Written Statement: Improvements in autism services

When the Assembly debated autism services this July, Members acknowledged that services are improving and Members wanted to see our reforms being delivered at pace.

In April, I issued a Written Statement about the areas where we are making progress. I committed to the publication of the independent evaluation on the Integrated Autism Service which made recommendations about areas that need more focus. In June, we published the summary report of our consultation on proposals for a Code of Practice on the Delivery of Autism Services. The National Autism Team also published their annual report reflecting examples of the outcomes achieved with case studies demonstrating real improvement in many autistic people’s lives.

We know from stakeholder feedback that there is increasing demand for autism services. I commissioned an extension to the evaluation to provide a clearer picture of the current situation and to make sure we have the information we need to make the right decisions about future services. The evaluation report entitled a Scoping Study for Alignment and Development of Autism and Neurodevelopmental Services, has now been published. It provides further insight about the capacity of our services to respond to increasing demand for support.

I want to be clear that the Welsh Government accepts the recommendations made in the both independent reviews on autism services. We are acting on these recommendations by undertaking demand and capacity review of children’s neurodevelopmental (ND) services, the Integrated Autism Service (IAS) and wider autism support. The first phase will be completed by October and will provide an accurate picture of how the ND and the IAS services are operating and managing rising demand within services.

In phase two of this review, we will take a more detailed look at planning sustainable services for the future, with a particular focus on the workforce. Many of the issues highlighted are common across health and social care, within mental health and children services. Discussions with our partners including autistic people and services tells us that there is no easy solution to address increasing demand. It is not as simple as increasing funding to recruit more staff, because there is a shortage of suitably trained specialists. It won’t be enough to impose legal duties and tighter targets, as this will place even more pressure on hard pressed services to concentrate on achieving targets at the expense of much needed support. We know that a focus on reducing waiting times is achieving results, but there is a cost as in many areas clinicians do not have capacity to provide post diagnostic support for children and their families. There are parents who are seeking re-assurance and support following their child’s diagnosis and staff who report their own frustration about the limitations in the range of support they can offer.

Some see the answer is to introduce autism legislation, but we know that in England where the Autism Act was passed in 2009, this has not achieved the benefits that were promised, adult waiting times are very long and access to training is patchy (see results from the 2016 and 2018 Autism self-assessment framework exercises on GOV.UK). There is no equivalent to the progress we are making in Wales in the Integrated Autism Service, the National Autism Team supporting services and the free resources developed and now available on our dedicated autism website. 

We want everyone who has care and support needs to access the services they need, we must also recognise the hard work and dedication of all the staff delivering autism and neurodevelopmental services, in the face of increasing demand. We have a duty to acknowledge the complex and often difficult work they do day after day. I know that many are feeling under increasing pressure, so it is important that we offer support and encouragement to all those people doing important work in their rewarding field.  

Our priority for neurodevelopmental and autism services over the next year is to ensure that services are sustainable from the long-term. The investment we are making to children’s neurodevelopmental services will continue and we are monitoring the outcomes closely. The Integrated Autism Service is funded to March 2021. As we fast approach this date I know there is increasing anxiety about future provision. To allay some of this concern I am making that £3m recurrent funding without prejudice to any changes we may seek to make to the operating model of these services following the conclusion of our evaluation studies. 

We are also underpinning our commitment to lasting improvement with the delivery of the Code of Practice on the Delivery of Autism Services. Further to the first consultation on our proposals earlier this year, we continue to listen to autistic people through direct engagement at events and meetings across Wales. We held our first round of technical groups to advise on the code in July this year, they will meet again in November. We are organising further stakeholder events in both West Wales and North Wales during November. We are also working with our partners in local authorities to listen to the views of local stakeholder groups. I am grateful to all those who are involved in the development of the code. We are listening to feedback and taking action, in response to requests for a clear approach we are issuing a succinct draft code of practice, a separate guidance document to explain what is expected and we are expanding the scope of the regulatory impact assessment to ensure the code is deliverable without impacting on other services. I will send a pre-consultation copy of the draft code to the Health and Social Care Committee by the end of this calendar year for feedback. A public consultation on the code, the accompanying guidance and the Regulatory Impact Assessment will be published early in 2020.