The Bubb report, WINTERBOURNE VIEW – TIME FOR CHANGE Transforming the commissioning of services for people with learning disabilities and/or autism, is published today. It started as a conversation from which many people with learning disabilities and self-advocacy organisations were concerned they would be excluded. The last thing which was needed three years on from the Winterbourne View abuse scandal, was another discussion amongst professionals about how they should improve.
Social care policy moves in mysterious ways though. It became clear early on in the process that Sir Stephen and his committee were genuinely keen to engage with the views of people with learning disabilities and to take those often radical views seriously. People with learning disabilities have helped the committee to come up with some of the clearest and strongest proposals for real change since Winterbourne. In doing so they have taught us why every planning process about the learning disability sector needs their voices. Groups exclusively of professionals who do not themselves have learning disabilities have a tendency to conduct conversations about ‘difficult’ issues like the persistence of the broken and at times damaging or even fatal Assessment and Treatment Centre (ATU) model, with too much focus on the unwritten etiquette of ‘professionalism’.
We are mostly polite to each other and avoid arguments. We are loathe to suggest things that involve our fellow professionals losing face, status or their jobs. We are inclined to forgive failure, in case it’s us screwing up next time. Conversations about ATU involving professionals with learning disabilities from CHANGE and other organisations were different. People talked about their own lives and their friends’ lives. They were polite but they were clear that they were there to achieve change and that change was something you could see, time and challenge. If people made vague noises about things being important, they pressed harder for actions with names and dates attached. At times they were upset and their stories were upsetting. Surprisingly, they were rarely angry, although they had the right to be.
Sir Stephen and his group had the humility to embark on a steep learning curve around co-production with people with learning disabilities. In return, they got a better report, which recognises, for instance, that we need a closure programme just as much as an improvement programme. People with learning disabilities were also clear that they expect to be involved in decisions and to be employed in peer support, advocacy, inspection and planning roles. NHS England CEO, Simon Stevens, and other senior leaders have already met with them to explore how to employ more people with learning disabilities in NHS roles.
We support the view that we need to see closures, not just improvement of a broken and outdated model of care. The Shared Lives community can demonstrate that people with learning disabilities who are considered ‘challenging’ by some services, can often live safely and well in ordinary family homes, at a fraction of the cost of low-outcome institutional care. We are all less challenging when we are living well with people who love us. And exactly what is the ‘appropriate’ reaction to finding yourself incarcerated, without having committed a crime, in a place you hate?
Shared Lives will not be for everyone, but it is one of several tried and trusted community-based support models which everyone should be offered.