Independent living: choice and control

The Independent Living Programme draws on almost 400 projects over nearly 30 years of JRF research into the lives of a wide range of people. This looked at the barriers that different groups face but also highlighted positive messages, important to people, about the idea of a 'good life'. The projects have been practical, showing that good practice is possible, even in the busiest practice settings. However, 'possible' is a very low threshold to define a good system.

There are potentially so many opportunities to change the social care system (from a Green Paper in Whitehall to an individual service user in Wigan). To narrow it down we looked at a number of key moments:

• Actual experiences of support – 'The Standards We Expect'. We looked at how barriers to person-centred support could be removed in eight very busy practice settings covering a wide range of service users.
• There is a policy vacuum about residential and nursing care. These settings contain half a million of the most disempowered service users. Is it possible to point to ideas of good practice?
• Involving users in the commissioning of services. Direct Payments and Personalised Budgets make up a small part of spend in this area. Is it possible to involve service users in the shaping of services?

The overall findings from the programme suggest the need for a six-fold reality check on policy and practice:

1. Money does matter. Lack of resources hurts good practice. But it is a leaky system: resources in at one end do not necessarily lead to user defined outcomes at the other.
2. Perceptions of people's lives.  Much policy and practice is still within Tragedy, Heroic, Service-Centred, Barriers-based or Paternalistic models of people’s lives. The only model credible with users is a holistic, rights-based model reflecting their lives.
3. People matter. There are people within the system who can make the impossible possible (or the possible impossible). The people who will implement the new changes will be those who implemented previous practice.
4. The system is important.  Good system design does matter, but culture and value change are crucial. There is a danger of trying to graft good ideas onto problematic structures and assumptions.
5. There are lots of tools for choice and control.  They all can work in their proper context. People operate at individual, group and peer levels. The demand for support needs to be matched by the development of credible supply.
6. User-led organisations are crucial. Systems change because of challenge. But there are standards of independence, funding, support and links to service users which must be addressed.