Why ‘freedom fighters’?
Recently, the care minister, Norman Lamb, held a round table with providers to talk about how we could get better at providing services to people with learning disabilities and challenging behaviour as part of the delivery programme from the Department of Health’s Winterbourne View review.
Doreen Kelly, from Beyond Limits, was among them and used the term ‘freedom fighters’ instead of ‘people with challenging behaviour’, which struck me as a much more accurate label if we have to use one.
Since Winterbourne View, there has been a radical shift in where we think people with learning disabiliteis or challenging behaviour – or freedom fighters as I shall refer to them (see right) should live. That is to say, they should not be sent away from family, friends and communities to assessment and treatment units (ATUs) where very little real assessing and treating is going on.
It is good to see that the Department of Health’s Winterbourne delivery plan says people should stay in their own communities and get the support they need to do so, and includes plans to help those placed in ATUs inappropriately irmove back to appropriate community settings.
Freedom fighters are the last remaining group of people with learning disabilities to be routinely sent away from their communities and shut away from society, occasionally because they need to be kept safe in hospital, but more often because we don’t have the local services with expertise and housing to enable people to get what they need to remain in their communities.
What do we mean by community settings?
So while this development is positive, and the ambitious plans to get people back to their communities should be applauded, there is something that is still worrying – how ‘appropriate community settings’ is interpreted and what that might mean for the large number of people who will be moving on from ATUs over the next two years.
There are as yet no plans or funding for the housing that will be needed to get large numbers of people back to their communities. The Department for Communities and Local Government (DCLG) and the Homes and Communities Agency (HCA), the organisations that plan and distribute funding for housing, are absent from the long list of organisations signed up to the concordat to deliver on the government’s Winterbourne commitments.
So if appropriate community settings does not necessarily mean that people will have the right housing opportunities, what does this mean for the people coming back to their communities? Will we see care providers step in and provide housing that is tied in with the care package? Will we be seeing more community-based residential care or local inpatient services to meet needs?
Housing is key
If you think about it, freedom fighters are often the people that need to have the most control over their environment, who they live with and how they are supported. Common sense dictates that getting the right location and environment is the foundation of getting everything else right. Who people live with, if anyone, has a massive impact on well-being and behaviour. The right care and support of course is crucial but that is not the only piece of the jigsaw. What we don’t want to do is replicate models of housing and support that restrict people from this level of control in their lives.
Many people who are living successfully in their communities have their own home or tenancy and support built around their needs, not the needs of an organisation or service model. There is an Alternative, a report by the Association of Supported Living quoted in the delivery plan, describes how bespoke housing and support solutions both made a positive difference in people’s lives as well as save money. We need to take this opportunity while the most excluded people in our society are finally under the spotlight to make the radical changes needed and avoid the mistakes of the past where we simply reprovide institutional models in more acceptable forms. People need freedom to control what happens in their lives or it won’t work.
Alicia Wood is chief executive of the Housing and Support Alliance
Is supported living delivering on its promise of independence and choice for learning disabled people?