Friday, May 4, 2012

Turning Lives Around Through Supported Living

Diane Lightfoot
www.unitedresponse.org.uk/what-we-do/how-we-work/supported-living

United Response was set up in 1973 to provide a service based on supported living principles to a handful of adults with learning disabilities in a house in West Sussex. At the time, most such adults usually found themselves placed in institutions, isolated from the rest of society, with few rights and fewer opportunities to live a full and active life. Forty years after that first house was set up, United Response now supports over 2,000 individuals in almost 300 locations across [The United Kingdom], but supported living is still at the core of our work.

The majority of our support is officially “supported living” where we support people living in their own homes, with their own rights as tenants or owners, but where we support people in homes that are registered as residential care, we run these along the same principles; enabling people to have control and choice over how they live their lives. We also have a strong track record in deregistering services.

Supported living can describe a huge range of different services, but its goal is always to allow people who may need some support in their daily lives to receive it in their own homes, thus retaining their independence. The support offered not only helps them manage their household and needs within their own home, but should enable them to be active in their community, whether through social activities or work. The last 40 years has seen huge strides in supported living, and it is now widely accepted as the best and often most cost effective way of providing support to people with learning disabilities (in the US, intellectual disability) in a way which values them and provides fair opportunities to live a full life. However, the progress is not yet complete.

And yet supported living not only gives people more independence and control over their lives but also provides an additional element of safeguarding; where people are known and recognised as a member of their local community, the community in itself can develop into an informal “circle of support” -- looking out for its more vulnerable members and, crucially, noticing when something is wrong. They also allow much easier contact with family, another example of supported living aiding safety.

By contrast, one shocking recent example shows what can happen when people with learning disabilities are placed in settings that not only isolate them, but leave them open to abuse and neglect. When Panorama filmed its exposé of the Winterbourne View “secure unit” in Bristol -- revealing harrowing examples of human beings not only being robbed of their freedom and dignity, but actively physically abused -- it shone a spotlight on what can happen when support goes horribly wrong behind closed doors. It shocked the nation, rightly, but what is really critical is that this now galvanises local authorities and support providers to prevent such incidents happening again and embracing supported living far more fully.

One argument often used against supported living is that it is only suitable for more able people. But we know from our experience that people with learning disabilities -- including those with complex and challenging behaviours -- can live in ordinary, community based settings when supported by well trained and dedicated staff. To give just one example, we support a man called Andrew in Newcastle. Andrew has a learning disability, autism, doesn’t communicate verbally and has in the past been prone to “challenging behaviour,” meaning outbreaks of violence born of years of frustration at not being understood.

Andrew spent several decades in an institution with almost no opportunity to leave its confines and very little support to help him do the things he enjoys in life. When United Response first met Andrew and began preparing him for a move into his own home with his own tenancy, his former staff said they expected him back within months, he wouldn’t be able to cope in that independent setting and would always be too “dangerous” to go out into the wider world.

Five years and a lot of patient, creative and skilled support later, Andrew is a well known member of his community, enjoying bowling, shopping and visits to cafes and pubs. Just recently, he and his staff worked together on organising a birthday party in his local pub, a thing his parents confessed they thought they would never see. Perhaps most tellingly, Andrew’s “challenging behaviour” has almost completely vanished: with a full life where he feels valued and listened to by his staff, he rarely feels the frustration and stress that used to trigger that behaviour.

Everyone who has a learning disability, whether as profound as Andrew’s or not, deserves the chance to live as independently as he does, to develop skills and build a real life. United Response will keep working towards that goal, but we need local authorities and the general public to work with us in making sure this is a priority for us as a society. We should not settle for less.