only to health and care, however. Again, we can draw a comparison with the dementia situation. The Prime Minister’s challenge on dementia is about how not only health and care services but society need to change, and how we need to raise awareness across society. The same applies for people on the autism spectrum. It is about changing people’s lives, both where they live and where they work. We know that so much more could be done to promote autism awareness, but our society is becoming more aware of autism. We hear about local schemes to make parts of the community more accessible and welcoming to people with autism. For example, as was referred to earlier, cinema screenings are being made autism-friendly by simple adjustments such as having the lights on low and the volume turned down.
Services based around low-level interpersonal support, such as buddying schemes, have enabled adults with autism—including people who do not qualify for support from their local authorities—to participate in different social and leisure activities and have promoted social inclusion. The example of the special showing of a musical in London is a good demonstration of an organisation prepared to go the extra mile to make life enjoyable for people in those circumstances. Exactly the same can be done for adults as for children, as my hon. Friend the Member for South Swindon said.
The Care Bill also puts a duty on local authorities to develop preventive services for people within communities. The shadow Minister and I have been devoting a lot of our time to the Care Bill. It is great and groundbreaking legislation that puts a focus on individuals’ well-being and happiness. If we can change the way in which organisations such as local authorities behave towards people with care and support needs, so as to focus on their well-being and not the needs of the institution, we can effect real change.
The Children and Families Bill will bring significant improvements to the transition of young people with autism from school, through college and into adult life—a point made by the shadow Minister. It will introduce education, health and care plans for people from nought to 25, which will put greater emphasis on long-term outcomes for young people. We know that caring for someone with autism can be extremely rewarding, but it can also be incredibly challenging, both emotionally and financially. The changes to carers’ assessments that will be introduced if the Care Bill becomes law will ensure that many more carers can get support.
It is also important to improve training on autism for front-line public service staff, a point raised several times in our debate. Since 2010 we have worked with a range of organisations to produce a comprehensive set of resources for staff in the health and care sector. Health Education England has a role to play, along with initiatives from the royal colleges, such as the Royal College of General Practitioners, whose adoption of autism as a clinical priority from April this year is very much to be welcomed. The regulations to support the Care Bill will also require community care assessors to be suitably trained—again, an issue raised in our debate. Having autism-aware police officers, courts and probation services can make a great difference. The existing statutory guidance made it clear that autism training should be available to all staff working in health and social care.
To plan effectively, local authorities need access to data on numbers and needs that are as comprehensive as possible. From April this year, as an outcome of the zero-based review of adult social care data, they will have to record a person’s primary reason for support and any health conditions that person may have, including autism. That provides a basis for possible future measures on autism in the adult social care outcomes framework.
A key challenge for many older adults with autism is that they will have had significant support from their families, but as families age that becomes less possible. We are considering how to build on the recent NAS report that followed work by the House of Lords autism and ageing commission.
As we have heard, most people with autism want to work, and have skills and talents that would be incredibly useful in the workplace. The policy paper “The disability and health employment strategy: the discussion so far” outlines a more personalised and tailored approach to employment support for disabled people, including people with autism. As well as challenging negative behaviours and attitudes, the Disability Confident campaign launched last year by the Prime Minister is designed to help employers who are unsure about the benefits of employing disabled people.
Adults with autism are entitled to benefit from all the Government’s wider initiatives to get working-age people into employment. The Department for Work and Pensions is aware that more can be done to help people with autism make the most of those programmes and of themselves. Only this week, the DWP held an event with my Department and the NAS, for people on the spectrum and for employers, to improve people’s experiences in applying for jobs at the jobcentre and with employers.
We are only at the beginning of the journey to improve all aspects of the lives of people with autism, including when they are seeking employment or are in education, as well as the support they get in health and social care. We need to continue with concerted action and commitment both nationally and locally to make a difference. The update of the 2010 strategy will mark the next step in that journey, but there is still a long way to go.