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Learning disability week: A call for change

This week is Learning Disability week. It’s an opportunity to shine a light on the experience, ambitions and capabilities of people with learning disabilities, and share what communities are doing to make places and services more inclusive.

Through our Social Movements in Heath and People Powered Results programmes, Nesta is using two different methods to collaborate with people with learning disabilities who are driving change. We’re learning a lot from our partners about what inclusion, self advocacy and co-production mean in practice - and the real work needed to hard-wire ‘systems’ so that people with learning disabilities have choice and control over their lives and are at the centre of the services they receive.

The 100 Day Challenge with Essex, and Learning Disability England’s work developing a national self advocacy movement, are examples of how change can happen from both inside and outside the ‘system’. In these programmes, people and communities are rewriting the rules - making their voices heard and showing acts of leadership from the grassroots that are challenging the way things are normally done.

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The right to a meaningful and fulfilling life

In partnership with Essex County Council, Nesta’s People Powered Results team is running a 100 day challenge to show what can be done differently to support people with learning disabilities and autism to live meaningful and fulfilling lives.

Teams are made up of 40 people, representing 23 organisations and people with lived experience. In the first 50 days of the challenge, teams have set up lots of ideas, including an inclusive cricket team, pooling direct payments, employer awareness events, and even a mobile cafe run from a converted horse box by people with learning disabilities and autism.

We caught up with Callum, a trainee at Barley Twist Garden Centre, John, a community care assistant and Joe, Director of Operations for Essex Cares Ltd, to hear about what feels different for those taking part.

John

I jumped in straight away, because I really want to make a difference and it’s the only chance I’ve had to be able to do that in Canvey Island.

Seeing the result from what we’ve organised, it’s a good feeling. For me, watching the guys out playing cricket, making friends and knowing we’ve made something happen, I feel very proud. Because I know...there’s not a lot of opportunity here. I think it’s important because I see other places that are kind of ahead in certain ways, and then there’s Canvey that is kind of left behind.

Our team comes from all different backgrounds - everyone has got their inputs, their contacts, and it’s really useful. We all come together really well.

Callum

I’m not used to talking to strangers and at first it was a little bit scary but now I feel good being in a room full of people. I’ve got a lot more friends now and I like the confidence that it’s given me.

Callum and John 100DC participants

Callum (left) and John (right) enjoying the Canvey Island seafront

Joe

I’ve worked with adults with learning disabilities and Autism for over 20 years and I feel the 100 day challenge could represent a watershed moment in the design and delivery of services for people with learning disabilities in Essex.

The process is driven by people with learning disabilities and autism, their families and carers

Seeing teams being led by adults with learning disabilities and front line members of staff feels like a breath of fresh air blowing through the system. Often new approaches and strategies involve carers and people with lived experience, but rarely do they genuinely transfer the power (and funding) to them. On a small scale the 100 day challenge has enabled this to happen...and sets a very powerful precedent.

Being prepared to take positive risks

The exciting thing about the 100 day approach is that it helps leaders to encourage and accept positive risk - we accept that some initiatives won’t work but support them anyway.

This has created an environment where teams are less afraid to experiment and more open to exploring what they’ve learnt if things haven’t worked.

Seeing teams being led by adults with learning disabilities and front line members of staff feels like a breath of fresh air blowing through the system.

Joe Coogan - Director of Operations at Essex Cares Ltd

Listening, and accepting the status quo isn’t good enough

Given a blank sheet of paper and the opportunity to determine how funding is spent, people with learning disabilities have told us they would spend far less on residential care and much more on services that support them to connect and make friends, develop their skills and find training and employment.

As part of the 100 day challenge Essex Cares has carved out a paid role for a young adult soon to graduate a local Special Educational Needs college as a delivery driver in the equipment service. By looking at our own organisation and supply chain, we can already see where the next 10 or 20 job opportunities can come from.

It is heartening to see commissioners letting go and empowering the community to have their say, listening to that clear message and encouraging people to have high aspirations.

Teams are almost at the day 75 mark and are busy testing their ideas- we are looking forward to seeing the impact they’ve had at 100 days and their plans to spread and scale up their work.

For more information about Learning Disability week search #hereIam #LDWeek19 on twitter.

Author

Sophie Mckechnie

Sophie Mckechnie

Sophie Mckechnie

Programme Manager, People Powered Results

Sophie is a Programme Manager in the People Powered Results team at Nesta’s Health Lab. She is working on 100 day innovation programmes in Elective Care.

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