The people with learning disabilities who work at the human rights organisation CHANGE pointed out to me once that people who have a learning disability are the only group of oppressed people who are routinely excluded from what should be their own civil rights movement.
I am keeping this in mind while thinking about what I and Shared Lives Pluscan contribute to Social Care Futures, which will run in parallel to the annual National Children and Adult Services Conference in Manchester this year.
Fully coproduced events start with a blank sheet of paper. That’s the best way to produce something like a neighbourhood plan, where the resources to be used are largely those that the participants bring themselves. It can be problematic, though, for making plans to change services and systems, because there can be a disconnect between what emerges on the blank sheet of paper, and what is already written in seemingly indelible ink on the spreadsheets produced by those systems. Conversely, if you start with the services and try to rethink them, it’s hard to get further than a few tweaks, because those pre-existing conditions seem so restrictive.
The Total Transformation model published by SCIE, PPL, Nesta and Shared Lives Plus includes an approach to local change which attempts to find a middle way between pure coproduction and narrow service redesign. The tool identifies five areas in which support and health services impact upon people’s lives and for each, identifies at least one innovative model which can demonstrate good outcomes and lower costs. The five areas of work are:
- Support in your own home
- Support with accommodation
- Day activities and employment related-support
- Support with leaving hospital
- Whole-community work
The model suggests having a conversation with citizens about each of the five, which starts with ‘What does a good life look like for people using support of this kind?’, which is honest about the state money currently being used and what those budgets are expected to be in coming years, and which looks at what people like and don’t like about current local approaches, as well drawing no the models with a national evidence base. To be useful, any conversation of this kind needs to arrive at decisions about what share of resources (state money, other kinds of funding, people’s time and energy, community resources) will be put into which kinds of model. This will usually include agreement about reducing time and money spend on some things, to increase it in others.
Think Local, Act Personal’s ‘Asset Based Area’ approach broadens things even further: looking well beyond social care or even services in general, to suggest ten changes that local areas would need to pursue to become ‘asset-focused’ in everything they do.
We need, I think, to have those kinds of conversations at national level too. Could those areas which have started to use the Total Transformation or Asset-Based Area approaches, or other change approaches which have similar goals, share their experiences and their decisions at Social Care Futures? Could we identify the features of future support services and systems which we want and don’t want?
In my new book, A new health and care system: escaping the invisible asylum, I argue that we spend so much time tinkering with the big organisations we already have, that we ignore what I see as the most pressing question about the services they provide: what kind of relationship should people who access support and people who offer support have with each other? At present, I think it’s the wrong relationship: starting with proving one party’s needs and dependency, whilst often assuming the other party can do more than any paid professional really can. Not really a relationship at all: a series of brief transactions between a stream of strangers. That can be ok if you have a very specific problem which is quickly and easily fixed, but most people approaching services don’t: they are trying to live well with one or often more long term support needs. They are looking for mutually-respectful and trusting supportive relationships with a small group of people who are in it for the long haul. They want those support relationships to fit with the long-term relationships they already have with family and friends. Models like Shared Lives and Homeshare, which we support and develop at Shared Lives Plus, work in that way by enabling people to choose and build long-term relationships as part of building family and community life. Other models share that approach and I believe that nearly all parts of the health and social care system could try to work in that way.
So perhaps Social Care Futures could help us identify not just ‘good’ models to grow (and perhaps some failing models we would like to see less of), but also the behaviours and relationships we expect of every kind of support service. In turn, we would have to identify what we (citizens, families, communities and community organisations) are willing to invest in making that social care future a reality.