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.
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.
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.