As I was writing this article, a young man with learning disabilities, Thomas Rawnsley, died whilst his family were battling to return him to his home and community. Thomas had been sent to an Assessment and Treatment Unit, where he was abused, and then to a care home, where he did not want to be. They have been fighting to find an alternative with the support of some of the most knowledgeable professionals in the country. These professionals have supported the family in meetings and advocated on their behalf when they needed it.
The striking thing about this is that they were all professionals working for housing or care providers. None of these organisations were doing it to get business – they were doing it because they have seen injustice and have the knowledge, resources and skills to offer support.
Just over a year ago, Gary Bourlet made a plea to providers at the Housing & Support Alliance’s conference to support him to set up People First England. Offers of money and support came in rapidly. People First England is now working with 20 chief executives of provider organisations to talk about how People First England can be strengthened and sustained with the support of providers but operate completely independently.
Learning disability providers are starting national and local initiatives to support people with learning disabilities they are not contracted or paid to support; EasyRead Newspapers, making cinemas more accessible for people with autism, women’s sexual health projects, running local Timebanks and Small Sparks schemes, voting campaigns… the list goes on. What I think we are seeing is a shift from providers as just contractors of services towards providers as agents for social change.
This contrasts with the stories about incompetent, neglectful and abusive care and support providers that we see and hear about almost daily. We live in a society where there are people and organisations that see disabled and older people as cash cows, call themselves care providers and do the least amount of caring possible for the maximum income. Too often they are providing poor care with devastating impacts on people’s lives.
I suspect the majority of housing and care providers are somewhere in between. They care about supporting people well but do so within the restraints of institutional structures and financial resources – a compromise that benefits providers and commissioners rather than the people they support. Sadly, most providers do not think beyond the boundaries of the work they are contracted to do – but why should they?
We have never before seen people with learning disabilities and other vulnerable people left without the support they need to live like everyone else. Most organisations feel a moral responsibility to people with learning disabilities more widely but need to develop a culture to bring this about. Some opt to keep their heads down and not challenge local or national injustice because of threats to their funding. Few have felt comfortable publicly challenging the abuses that are going on for people post Winterbourne View or the loss of funding for self advocacy groups.
We need to question what we are in this work for if we aren’t going to shout about better lives and rights for people with learning disabilities, challenge the wrongs, or do everything we can to make a difference more widely to the lives of people with learning disabilities.
