Research in Shared-Life Communities Stuart Cumella, 2015

Overview of research Most research has compared dispersed housing schemes with hospital care (often before and after resettlement). Only two studies have systematically compared quality of life in shared-life communities and other types of residence: HARC study by Emerson et al in 1990s and similar research in Ireland by Fahey et al (2010). Both used wide range of standardised measures to compare residents in ‘village communities’, dispersed housing, and hospital campuses. Very thorough studies with similar results.

Samples HARC sample of 500 people living in 3 shared-life communities, 5 NHS residential campuses and 10 dispersed housing schemes (max 8 residents/home). Selected from units with ‘best practice’. Irish sample of 29 people in two Camphill communities, compared with earlier data collected by Walsh et al of 64 people living in group homes and 60 on hospital campus sites. Found the sample in shared-life communities was the least disabled and people in hospital campuses the most disabled. No difference in prevalence of mental illness or autism. Higher proportion in hospital campuses had behaviour problems.

Results The most homely accommodation and least institutional settings were in village communities and dispersed housing. Village communities more likely to involve residents in care-planning, with emphasis on vocational skills and education. Contacts with professionals and regular health checks highest in village communities. Wide range in cost/resident, but highest in hospital campuses. When samples matched for mental health/behaviour problems and severity of disability, village communities were cheaper.

HARC Results: quality of life IndicatorBest Performing Individual choiceVillage communities + dispersed housing Family contactVillage communities Social networksVillage communities (contacts with staff and other people with learning disability) Dispersed housing (contacts with non-disabled people) Physical activityVillage communities + dispersed housing SafetyVillage communities EmploymentDispersed housing (employment) Village communities (hours of scheduled activities) Dispersed housing (leisure activities) NHS residential campuses (day centres) SatisfactionNo clear differences

Studies of shared-life communities Results show that the quality of life of people with a learning disability is determined not by the size of their residence, but by what goes on inside it. Very little research on social relationships in residential care because of problems from ethical committee. Randell and Cumella (2009) interviewed people with a learning disability in Botton Village (Camphill), who liked 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.

Why are shared-life communities successful? High levels of meaningful employment. Lack of the barriers to formal employment results in wide range of work that contributes to the economy of the community. Opportunities for friendship. Facilitated by availability of several other people with a learning disability and by the sense of personal security. Long-term relationships. Living in extended families enables people with a learning disability and their supporters to acquire 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. Long-term relationships with staff may now be less common in dispersed housing because of cost pressures.

Conclusions Shared-life communities are therefore an appropriate option for people with a learning disability who prefer this lifestyle. “... given that dispersed housing schemes and village communities appear to be associated with different patterns of benefit, people with intellectual disabilities should be free to choose between these two options” (Emerson et al). Should avoid the ‘social engineering fallacy’ that if one type of provision is on average better for a particular group of people, then all members of that group should receive this type of provision.

Implications The choice of how and where to live is defined as a right under the United Nations Convention on the Rights of Disabled People. “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. It should therefore be respected by public agencies in how they assess, commission, fund and regulate residential support. Choice requires a diversity of things to choose between.