Supporting People with Cognitive Disabilities in Decision Making - Processes and Dilemmas Report uri icon

abstract

  • The right to make one’s own decisions is a central premise of the United Nations Convention on the Rights of Persons with Disability, and intrinsically linked to quality of life, health and wellbeing. Sources of support include legal guardians as substitute decision makers or informal support through family and service providers. This study explored the processes and dilemmas associated with supporting people with cognitive disabilities in decision making. In-depth interviews and focus groups were held with 24 participants; including family members, workers in disability support services and legal professionals. Data was analysed using an inductive thematic approach. Participants reported supporting people with intellectual disabilities in decision making as a complex, dynamic and frequently chaotic process. Relationships, neutrality, and tailoring support to the individual were fundamental to the process. Remaining neutral, managing conflicting perspectives amongst differing supporters, balancing rights with risk and best interests, and resource constraints were amongst the many associated dilemmas. Insights obtained provide important knowledge to inform training and practice. The findings also highlight the need for further research in this area, particularly in relation to ‘what works’ in support for decision making for people with cognitive disability.

publication date

  • 2015