Services for People with Autism

Huw Merriman Excerpts
Thursday 21st March 2019

(5 years ago)

Commons Chamber
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Huw Merriman Portrait Huw Merriman (Bexhill and Battle) (Con)
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I beg to move,

That this House has considered services for people with autism.

Every year, my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), in her role as chair of the all-party parliamentary group on autism, moves a motion along the lines:

“That this House notes that World Autism Awareness Week runs from 1 April to 7 April; observes that autistic people continue to face a number of barriers to full participation in society; notes that it is 10 years since the Autism Act became law; and calls on the Government to improve support for children and adults on the autism spectrum, and ensure that the Autism Act is fully implemented across the country.”

My right hon. Friend cannot be with us today. She has asked me to explain that a close family member is critically ill and that she cannot leave their side. Though you, Mr Deputy Speaker, I send the love of this House to our right hon. Friend. She is a formidable champion of this cause, and someone to whom many of us have turned in our own hour of need. The best tribute that I can pay to her is to deliver the speech that she prepared and would have made today. These are her words:

“I welcome the Minister to the Front Bench and look forward to hearing what she has to say. My thanks to the Backbench Business Committee for granting this debate as we look forward to World Autism Awareness Week, a full seven days when people across the UK take part in activities to raise awareness of autism. I also thank the National Autistic Society for its ongoing support for the all-party parliamentary group on autism.

Hon. Members will be aware of my long-standing commitment to improving the lives of people on the autism spectrum, most notably through my role in spearheading the introduction of the Autism Act 2009—which has now been on the statute book for 10 years.

I was proud to introduce that Bill that became the only Act—which is the only Act dedicated to improving support and services for one disability. It was a landmark in the battle to improve the lives of autistic adults and their families. As a result of the Act, there has been a fundamental shift in how policy is developed and delivered for adults on the autism spectrum. For the first time, legal duties were placed on councils and the NHS to provide support to autistic adults in their local areas. In addition, the Act placed a responsibility on the Government to produce the national autism strategy, to set out its vision—and, importantly, to keep that strategy under review.”

Andrew Selous Portrait Andrew Selous (South West Bedfordshire) (Con)
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Like my hon. Friend I pay huge tribute to our right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) and all that she has done on the issue for so long. I am listening carefully to my hon. Friend’s excellent speech, and I wonder what he would say to a constituent who wrote to me about her son. She writes:

“My son is 21 years old and since leaving education has had nothing to do. He is not disabled enough to qualify for benefits but he is not able to compete for a job. He is caught in the middle.”

What more does my hon. Friend think we can do to help people like that young man with their future?

Huw Merriman Portrait Huw Merriman
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I thank my hon. Friend for his words and for championing his constituents. As he rightly says, some autistic people tend to fall through the gaps. Of course, all local authorities have a responsibility to take note when it comes to autism. We see individuals who are on the autism spectrum but are not receiving help because they might be outside a defined period. The extension of plans up to the age of 25 will go some way towards addressing that, but we still see people falling through the gaps. I will touch on some of the other areas that might address his concerns, or I will at least make calls to those on the Front Bench.

My right hon. Friend the Member for Chesham and Amersham continues:

“This year, it falls on the Government once again to review its strategy and identify what more needs to be done.

Each of us has about 1,000 people on the autism spectrum in our constituencies and it affects one in 100 people. We each will have many autistic people and their family members contacting us to ask for our help on areas from education to adult support, diagnosis to employment...”

Derek Twigg Portrait Derek Twigg (Halton) (Lab)
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The excellent speech mentioned the Government’s strategy. A perennial problem—it crops up all the time in my constituency—is the speed of diagnosis. The fact is that so many children with autism simply do not get an education. Surely the strategy must try to address that in a much better way than it has in the past.

Huw Merriman Portrait Huw Merriman
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The hon. Gentleman is absolutely right. Time and again we see that young people have to fail before they can be given the support they need. There are many examples of young people clearly failing when they go to a pre-school, but then they still have to move on to a mainstream school, where they will fail, before they can be given support. It should be blindingly obvious, and councils should look at those plans before children have to start primary school. Often councils say that they are not required to do that, but perhaps they do not know what their obligations really are.

Seema Malhotra Portrait Seema Malhotra (Feltham and Heston) (Lab/Co-op)
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The hon. Gentleman is indeed making an excellent speech. He also referred to parents. What is his view of the extent to which the needs of parents and family members should also be part of the strategy, not least because sometimes they do not understand the experience of their children and how best they can help? Family members also needs respite provision, for example, because of the demands of caring for children with autism. We should also recognise the amazing work that many specialist schools are doing to ensure that children with autism, who also have amazing talents, can express and develop their abilities.

Huw Merriman Portrait Huw Merriman
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The hon. Lady is absolutely right. A couple of years ago I was very proud to co-author the “Autism and education” report, which she also worked on. It showed many worrying statistics. For example, one in two teachers just did not have the confidence to teach autistic children. Unsurprisingly, 50% of autistic children had a miserable time at school and were not looked at.

The hon. Lady is right to give credit to the parents, who are on an incredible journey and are struggling themselves. Battling for the support that they need at the same time as providing care is emotionally draining. We all work with those parents, and we have so much respect for them.

Martin Whitfield Portrait Martin Whitfield (East Lothian) (Lab)
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I congratulate the hon. Gentleman on securing the debate. I also congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) on all the work that she has done on this issue.

The hon. Gentleman is making some important points, but does he share my annoyance about the fact that, unfortunately, autism seems to be one of those invisible disabilities? Many parents talk about the way in which others judge their children, saying that they are just being naughty. That failure of understanding goes to the heart of the problem faced by autistic children and adults, whose contribution to our communities is enormous, individual and highly important. We should be able to open our eyes to all the strengths that they bring to us, and make a space in which they can be understood through the services that the hon. Gentleman is talking about.

Huw Merriman Portrait Huw Merriman
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The hon. Gentleman has put it beautifully. As he probably knows, a recent survey showed that 50% of autistic individuals and families were scared to go out, and did not go out, because they were worried about how they would be judged. That isolation is a huge challenge for us.

Huw Merriman Portrait Huw Merriman
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I will take two more brief interventions, and then I will make some progress.

Wera Hobhouse Portrait Wera Hobhouse
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I am pleased that the debate is taking place in the main Chamber. We had a very moving debate some months ago in Westminster Hall, but this is such an important issue that it needed to be raised here. Unfortunately I shall have to leave soon. The debate was meant to start about an hour ago, according to my diary. I am so sorry not to be able to stay, but I am so pleased that the hon. Gentleman is raising the issue now.

Wera Hobhouse Portrait Wera Hobhouse
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In that case, Mr Deputy Speaker, I apologise.

My local authorities have some excellent care providers and support services, including Parent Carers Voice. Does the hon. Gentleman agree that services for children with autism should be financed through council budgets rather than the responsibility being pushed on to struggling families?

Huw Merriman Portrait Huw Merriman
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I think that we all face a real challenge. At a time when local authorities are themselves having to watch their budgets, it is the altruistic services—the support services—that tend to go. The challenge I face is that as authorities look just at their statutory obligations, they may end up spending more money to deliver those than they spent on some of the support services beforehand. I have every sympathy with the point that the hon. Lady has made.

David Drew Portrait Dr Drew
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May I pay my own tribute to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan)? The hon. Gentleman is doing a very good job of reading her speech.

What parents find most frustrating are instances in which a care plan has been agreed and is in place, and the local authority then tries to renegotiate downwards the sum that has been agreed. That causes problems for the parents and, obviously, for the person with autism, but is also causes problems for, in particular, specialist units. Does the hon. Gentleman agree that that is unfair, and the wrong way to go about dealing with this whole problem?

Huw Merriman Portrait Huw Merriman
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I certainly do. The challenge is to ensure that care plans are flexible enough to be built on, while also including an element of prescription so that there is a proper guide. What must not happen is plans being effectively reneged on when care and support are still needed. The hon. Gentleman made his point very forcefully. He also said that I was doing a good job reading the speech; I will carry on doing my best.

I was talking about the impact on services, as my right hon. Friend the Member for Chesham and Amersham puts it,

“from education to adult support, from diagnosis to employment, transition to transport. We know the many ways that an autistic person may turn to the state—and to us—for support, and how vital it is to make sure it is there to meet their needs.

The last national strategy ‘Think Autism’ in 2014 included wide-ranging actions. This was underpinned with revised statutory guidance, setting out clear duties on councils and the NHS to deliver on these actions—but we know that many local areas are not meeting all of their obligations. There are also questions about whether the Act goes far enough. As we reach the 10th anniversary of the Act, now is an appropriate time to ask these questions.

The All Party Parliamentary Group on Autism, which I am proud to chair, is spending this year doing just that. We are holding an inquiry into what has worked, what happens now and, most importantly, what needs to change. We are looking very broadly, to reflect the needs of autistic people,”

including in health and mental health; children, education and transition; employment; access to justice; adult support; and public understanding.

Kevin Brennan Portrait Kevin Brennan (Cardiff West) (Lab)
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I welcome the APPG’s inquiry, and, in particular, the fact that it will look into the way in which adults with autism interact with the criminal justice system. I think that is an area in which the work of the Act could be extended. I pay tribute to the families who set up an organisation called Autism Injustice, and recommend its website, autisminjustice.org, to other Members and to people watching our debate who are interested in that interaction between autism and the criminal justice system.

Huw Merriman Portrait Huw Merriman
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The hon. Gentleman has referred to adults, but I remember going on a trip with the APPG to a young offenders institution that had tried to establish a wing that was autistic-friendly, and hoped to roll it out across the estate. He is right: a big cohort of the prison population are on the spectrum, and face particular challenges that need to be looked at.

Bambos Charalambous Portrait Bambos Charalambous (Enfield, Southgate) (Lab)
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Will the hon. Gentleman give way?

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Huw Merriman Portrait Huw Merriman
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I will give way one more time, but I really should make some progress.

Bambos Charalambous Portrait Bambos Charalambous
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The hon. Gentleman mentioned the issue of employment, which is vastly overlooked. Many employers do not know what adjustments they should make to become more autism-friendly, and people with autism are deprived of work as a result. Will the inquiry be looking at that issue?

Huw Merriman Portrait Huw Merriman
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A few years ago, Ambitious about Autism produced a big report looking looked at that specifically. I am fortunate to have in my constituency an organisation called Little Gate Farm, which takes people who have finished their education and makes them work-ready. However, it requires employers to give them a chance, and I am always writing to employers urging them to do so.

Let me give some examples. One young lad was obsessed with washing cars. We matched him up with a garage, and that is exactly what he does. Someone else was given a job in a bookkeeping firm. The big challenge there is ensuring that that young person takes time off, because they have become so used to the routine. The initiative has become so successful that people are throwing themselves into work. We must do all that we can, as Members of Parliament, to pair and support people.

My right hon. Friend the Member for Chesham and Amersham says that we in the APPG

“will hold the Government’s feet to the fire to see those recommendations reflected in the new strategy.

Our need to act is clear. Too many people”—

as we have just discussed—

“still have to wait too long for a diagnosis—more than three years in some parts of the country. Getting a diagnosis can be a crucial milestone, helping to unlock vital support. Delays in being diagnosed can result in people developing more significant needs, or mental health problems.

National guidance from the health watchdog NICE state clearly that children or adults suspected of being on the autism spectrum should start their diagnostic assessment within three months of being referred to their local autism team. But we know there is a postcode lottery in waiting times for appointments, with many parts of the country falling far short of the three-month target. Alongside the National Autistic Society, we have been pushing progress on this issue in this very chamber for several years. Valuable research”—

carried out by the right hon. Member for North Norfolk (Norman Lamb)—

“on behalf of the APPGA shone a further spotlight on these long waits and called for a mandatory minimum waiting time standard. I am pleased to have him on board again leading our inquiry on health and mental health, which heard evidence last week.

We also know that autistic people too often don’t get the physical and mental health care they need. They face high levels of health inequality, and evidence suggests that people may die early as a result, which has been highlighted by Autistica. It’s vital that all health and care staff receive autism training to ensure that our health service meets their needs and makes the changes and adjustments that it needs to—a key part of the Autism Act. I welcome the Government’s current proposals on mandatory training in autism and learning disability to all health and care staff following the dogged campaigning of Paula McGowan, a mother who tragically lost her son Oliver. It’s vital that this proposal is taken forward and that its impact is monitored. I hope the Minister will devote some time to make sure that this programme makes a difference.

I also welcome the inclusion of autism, alongside learning disability, as one of the four clinical priorities in the NHS 10-year plan to improve health services. This is a great step towards ensuring that the NHS supports autistic people as well as it supports everyone else. It sets out actions to reduce children’s diagnosis waiting times, reduce the number of autistic people inappropriately under section in mental health hospitals, and making sure that reasonable adjustments are put in place. But we need more details on how these, and other commitments in the Plan will be delivered (and how they will be funded). I would appreciate if the Minister could update the House on when we can expect to see this much-needed detail.

I am pleased to see the Government already thinking ambitiously about the future of the strategy. I warmly welcome the Government’s commitment to extending the autism strategy to include children and young people, as well as adults, for the first time.”

Philip Dunne Portrait Mr Philip Dunne (Ludlow) (Con)
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My hon. Friend is making an exceptionally powerful speech, and I applaud his role as chairman of the all-party group. It is particularly impressive that he has been able to pick up the role in this debate of my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) in her absence.

Returning to the question of education, my hon. Friend touched on the subject of young people a moment ago. Does he agree that the Government’s recent announcement of an additional 37 schools across the country to provide special needs support for people, including those on the autistic spectrum, is a welcome recognition of the challenges presented to our education system by the increasing prevalence, regrettably, of autism across our communities?

I would like to highlight one story in my constituency that points out the need for such schools. It involves a mother of two autistic children, both of whom have to be schooled over 100 miles away from Ludlow, in the heart of my constituency, where she lives. She has campaigned with a local charity and not-for-profit group to open a new school—Overton school, just outside Ludlow, which is currently awaiting its Ofsted accreditation—partly so that other families who have to deal with the same circumstances will not have to travel 100 miles to visit their children.

Huw Merriman Portrait Huw Merriman
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My right hon. Friend is absolutely right, and I know how much he campaigns to deliver the solution he talks about because I am fortunate enough to share an office with him. He is a great champion of his constituents, and it is welcome news that more schools will be funded. The Minister will have heard his powerful pitch for his constituency. I can also reassure all Members that I am only temporarily sitting in for my right hon. Friend the Member for Chesham and Amersham; she will continue to be the chairman of the all-party group. I will now make progress, as I know others wish to speak.

My right hon. Friend the Member for Chesham and Amersham continues:

“For many families of autistic children, securing the right support for their child at school is a very difficult task—much harder than it should be. I am sure we have all been contacted by constituents who are struggling to get the school provision and support their autistic children need—this may be a place at a specialist school, or support to enable them to thrive and make progress in a mainstream school…

There’s one other very important issue that I want to draw to the attention of the House and the Minister. That is the continued inclusion of autism in the Mental Health Act as a mental disorder.

What this means is that autistic people and those with a learning disability—particularly those who have behaviour that is described as ‘challenging’—can be detained under the Act when they do not have a treatable mental illness. When this is twinned with a lack of appropriate support, particularly crisis support, to prevent someone being admitted to hospital, we see the numbers of autistic people in these hospitals increase.”

I would like the Government to address that challenge and issue.

I will conclude—I have failed to deliver my right hon. Friend’s entire speech, but she will be delighted that we have had a debate about this and raised awareness, so I finish on the following note. She says:

“Autistic people—children and adults—need the right support, at the right time, in their local communities. The wider community needs to have a much better understanding of what autism is and how it affects people. There are things that all of us can do to make our society a more inclusive place for everyone—in World Autism Awareness Week and beyond”,

that should be our goal.

None Portrait Several hon. Members rose—
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Huw Merriman Portrait Huw Merriman
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Thank you for chairing us this afternoon, Madam Deputy Speaker.

I have heard it said that Parliament is not delivering for the people. May I send a message and invite everybody here to join me in sending a message to people with autism or Asperger’s and their families? With the voices of my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), the hon. Member for Bristol West (Thangam Debbonaire), my hon. Friend the Member for North Cornwall (Scott Mann), the hon. Member for Liverpool, West Derby (Stephen Twigg), my hon. Friend the Member for Dudley South (Mike Wood), the hon. Member for Dulwich and West Norwood (Helen Hayes), my hon. Friend the Member for Berwick-upon-Tweed (Anne-Marie Trevelyan), the hon. Member for Cardiff West (Kevin Brennan), my hon. Friend the Member for Henley (John Howell), the hon. Member for Strangford (Jim Shannon), my hon. Friends the Members for Torbay (Kevin Foster) and for Copeland (Trudy Harrison), the hon. Members for Glasgow East (David Linden) and for Dewsbury (Paula Sherriff), my hon. Friend the Minister for Care—I thank the Minister for all her commitments this afternoon—and the many others who intervened, the message is that we understand the challenges autistic people have to go through every day, and we will be by your side and will do our best to make sure that you have the services you deserve.

Question put and agreed to.

Resolved,

That this House has considered services for people with autism.

Rosie Winterton Portrait Madam Deputy Speaker (Dame Rosie Winterton)
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I am sure that the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) would have been very proud of all the contributions to the debate today, and I hope that the hon. Member for Bexhill and Battle (Huw Merriman) will send her our best wishes.