Posted 3.4.19

Welsh Government - Written Statement: Independent Evaluation of the National Integrated Autism Service and Refreshed Autism Spectrum Disorder Strategic Action Plan

The Welsh Government is investing in the development of new and innovative autism services to improve autism provision.  To ensure our reforms are achieving the results we all want to see, we have commissioned an independent evaluation of the implementation and impact of the National Integrated Autism Service.  To inform our stakeholders of the progress we are making, in advance of the publication of the full evaluation report we published in February, a preliminary findings paper. The full report was published on 1st April and is attached to this statement.

The implementation of the National Integrated Autism Service began on a phased basis from 2016, and the service is now operational in Cardiff and the Vale, Cwm Taf, Gwent, North Wales and Powys and will be fully operational in the remaining regions, West Wales and Western Bay by April this year.  Responding to stakeholder feedback about continuing gaps in support, the service offers assessment services and support for autistic adults and support for parents and carers. It sits alongside children and young people’s Neurodevelopmental (ND) Services and locally supported autism services.

Commissioned in 2017, the aim of this independent study was to evaluate the Refreshed ASD Strategic Action Plan and accompanying delivery plan, with specific focus on the implementation and impact of the Integrated Autism Service. An interim report, focused upon the development of the IAS in Cardiff and Vale, Cwm Taf, Gwent and Powys, was published in March 2018. This forthcoming report draws primarily on qualitative data generated through interviews and discussions with autistic adults some of whom were also parents of children with autism, and family members and carers. The evaluation also sought to identify how the IASs were established in each area and understand their interface with and impact upon other services across health, social care, education and the third sector.

The evaluation finds that the Integrated Autism Service (IAS), where it is established is providing a much needed and valued service. Broadly speaking the IAS is delivering what was intended and most of the key success factors, identified by Welsh Government, have been met. Despite initial difficulties, the IASs in Cardiff and Vale, Cwm Taf, Gwent and Powys are providing broadly the same model of support, supported by the NICE guidelines and it is expected that services in North Wales, West Wales and Western Bay will also do so. There are now consistent diagnostic pathways for adults to the IAS, although further work is needed to clarify pathways to other services, such as mental health. Although it took time, and the involvement of autistic adults and family members in developing the services has been mixed, there are now clear governance arrangements for the IAS in each area and key stakeholders have been engaged. The IASs link to existing services, where available, but integration with voluntary sector services is limited by the IAS staffing and funding model. Relationships with the National Autism Team have improved over time and there is now effective national implementation, oversight and support.

Service users contributing to the study most valued the way the IAS understood and accepted them and many talked about the relief of finding the IAS after a lifetime of “masking” their condition, hiding their concerns and not talking about them. The evaluation acknowledges that there were some frustrations among stakeholders that the IAS could not meet their expectations, or offer more support, but generally speaking individuals’ views have become more positive upon engagement with the IAS. They praised the one to one support provided by support workers, and the groups and training offered, often in glowing terms.

The evaluation finds that the IASs have increased the capacity and quality of assessment and diagnosis services for adults, and improvements to the capacity and quality of children’s assessment and diagnosis services have been made, through the establishment of new children and young people’s Neurodevelopmental Services. The implementation of the IAS has drawn attention to previously unmet demand for autism services and, like ND services, the demand for services has produced (or added to) long waiting lists. At this stage, the evaluation reports that prospects for the future are encouraging.

In September 2018, an extension to this evaluation was agreed to focus on investigating the reasons for continued long waiting times in children and young people’s ND Services and the IAS, and also to explore the scope for greater alignment of ND services. This forthcoming report will be published in early summer. Learning from these independent studies will provide us with more valuable information on where we should focus future reforms, to deliver the improvements autistic people and their families and carers need to see.

The evaluation has provided a solid basis from which to consider future policy development and delivery, making a series of recommendations around ensuring clarity about the role of the integrated service, how services should be developed in the future, including considering the scope and ambition of the IAS and the overall funding approach required to address the wide range of needs being presented.

We are carefully considering all of the recommendations as we work with our partners to embed the service and continue autism service reforms for the long term.  The review and the recommendations made will inform the development of our Code of Practice on the Delivery of Autism Services. This will strengthen and underpin the improvements we are currently delivering and will enable us to identify and address any continuing gaps in provision. 

We continue with our commitment to increase the pace of autism reform.  We have renewed the funding for the National Autism Team over the next three years to continue to support regions to work collaboratively to embed the services and to help ensure that services will understand their responsibilities which will be set out in the forthcoming autism code of practice.

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