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The Autism Act, 10 Years

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The Autism Act, 10 Years The Autism Act, 10 Years On: A report from the All Party Parliamentary Group on Autism on understanding, services and support for autistic people and their families in England Foreword Rt Hon Dame Cheryl Gillan DBE MP Contents Ten years ago, I was incredibly proud Page to campaign alongside autistic people, their families, and autism charities for the 1 Introduction introduction of an Autism Act to make new legal duties to provide adult autism services. 5 Our survey findings We were successful, and the Autism Act was introduced in 2009. It remains the only Act dedicated to improving support and services 7 Our key recommendations for a specific group of disabled people. 8 A decade later, there has been significant Public understanding progress. Awareness of autism has increased hugely. Every council now has an adult autism 14 Support in adulthood diagnosis pathway, whereas fewer than half did before the Autism Act. Today, all but a very 21 Physical health inequality few councils now have a lead commissioner for autism. Autism is also a cross-party priority and, significantly, was mentioned in the vast 27 Mental health majority of parties’ manifestos in the 2017 general election. 33 Education and preparation for adulthood However, every day, I and my MP colleagues are contacted by autistic constituents or their family members who struggle to get a diagnosis, or have to wait several years for one. Too often, they cannot get support from social care or in school. It is clear that 39 Employment there is still much to be done. 46 Access to justice This inquiry set out to find out what actions the Government, health and care organisations, businesses and society as a whole must take to improve autistic people’s lives. Specifically, it looked at what needs to be included in the Government’s revised 51 Summary of recommendations autism strategy. I am delighted that for the first time the Government strategy will include children as well as adults. 57 About this report I am honoured to chair the All Party Parliamentary Group on Autism (APPGA). It is a truly cross-party group, among the most active in Parliament, and I am proud to have worked 57 Acknowledgements with colleagues from across the House of Commons and the House of Lords on this inquiry. Working together, I am confident we can build on our achievements to ensure the Autism Act can live up to its promise. Rt Hon Dame Cheryl Gillan DBE MP 1 2 What is the APPGA? Many thousands of autistic The APPGA is a formal cross-party backbench group of Members of the House of people who need support in the Commons (MPs) and Members of the House of Lords who campaign in Parliament for greater awareness of autism, and improved services for autistic people and classroom, at home, at work and their families. We have also offered autism training for MPs and their staff to in every aspect of everyday life, improve understanding of autism in Parliament. simply are not getting it. {z The Autism Act was a landmark moment in the It is informed by the views of over 11,000 autistic These unmet needs stem from poor autism campaign to improve the lives of autistic adults people and their families, alongside many understanding by professionals and low and their families in England. It requires the professional experts. It is the most in-depth awareness of the duties that are included Government to have an adult autism strategy, analysis of the autism strategy that has been in the Autism Act. But, given the evidence setting out how autistic adults should be undertaken. we have seen and heard, it is also better supported. And it says that this must be undeniable that allocation of funding underpinned by guidance, placing duties on Our research uncovered that the Act has led has affected the ability to provide councils and the NHS to take action. to welcome improvements in some areas of autistic people and their families with support. Over the last decade, there has been the services they need. Ten years after the Act’s introduction, the APPGA an increasing recognition of autism among wanted to gage the impact this legislation has commissioners and the public. However, the Combined, these factors are having made, as well as finding out more about the overwhelming picture that emerged is one of a profoundly negative impact on state of support and services for autistic people deeply concerning unmet need. Many thousands the lives of the 600,000 autistic in England. This report is the result of a wide- of autistic people who need support in the people in England and their ranging inquiry across all the areas the autism classroom, at home, at work and in every aspect families. Too many are facing strategy covers and the issues autistic people of everyday life, simply are not getting it. unacceptable health inequalities, and their families told us matter most to them. and are at risk of falling into mental health crisis or social isolation and of dying early. It is informed by the This must change. This year is views of over 11,000 our best opportunity to make that happen, as the Government autistic people will refresh its autism strategy and extend it to children and young and their families, people for the first time. To make a difference, this strategy must set alongside many out concrete actions so that autistic people and their families can live fulfilling professional experts and rewarding lives. This report sets out what the APPGA has heard and what the Government must include in the next autism strategy. It is now for the Government to lead the way. 3 4 Our survey findings The impact of the Autism Act: Access to wider support: Just 38% of autistic Just 24% of autistic adults and 25% of Just 8% of autistic adults adults and 26% of family families told us they and of families told us 5% members told our inquiry 36% 30% 26% were aware of the that since the Autism Act that they thought public Autism Act. came into force health and understanding of autism care services in their area had improved since the have improved. Autism Act was passed. Just over a third (36%) of Less than a third Only a quarter people who have gone through (30%) had enough (26%) said they were 38% the transition to adults’ services time to prepare for the properly supported. 25% 8% 5% 24% 26% say they were fully involved. transition to adulthood. Benefits assessments: Unmet mental health and social care needs: told us they are not getting the 60% told us the forms to apply for benefits support they need, which could total were difficult to complete. 71% as many as 327,000 71% autistic adults across England. 60 Just 19% told us the location 58 of the assessment was suitable. 50 % autistic adults told us they need services. 40 % xzx{ told us they have access to|z|. 38 Just 14% told us they were satisfied with 30 the length of time it took for their claim to be processed. 29 29 26 20 21 20 21 16 Professional understanding: 10 12 6 9 4 40 5 Autistic adults' opinion of % of professionals who have a good understanding of autism 0 35 38 Families' opinion of % of professionals who 30 have a good understanding of autism Counselling 32 Short breaks daily living Buddying or Support with Social groups befriending Support to live Social worker Care coordinator/ 25 more independently 20 23 22 23 19 18 15 16 76% 82% 14% 10 12 13 10 11 6 4 5 5 2 0 76% of autistic adults told 82% of autistic adults Only 14% of autistic people GPs Police us they reached out for said the process of getting said there were enough Nurses staff Mental health Jobcentre Plus mental health support in support from mental health mental health services in their Social workers professionals Support workers Hospital doctors 5 the last five years. services took too long. area to meet their needs. 6 Our key recommendations Chapter one – Public understanding • Create and fund a long-term, properly • Set out clear requirements to NHS England funded national autism understanding and local health commissioners on the campaign, aiming to shift the attitudes need to commission community mental Introduction and behaviour of millions of people. health services that meet the needs of autistic people, and ensure that this is Rt Hon Dame Cheryl Gillan DBE MP • Undertake a cross-Government review on implemented. where autism is recorded in Government Awareness of autism has come a long way over data collections to identify where • Set out and deliver an ambitious plan recent decades. The last autism strategy, Think improved information could lead to to move autistic people out of hospital Autism, made raising awareness and acceptance better support. into the community – succeeding its top objective. More recently, an increasing where Transforming Care has failed. number of popular portrayals of autistic people • Commit to establishing well-resourced The Government should establish an across the autism spectrum have raised many of specialist autism teams in every local inter-ministerial group to ensure cross- the issues that autistic people face into the public’s authority in England. Government accountability on the delivery consciousness. Our inquiry wanted to hear about of this programme. whether enough has been done and whether • Establish an autism social care awareness alone would improve the lives of commissioning fund for councils to use • Commission a review tracking the journey autistic people. to set up and run new autism services of autistic people in mental health Polling from the National Autistic Society in 2015 and support.
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