Knowledge Library

Factors that Underpin the Delivery of Effective Decision-making Support for People with Cognitive Disability

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.

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.