A shared life

On Tuesday last week, I spoke to the All-Party Disability Interest Group in Parliament about shared-life communities for people with a learning disability (intellectual disability). This was organised by the Alliance for Camphill. For the record, I include a synopsis of my talk, on the research evidence for shared-life communities.

"Public policy in the UK has sought to attain a fulfilling life for people with a learning disability by placing them in dispersed housing schemes after they leave their family home or hospital. These are houses or flats mainly in urban settings, with support staff employed by private and voluntary-sector agencies to work in the home or visit on a regular basis. This became the dominant type of accommodation for people resettled from the former mental handicap hospitals, although some were also placed in ‘residential campuses’ of homes managed by the NHS on the sites of the former hospitals. By contrast, few former inpatients moved to intentional communities based on shared-life principles. These are a diverse group of settlements and networks in which ‘co-workers’ (Camphill) and ‘assistants’ (L’Arche) are motivated by a personal calling to work alongside people with a learning disability, sharing their homes and family life. Shared-life communities of this kind vary in size and location (rural, small town or urban).

"However, research which has compared the quality of life of people with a learning disability in different types of housing has found that shared-life communities have similar outcomes for their residents as dispersed housing schemes. In some respects (especially friendships with other people with a learning disability, employment and personal safety), shared-life communities are superior. Shared-life communities also provide a better quality of life on almost all measures than the NHS-managed residential campuses, even though both characteristically comprise clusters of small houses dispersed across a shared landscape. This indicates that the size of a residence and its location is less important in determining quality of life than the pattern of social relationships within each residence or network.

"Studies which have explored the distinctive pattern of social relationships that exist in shared-life communities have found that residents appreciate the diverse range of employment and leisure opportunities, their wide friendship network with other people with a learning disability, and their sense of being part of a community in which they have an important part to play through shared decision-making and rituals. Friendship is facilitated by the availability in the community of several other people with a learning disability and by the sense of personal security it provides. Living in extended families with co-workers/assistants enables people with a learning disability and their supporters to acquire and build skills in each others’ pattern of communication - the essential step if a person with a learning disability is to learn of the world and express choices about what they want to do in it.

"Shared-life communities are therefore an appropriate option for people with a learning disability who prefer this lifestyle. The choice of how and where to live has in the past often been denied to people with a learning disability, but is defined as a right under the United Nations Convention on the Rights of Disabled People. It should therefore be respected by public agencies in how they assess, commission, fund and regulate residential support."

See also: Denying disability