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Secure or segregated?

Posted: 22 January 2004 | Subscribe Online


For village communities: Norma Brier, chief executive of Norwood, the Jewish children and families charity.

"In the Valuing People white paper the government emphasises the right of people to make choices about their lives. For people whose difficulties challenge services or whose complex needs require specialist help, village communities can be a positive choice.

Norwood operates just such a village community near Reading. In Ravenswood village adults live on a rural community campus, comprising 20 small homes and other facilities. A modern village community ensures that daily life is tailored to the needs and wishes of its users no less than in other settings. The users determine how services are delivered. Support workers have specialist skills and communication systems to work with users and offer choice.

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Being part of such a close-knit community can help people who are often devalued by mainstream society to find a place where they feel respected and accepted. But they are no less a part of the wider community than the people who live in that community.

Not everyone with a learning disability copes easily with life in a small house in an urban community. The open space available in a village environment and the reduced fear of main roads and danger can encourage independence by allowing people to move about without constant supervision and escorts.

In an internally commissioned report, Sally Sainsbury and Steve Carnaby compared the quality of the lives of service users living in Ravenswood village with other users living in Norwood houses in the community, and users who live independently or with their families. Fifty users took part in the study. The report concludes that any variation 'owed little to the location of the home'.

Ravenswood village offers a range of classes, activities and clubs for those who want to attend. Some users combine these with attending external facilities. Some work in supermarkets, local pubs and cinemas. Others work in the village in gardening, animal husbandry or administration. A range of adapted transport is available to provide access to everything from shopping to further education and leisure pursuits.

The availability of specialist medical and therapeutic services is one reason for choosing a village community. It is important for those who require extra care and find it time-consuming and difficult to access these services in the community. For adults with multiple needs, participation in local life is frequently complicated and sometimes unwelcoming. Without adequate support, users can become isolated wherever they live. Economies of scale afforded by a village campus allow continuous availability of support staff and drivers. This means fewer cancelled outings and sufficient assistance to ensure visits to restaurants and theatres are enjoyable.

We agree on the importance of inclusion for all people regardless of ability. This can and should happen wherever a person is located and living in a village community is no exception. For adults with more complex requirements, life in the wider community is not always effectively sustained. One Ravenswood village resident says: "I love to paint. I've sold a couple of paintings for £100. Good eh? Work at what you love and you will succeed." For those who choose it, a village community can provide a highly participative and inclusive experience, allowing room for individuality and emancipation."

Against village communities: Jo Williams, chief executive of learning difficulties charity Mencap

"People with a learning disability should have the same opportunity as everyone else to live in their local community with the appropriate support provided for them if they need it. As a former director of social services, I saw people with a learning disability have their lives transformed when they moved from a remote, segregated community into ordinary accommodation in ordinary towns. They were able to enjoy the full range of local facilities and contribute to their local community.

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The closure of long-stay hospitals is imperative and it is disappointing that the deadline of April 2004 will not be met. As the closure programme proceeds, it is vital that the people concerned are given the opportunity to move into ordinary housing, which is of a non-institutional nature. It must be a place where they have control, that they can make theirs and where they can access ordinary facilities.

Village communities separate people from the general community. They may provide protection and high quality services, but people with a learning disability living in village communities have no opportunity to play a full part in local life. Village communities run the risk of supporting institutional routines. All the evidence suggests this isolation brings with it the potential for misuse of power by those who provide services. There has been much written about the impact on the individual of institutional life. It can stifle independence, and does not allow people to learn from their own mistakes. Segregating people with a learning disability can perpetuate negative images. Are we saying that these people should be separated from the general population?

Mencap believes people with a learning disability should have the necessary information to make a choice about where they live. To secure this a wide a range of options must be available - from staffed group homes through to individual home ownership. Helping a person make a positive choice is very difficult, particularly if they have only experienced institutional care. Providing a real choice takes time and needs to build around different experiences before an informed decision can be made.

Mencap helps people with a learning disability to live their lives in ways they choose and in a home they choose. We provide support to people like Michael and Linda Griffiths, who are in their fifties and both have profound learning difficulties. They have lived in one kind of institution or another for most of their lives. Golden Lane Housing enabled them to move into their own home for the first time. Every step of the way they had a say in what happened to them. They chose how their house was decorated and furnished. These are things that most people take for granted, but for Michael and Linda it was the first time they were able to make such decisions for themselves.

For people who have only ever known life in an institution, life in the outside world can be frightening. What Michael and Linda have achieved proves that people with a learning disability who have been institutionalised can integrate and enjoy the full benefits of society.

Doesn't every person with a learning disability have the right to choose where and how they live? If we segregate people in village communities without giving them this choice, we are taking away this fundamental right."



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