Knowledge Library

Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research

Abstract  This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.

Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities

As more individuals with intellectual/developmental disabilities are physically included in community life, in schools, neighborhoods, jobs, recreation, and congregations, the challenge of going beyond physical inclusion to true social inclusion becomes more apparent. This article summarizes the status of the research about community participation and social inclusion, summarizes some debates and points of contention, notes emerging research issues, and highlights needed areas of research. It is clear that most research on these topics has been conducted with individuals who are in paid formal services, and there are great needs for understanding the community participation of individuals who live on their own or with their families, as well as researching social inclusion by focusing on the attitudes and experiences of community members themselves, not just individuals with disabilities and paid providers.

The effect of different types of employment on quality of life

Despite research that has investigated whether the financial benefits of open employment exceed the costs, there has been scant research as to the effect sheltered and open employment have upon the quality of life of participants. The importance of this research is threefold: it investigates outcomes explicitly in terms of quality of life; the sample size is comparatively large; and it uses an established and validated questionnaire.
One hundred and seventeen people with intellectual disability (ID) who were employed in either open or sheltered employment by disability employment agencies were interviewed. Quality of life was assessed using the Quality of Life Questionnaire. After making an initial assessment to see whether the outcomes achieved depended on type of employment, quality of life scores were analyzed
controlling for participants’ level of functional work ability (assessed via the Functional Assessment Inventory).
The results showed that participants placed in open employment reported statistically significant higher quality of life scores. When the sample was split based upon participants’ functional work ability, the type of employment had no effect on the reported quality of life for participants with a low functional work ability. However, for those participants with a high functional work ability, those in open employment reported statistically significantly higher quality of life.
The results of this study support the placement of people with ID with high functional work ability into open employment. However, a degree of caution needs to be taken in interpreting the results presented given the disparity in income levels between the two types of employment.

Towards the Prevention of Behavioural and Psychiatric Disorders in People with Intellectual Disabilities

Intervention for behavioural and psychiatric disorders in people with intellectual disabilities often only takes place once these conditions are well established and more resistant to change. As an alternative, this paper promotes a public health prevention model and maps out opportunities for intervention at primary, secondary and tertiary levels. The resulting model is partly derived from generic research into these issues and partly on specific evidence on interventions for people with intellectual disabilities; it also contains more theoretical considerations. The additional research that is necessary to demonstrate the efficacy of the interventions identified is also considered. Central to this proposal is a greater integration of issues for people with intellectual disabilities within much broader policy and research agendas.

The Concept of Quality of Life as Framework for Implementing the UNCRPD

Societal views on the rights of persons with disabilities have changed over the last few decades. Evolutions are reflected in international conventions, as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) developed to guide policies and practices. However, knowledge about the implementation of the Convention remains limited. In addition, another important construct, quality of life (QOL), has gained increasing prominence in the field of disability. This construct has evolved from a sensitizing notion to a measurable construct that provides a framework to assist organization and systems transformation.
The present research focused on the implementation of the UNCRPD articles to assist organizations and systems in the support provision practice. The study is a preliminary step toward implementation, looking for consensus on cross-culturally referenced indicators of QOL outcomes. The methodology chosen to find cross-cultural consensus was an international modified Delphi study to determine the relation and alignment among UN Convention articles, QOL domains, and measurable indicators. A total of 153 experts (self-advocates, professionals, family members, academics, and experts in law) from 11 countries evaluated the indica-
tors. The Delphi study resulted in finding at least one indicator per convention article/QOL domain pairing. Thus, an international pool of cross-cultural indicators was identified to assist the implementation of the Convention articles. The study provides a first exploration of using the QOL framework to implement the UNCRPD. Although international indicators have been found per convention article/QOL pairing, challenges exist in regard to the further translation process into practice between policy and research, and vice versa. Efforts should continue to determine not only the relations among convention articles and measurable indicators, but also associated strategies for realizing the aim of the Convention in local policies and practices.