Adult Autism Strategy

Cheryl Gillan Excerpts

Wednesday 5th March 2014 Westminster Hall

[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—

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[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.

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[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.

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[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.

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[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.

[Mrs Gillan]

rose—

[Mr Buckland]

rose—

[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.

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[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.