Autism - bringing families hope through corproduction

The challenge

Autism is an area of commissioning that needs regular attention and service development to effectively meet the needs of the population.

A cross-sector, all-age strategy is due to be published in 2020, with the aim of improving the lives of people with autism across Coventry and Warwickshire. The strategy was coproduced with Grapevine, a local charity supporting local people tackle issues such as isolation, poverty and disadvantage, through a series of multi-agency partner events. At one of the coproduction events the idea of organising a conference to support local people was discussed, and all agreed it would be a fantastic way to support local people.

What we did

The CCG supported Act for Autism, a Warwickshire-based social enterprise that draws on personal experience, extensive training and research to educate, coach and support young people, families and professionals about autism, to organise a conference which would:

  • Address the difficulties in navigating available support
  • Raise awareness of the support available
  • Help those who feel alone in trying to understand information and advice
  • Turn information and advice into practical support
  • Acknowledge and address parents’ experience that less information/training is available to them than is available to professionals
  • Address the experience of being “left” whilst waiting a long time for a diagnosis

The organisation and running of the event was led by Act for Autism, and the CCG supported by sending out conference information so that services would be represented. The act of coproduction for the autism strategy meant that a shared understanding of principles and objectives are already in place and commissioners could step back and encourage individuals and organisations with creative approaches to solving problems and achieve excellent results for the people of Coventry and Warwickshire.

The conference brought together families, children and young people with autism alongside those already providing support and advice in local communities. The purpose of the conference was:

  • To highlight the help already available to children and young people
  • To give hope to families who are waiting for or have received a diagnosis of autism
  • To offer practical strategies and advice to help families from day to day

One of the conference organisers said “I wanted to organise the conference I would have wanted when my son was six. We know that parents need this information”.

The conference covered some of the most important issues for parents and stalls were used to provide advice and support, not sell services or products.

Who we worked with

This was a truly collaborative process, and the CCG was proud to be a part of it. There were dozens of organisations involved, including:

  • Act for Autism
  • Grapevine
  • Coventry and Warwickshire Partnership NHS Trust
  • Warwickshire County Council
  • Warwickshire SEND Information, Advice and Support Services (SENDIAS)
  • The Girl with the Curly Hair
  • Coventry and Warwickshire MIND

The outcome

Over 300 families attended the event and accessed the advice, support and workshops. Parents appreciated the timing and content of the event, and valued that it was available for free. They felt their issues were seen, and were important to the conference organisers and funders. They were really keen that there would be more of these events in the future.

The conference provided:

  • Peer support for families and young people
  • Opportunities to access local early help to support self-management
  • Access to information to help them understand what works for them
  • Networks and connections between services, charities, parents, young people and commissioners
  • Practical tools to help parents and young people manage their challenges and build on their strengths

The conference also helped to foster the hope that people with autism can have a good life. It provided a sense of community that is made up of services, charities, parents, young people and commissioners, coming together to improve the lives of families and young people with autism.

 

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