Meleri Thomas sets out the case for the proposed Autism Bill
Ten years on
It’s been over ten years since the Welsh Government published its Autism Action Plan. Wales was the first UK nation to develop a strategy to meet the specific needs faced by people on the autistic spectrum and the Welsh Government deserves credit for their vision.
The 2008 Autism Action Plan offered much to be welcomed: it described developing clear diagnostic pathways; improving data collection; and training for professionals. However, the extent to which these ambitions have been realised over the last ten years is far from clear.
We know, for example, that people can still wait years for a diagnostic assessment. There is also little data available to help local services plan ahead. Unlike in other parts of the UK, teachers who train in Wales could enter the classroom with no knowledge of autism whatsoever.
Ten years on and it’s clear that many of the same issues that the Action Plan hoped to address still remain unanswered. We can no longer carry on with the same thing we have always done and expect different results.
The National Assembly for Wales’ Health, Social Care and Sport committee is currently looking at an Autism Bill, proposed by Paul Davies AM, which aims to protect and promote the rights of autistic people and their families in law.
The Autism Bill offers the clarity and compulsion that has so far been lacking. It provides for some basic, statutory foundations on which to build innovative and sustainable autism services, fit for the future. It also provides a level of certainty and consistency desperately needed by autistic people and their families throughout Wales.
The proposed Autism Bill
For an autistic person, getting a diagnosis can be an important part of better understanding themselves and how they see the world around them. It can also be a significant factor in someone’s ability to access services and support. The reality is that in some parts of Wales, the wait to even see the right professional who can begin a diagnostic assessment is too long. Instances of people waiting more than two years for even their first assessment appointment are too common. For what other condition would it be acceptable to wait this long? The diagnostic process can be complex, but to wait two years before it even begins is unjustifiable. The proposed Bill will put clear expectations on how long someone would expect to wait until their first appointment and will put monitoring arrangements in place, based on best clinical practice.
Accessing the right support as an autistic adult is particularly difficult. Employment and housing present substantial challenges that are difficult to navigate without the right help. Where this help is lacking, someone may find themselves without secure accommodation and as only 16 per cent of autistic people are in full-time paid employment, this can lead to further challenges later in life. This has to change. The proposed Bill will ensure there is specific statutory guidance available to support autistic adults and better data collection, enabling services to plan more effectively for the future.
Professionals are often not always provided with the information and training they need to support autistic people effectively. Whilst some professionals go above and beyond what is expected of them and can be a lifeline to those on the autistic spectrum and their families, this Bill would mean that there isn’t a reliance on a few individuals but a better system of training embedded into initial qualifications and continual professional development.
Meaningful evaluation and tangible outcomes are key to ensuring that legislation works properly. The proposed Autism Bill would seek to ensure that whatever the government and whatever their priorities, there would be a robust strategy in place that would be regularly and independently reviewed, preventing autism from sliding down the political agenda.
In June 2017, Assembly Members across all parties voted overwhelmingly to allow this Bill to be developed. It is encouraging to see Members approach this issue with open minds, despite some legitimate reservations.
One argument, for example, is that existing legislation, such as the Social Services and Well-Being Act or the Additional Learning Needs and Education Tribunal Act are needs-based, providing all people in Wales with equitable access to the services and support they need, regardless of their specific condition. However, such legislation relies heavily on the ability of public bodies to assess the needs of an individual, help them to identify meaningful outcomes, and then put support in place to help them achieve their goals. A recent National Autistic Society Cymru survey found that nearly half (48 per cent) of autistic adults cited a lack of professional understanding as a barrier to accessing support. It’s clear that existing legislation isn’t enough to reduce the very significant barriers autistic people face.
Such issues have been examined and addressed in detail over the last year or more. The consultation exercises that shaped the development of the Autism Bill attracted well over 300 responses, the vast majority of whom supported the legislation. What is now needed is a clear focus and attention on making the legislation as good as it can be.
Obviously, legislation alone is not a silver bullet. The day any such Autism Bill is enacted will not mean wholesale change overnight. But this is an opportunity to provide autistic people with a level playing field, where someone can access the support they need without being bounced between other statutory services, such as those designed for people with a mental health condition or learning disability.
During the scrutiny process of the Bill and as we evaluate the impact it could have, let’s also ask what the consequences of inaction would be on the 34,000 autistic people across Wales and their families.
The challenge for anyone still to be convinced that this legislation is needed would be listen to the views and experiences of those people and offer a solution that commands their support and makes a meaningful and tangible difference to their lives.
That’s what this Bill does and can do.
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