Autism

Angela Watkinson Excerpts

Tuesday 20th November 2012 Commons Chamber

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is a great pleasure to follow the hon. Member for Stalybridge and Hyde (Jonathan Reynolds), and I pay tribute to him for his speech. It is good to know that here in Parliament we do not always shout and bray at each other, but sometimes work together with a common purpose and for the common good. In the same spirit, I welcome the Under-Secretary of State for Education my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), the children’s Minister, to the Front Bench. I also welcome you to the Chair, Mr. Speaker: you have taken a great deal of personal interest in this subject, and I pay tribute to you and your work in that regard.

Let me say to my hon. Friend the Member for South Swindon (Mr Buckland) that I am delighted that this is the subject on which I am making my first speech from the Back Benches for a very long time. It is a subject close to my heart because of my Private Member’s Bill, which was a truly co-operative affair involving Members in all parts of the House. However, the debate also gives me an opportunity to pay tribute to all the families and parents who sent the hundreds of e-mails that enabled us to secure a Second Reading for the Bill, and to put on the statute book what I think was the first, and is still the only, disability-specific piece of legislation in the country.

One of the hidden heroines of that process was my great friend Baroness Browning, who did so much to further the cause. I talked to her just before the debate. She continues to raise these matters regularly in the other place, and I want the Minister to know about an issue that is challenging her particularly at the moment. She is very concerned—as, I am sure, are many Members of this House—about the assessments that are being conducted for the Government, especially those conducted by Atos. I ask the Minister to acknowledge that concern, and to ensure that people with enough experience of autism spectrum disorders are able to make the fair assessments that we all want.

That concern—along with many others that have been expressed in the two speeches that we have already heard—is reflected across the board. It is felt that there is still a great deal to be done. Research by many organisations, including the Back-Bench all-party group but also the National Autistic Society, indicates that people are still having to battle and fight to secure the right support for family members. This year the NAS celebrates 50 years of providing advice and support, and its research illustrates that ongoing battle. Nearly 50% of the parents who responded to a survey that it conducted recently said that they were still having to wait for more than a year to obtain the right support for their children, and 25% were having to wait for two years. That cannot be right in this day and age, given the knowledge of autism that we now have.

Delays in obtaining access to support can have a significant impact. Nearly 70% of those parents said that the progress of their children’s education had suffered because of the lack of timely support, and I am sure that that is echoed in the experience of some of the parents of children with autism who are in the House today. I also think that such delays always result in poorer outcomes for children and young people with autism. My hon. Friend the Member for South Swindon knows that only 15% of adults with autism are in full-time employment, but one of the statistics he gave was 1% short. In fact, the disability task group in Sheffield said 26% of graduates with autism are unemployed, and that is the highest rate for any disability group.

[Angela Watkinson (Hornchurch and Upminster) (Con)]

I know my right hon. Friend has long taken an interest in this subject, but may I recommend to her the ROSE—Realistic Opportunities for Supported Employment—project in my constituency, which transfers such students from further education colleges into employment, and provides support that is gradually withdrawn as they become more independent? That is an example of good practice which I am sure my right hon. Friend would like to see copied throughout the country.

[Mrs Gillan]

Certainly one way to maximise the potential of people with autism is to follow such examples of good practice. The all-party group might want to address these issues in the future. If we want to be hard-nosed about this subject, we could refer to a National Audit Office report published when the Autism Act 2009 was going through this House, which showed that if local services identified and supported just 4% of adults with high-functioning autism and Asperger’s syndrome, the outlay would become cost-neutral over time, and if they did the same for just 8% of such adults, that could save the Government some £67 million a year.

I worked very closely with the NAS during the passage of the Autism Bill, so I know that it strongly supports the Government’s proposed reforms to the special educational needs system. It especially welcomes the introduction of joint co-operation and commissioning duties, the extension of SEN law to cover academies and free schools, and the education, health and care plans for young people up to the age of 25, which will replace the statements.

The NAS has raised some concerns, however, and it speaks from a position of great strength. It runs seven schools for children with autism, and it is setting up an autism free school—in our area, Mr Speaker, of the Thames valley. The new NAS Anderson school in Bristol works with children to address the challenges they face, with the specific aim of helping them move back into community-based mainstream provision. The NAS knows from experience that these new schools are set up in response to great local need and are anchored in their communities. It is essential that children with complex needs can have access to such independent special schools, but I understand there is some concern that under the new system parents may not be able to express a preference for such schools in an education, health and care plan. I urge the Minister to ensure that such schools can be accessed by those who need them.

This debate has focused on the SEN reforms, but the Autism Act 2009 was borne out of a recognition that the specific needs of adults with autism were often overlooked by service designers at the local level and therefore they consistently missed out and did not get the help they needed. Unfortunately, that is reflected in recent NAS research. Some two-thirds of adults with autism are not getting the help they need.

It is vital that we get education provision right. Local authorities must ensure that they not only educate themselves, but implement the Department of Health adult autism strategy in a way that addresses local needs. In working with young people with autism and their families, local authorities must plan at the strategic level for local services and develop individually tailored plans to ensure that children with autism are supported into adulthood and can enter employment and live independently in our communities.

The adult strategy will be reviewed in 2013. That gives us an important opportunity to consider these matters. It also gives us a chance to celebrate improvements —there have been improvements—but we must not ignore the fact that there is still so much more that we need to do. I particularly urge the Minister to take on board the fact that he needs to work with his colleagues at the Department of Health and the Department for Work and Pensions, and with many others, including Members of this House, to ensure that the proposals to reform SEN are fully linked to the work on the autism strategy.

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[John McDonnell]

I welcome—everyone welcomes—the longer transition, and my hon. Friend the Member for Stalybridge and Hyde made that point. It would be useful to get it on the record that people want the specific right of the appeal that has existed since the Education Act 1981 to be endorsed in the new legislation as well. We need to give people security that that will happen, and if that is what the Minister is saying, that is incredibly helpful.

Mandatory mediation also came up in the group discussion. I have never known mandatory mediation to work in any walk of life. If people are not willing to go into mediation, it does not usually work. To have mandatory mediation that involves penalties as well is, I think, completely counter-productive, but it has worried people, and on that ground a rethink is needed, and perhaps further clarification about how that will be introduced is needed. The parents, who got a lawyer to take them through what they envisaged the new system would be, wrote to me to say that what they had seen was extremely complex. My hon. Friend made the point about the difficulty of knowing what is referable to a tribunal. Is it now only education matters? What about health and other matters—where can they be referred to and where can parents appeal? Getting some clarity and simplicity in the system is critical.

In some cases in my area we have had to resort to law, using legal aid. There is therefore some anxiety about some of the restrictions on access to legal aid. Some clarity about that would be extremely helpful.

Everyone has their own experience and some of these cases are the most distressing I have ever dealt with, but I read John Harris’s piece in The Guardian a few months ago and recommend it to other hon. Members, because it summarised for me exactly what many of the parents in my area have gone through. They have been fighting their way through the system and then the Government come along and promise the opportunity of improving it, but now many fear that, in fact, we may be going backwards unless we get secure commitments from the Government.

[Angela Watkinson]

The hon. Gentleman may be aware that a problem for families who have a child on the autistic spectrum that often goes unnoticed or unmentioned is the financial burden. Often, because the child has poorly developed gross motor skills and co-ordination, there is lots of accidental damage in the home, with items such as televisions, washing machines and carpets having to be replaced quite frequently, so in addition to all the challenges he has just listed, there is also a hidden financial burden of which most people are unaware.

[John McDonnell]

I am glad that the hon. Lady makes that point, which I should have made earlier, because it is absolutely critical. We can get all these rights, but we need to be able to finance them, and it is not only local authorities and other services that provide that funding, because families often have to complement it. That needs to be taken into account in the benefits system.

I will give another example. When it comes to housing for families with a child on the spectrum—I have families in my constituency who have more than one child on the spectrum—one of the biggest clamours is for a garden so that they can play outside. I have dealt with one such family who were allocated a house by the local authority—it was in the private sector—that was on a busy road near a roundabout and had no front garden. That was a particular problem, because when the door was opened the child could run straight out on to the road.

There are many issues that must be dealt with when addressing the complex needs of individual families. That is why we had hoped that the new legislation would show a broad understanding and acceptance of the complexity of what individuals and families have to go through and at least have a faster and more simplified system that gave greater security. The message I am getting from the parents and local organisations I have met is that they are very fearful that their existing rights, limited though they may be, and the existing system, however difficult it may be, might be undermined and that everything we were hoping for in the new system will not be achieved.

I hope that, as a result of this debate—this is why I welcome it—we can improve some of the Government’s proposals and that they can then take away some of the concerns that have been expressed today to ensure that we get the legislation we all need and want.

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[Jim Shannon]

I thank my hon. Friend for that comment. We want to exchange our ideas and to ensure that if something is not working right, we do it better. Ministers in Northern Ireland would be more than happy to be involved.

I want to highlight some of the elements that must form the foundations of any autism legislation and that have been implemented in Northern Ireland. The Autism Act (Northern Ireland) 2011, unlike the English autism legislation, is equality driven and lifelong focused. We look at the child at an early stage and as they work their way through school and into jobs, which each of the Members who have spoken have mentioned.

The 2011 Act amends the Disability Discrimination Act 1995 to include those with social communication disabilities such as autism. That supersedes the Equality Act 2010 in Great Britain, which provides recognition only in guidance, not in the primary legislation. We have taken that a stage further. The 2011 Act changes the definition of disability in the 1995 Act so that the entitlement to services of people with autism is no longer measured solely by their IQ or their physical ability. Some of the things that a child or young person is asked, such as whether they can walk from A to B, are ridiculous when trying to assess disability. Access to services and benefits also now relates to a person’s level of social and communication impairment or function.

Previously, disability living allowance was disallowed because autism did not clearly fit into the protections and the definition in the 1995 Act. That is no longer the case. I suspect that all Members in the Chamber have fought DLA appeals for young people who have autism. Ten years ago, it was sometimes extremely difficult to explain to the DLA panel that a certain young fellow or girl needed more care and attention than their brother or sister who did not have autism. It is easier now, because there is a better understanding of autism. We have tried to address that issue in Northern Ireland.

We have placed a duty on the Department of Health, Social Services and Public Safety to act as the lead Government body in producing, reviewing and implementing a cross-departmental strategy for autism. Currently, cross-departmental co-operation is only discretionary. However, we have a strategy in place that brings all the Government bodies together and ensures that they all focus on what it is important to do. We have placed a duty on all Departments to agree a data-collection system to calculate the current and future need for services for people with autism and their families. That helps us to plan for the long term.

[Angela Watkinson]

Does the hon. Gentleman agree that any autism strategy should include respite care for the family?

[Jim Shannon]

Absolutely. Anyone who knows such families knows that that is critical. One just has to see the boisterousness of the young person and the distressed look of the mother to know that the mum just needs a bit of respite care to get a break for a wee while. That is an important factor that perhaps we have not mentioned. I thank the hon. Lady for raising it.

In Northern Ireland, we have also placed a duty on the DHSSPS to detail clearly how the needs of families and carers are to be addressed. There is a clear directive in the strategy on the development of family support services. We have placed a duty on the Government of Northern Ireland to implement an effective autism awareness campaign, for example using information websites and poster campaigns. It is important that we take the five points of that strategy together.

It is my belief that the rest of the UK should handle the issue of autism in a similar manner to Northern Ireland. I urge the Minister to interact with Ministers in Northern Ireland to exchange ideas, understand how our system works and find out how the legislation can be improved. If we can do that, we will have achieved a lot.

I also believe that we should implore all those involved to look carefully at the work and outcome of the Autism Act (Northern Ireland) 2011. When the Government consider their draft legislation, to which the hon. Member for South Swindon referred in his introductory remarks, I believe there is no better system, at least to start with, than that in Northern Ireland.

To be forewarned is to be forearmed. Figures indicate that the number of children with autism in Northern Ireland is rising—as in the rest of the United Kingdom—and we sense the effect that is having on society and individuals. It also impacts on people’s financial circumstances as there is a drain on the moneys necessary to deal with this condition. We must prepare and set moneys aside for that purpose.

We all know families who are affected by this issue, and they do not ask for too much or more than they are entitled to. We are being asked to give only what they need and what we can provide, which I believe is support. Above all, we need to help those children and families to have an acceptable quality of life. That has not yet been achieved, but hopefully it will be once the draft legislation is introduced.