Over one million Australians have some form of cognitive impairment due to intellectual disability or acquired brain injury and require significant levels of support for decision-making. To date, the range and quality of support available has been poor, often tending toward undue paternalism, with deleterious consequences for the individual’s sense of identity and quality of life. Efforts to rectify this situation have recently been championed by law reform commissions, which have focused on establishing new legal structures for support with decision-making. However, the crucial issue of how decision-making support is delivered in practice in terms of quality and effectiveness remains in urgent need of attention. The aim of this article is to describe four empirically based propositions that characterise effective decision making support; orchestration by the primary supporter; commitment to person; support principles; and a repertoire of strategies that can be used flexibly depending on the type and context of particular decisions. These propositions are based on evidence from a series of qualitative studies conducted by the authors. Results of these studies enabled the identification of factors that underpin delivery of effective support and can be utilised to develop capacity-building education programs for people providing decision-making support to those with cognitive disability, either intellectual disability or acquired brain injury, which will substantially improve the quality of support given.
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.
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.
Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001−2015 was conducted. Findings suggest that existing research rarely uses definitions of participation, but does examine participation across multiple domains and addresses issues of access and inclusion. Less focus was placed on individual aspects of participation such as meaning, responsibility, and choice. Based on the findings, implications for future research and practice are provided.
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.