Co-Production Learning Disabilities & Autism

Pro-actively improving support

The Pro-Active Community is a registered charity run by people with learning disabilities and autistic people. It was set up in 2015 by Active Prospects, a Surrey-based charitable care provider which supports around 250 people each year. In 2018 the Pro-Active Community won the People’s Award at the National Learning Disability & Autism Awards, and they became a registered charity in 2020. They also run the Surrey People’s Group giving a platform for everyone to improve local services and make connections.

Two members of the Pro-Active Community, Mimi Ghaith and Matt Leadbeater, explain how they use their experience to help improve the support and information that people with learning disabilities or autistic people receive.

Mimi: I’m employed by Active Prospects as a paid Expert by Experience Coordinator. This means that I help Active Prospects with:

  • Quality checks of services, which look at services from the perspective of someone who receives care services. I’m one of 8 trained quality checkers at the Pro-Active Community. We also provide quality checks of other care providers’ services, not just Active Prospects. There’s more information about our quality checks on our website at www.proactivecommunity.org.uk.
  • Annual plans for services: it really helps a service to hear from users when deciding on their priorities each year.
  • Recruitment – members of the Pro-Active Community help Surrey County Council and Active Prospects with recruitment by sitting on interview panels.
  • Induction and training – I explain to new starters how much of a priority co-production is for Active Prospects. I also help to strengthen training courses by giving the experience of care receivers.
  • Recruiting other experts by experience into paid work.

Recently I visited some of Active Prospects’ care homes with Jade Vallance, Director of Care. Jade and I did an audit of how people are now leading aspiring lives after lockdown and the impact of zoom fatigue. I think it’s important that after two years of restrictions in care homes, services now find ways to support people to get back to living the same opportunities as everyone else.

The visit showed me how much people need face-to-face contact for their wellbeing. The Pro-Active Community has continued to meet by Zoom during the pandemic, and we’ve all got used to video calls, but there’s nothing like meeting up in person now we’re able to.

Matt: I volunteer as a fundraiser for Pro-Active Community. Last year I raised over £1000 by climbing the 02 with my support worker Christine. It was a dream of mine to do this, but I wasn’t expecting it to be over 30 degrees when I did the climb!

Last year I was named as one of the Dimensions Learning Disability Leaders, which made me very proud. I was also a finalist for Volunteer of the Year at the Third Sector Awards. This year I’ve already run a bake off and my next challenge is organising a raffle. It’s important for people and companies to meet people who their donations will help, and I love getting out and about and meeting new people, and explaining the work we do.

At the moment, I’m one of five members of the Pro-Active Community who are being paid to co-design a Peer Health Champions project with Surrey County Council. We are designing a training course which will give people with learning disabilities the knowledge and confidence to give help and advice to their peers to improve their health and wellbeing.

Edel Harris

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