Support for decision-making
What is support for decision-making?
Just as people who use a wheelchair need a ramp to access a building, many people with cognitive disabilities need support to be able to make decisions and determine their own lives. Supported decision making is the practice of providing support to people with cognitive disabilities to be able to make decisions.
Why is support for decision-making important?
The right to make decisions about one’s own life is a fundamental right within the United Nations Convention on the Rights of Persons with Disabilities and a central aim of contemporary disability policy. However, there is a long history of people with disabilities being denied the right to make decisions for themselves.
Most people require support when making decisions about their lives. They may talk to friends and family, or seek support from professionals in relation to decisions about their health, finances, or career. Being able to make all kinds of decisions for ourselves is important for our mental health and well-being and increases self-determination and agency over our own lives.
People with cognitive disabilities (including intellectual disability and acquired brain injury) benefit from making their own decisions. Oftentimes, this requires support from other people.
"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." (Douglas, Bigby, Knox & Browning, 2015, p. 37)
The National Disability Insurance Scheme (NDIS) means that people with cognitive disability will be required to make decisions about the services they use and the kinds of care that they receive. Within this new climate decision-making is particularly important.
Effective decision-making support for people with a cognitive disability
Professor Christine Bigby1, Professor Jacinta Douglas, Emeritus Professor Terry Carney2, Dr Shih-Nhing Then3, Dr Ilan Wiesel4, Dr Elizabeth (Lizzie) Smith1, Ms Lucy Knox1
Academics at La Trobe University, The University of Sydney, The University of New South Wales, and Queensland University of Technology, have developed a training program and support package for people providing support for decision-making to a person with a cognitive disability.
This training program has been piloted and now requires trialling.
In order to explore the effectiveness of this training program, the researchers are seeking people who provide support for decision-making along with the person they support to take part in this research.
Visit the Effective decision-making support page for more information or to get involved in the training program.
Funders and partners
Australian Research Council Linkage Grant
1LaTrobe University, 2Univeristy of Sydney, 3Queensland University of Technology, 4University of New South Wales, Endeavour Foundation, Victorian Office of the Public Advocate, Queensland Office of the Public Advocate, Melbourne City Mission, NSW Department of Family and Community Services, Queensland Mental Health Commission, Inclusion Melbourne, NSW Office of the Public Guardian, Queensland Public Trustee, Summer Foundation, NSW Trustee and Guardian, Queensland Office of the Public Guardian.
Douglas, J., & Bigby, C. (2018). Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability. Disability and rehabilitation, 1-8.
Production of educational materials and resource guide for supported decision making
Professor Christine Bigby and Professor Jacinta Douglas
This is a project to develop a framework for supported decision making for people with intellectual disability and training materials for staff at Kanangra an institution in NSW.
Funders and partners: New South Wales Department of Family and Community Services ($250,000)
Research duration: June 2016
Understanding and supporting the decision-making needs of adults with severe traumatic brain injury
Lucy Knox (PhD Researcher), Professor Jacinta Douglas and Professor Christine Bigby
For people with cognitive disabilities, being able to make decisions not only requires having their rights acknowledged and upheld, but also having access to support that enables participation. To date, there has been limited investigation into how people with traumatic brain injury (TBI) and those in their social support network participate in the decision-making process. This knowledge is required to ensure that people with TBI have access to decision-making support that meets their needs and supports their participation.
This is the first body of research to simultaneously explore the experiences of adults with TBI and those around them in making decisions about life after injury. It highlights the critical role that supporters play in supporting decision-making participation and provides guidance for those supporting adults with TBI regarding how they can maximise the person’s participation.
The aim of this research was to explore the experiences of adults with severe TBI and those around them in making decisions about their lives after injury in order to inform practice.
We found that support in decision making always involved other people and was never done solely by the individual. The process was also influenced by a person’s environment, view of themselves, knowledge of decision-making processes, and their ability to give and receive support.
In addition, several factors were identified that supported a positive support relationship, including knowing the person well, understanding the impact of the brain injury and taking a positive approach to risk.
Based on these findings, recommendations for clinical practice have been developed.
La Trobe University Postgraduate Scholarship, Victorian Brain Injury Recovery Association & East Kew Branch of the Community Bendigo Bank Research Scholarship.
Completed August 2016.
Presentations and publications
- Knox, L., Douglas, J., & Bigby, C. (2013). Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability and Rehabilitation, 35(22), 1926-1932. doi: 10.3109/09638288.2013.766270
- Knox, L., Douglas, J., & Bigby, C. (2015). Becoming a decision-making supporter for someone with acquired cognitive disability following TBI. Research and Practice in Intellectual and Developmental Disabilities. Advance online publication. doi: 10.1080/23297018.2015.1077341
- Knox, L., Douglas, J., & Bigby, C. (2015). ‘The biggest thing is trying to live for two people’: Spousal experiences of supporting decision-making participation for partners with TBI. Brain Injury, 29(6), 745-757. doi: 10.3109/02699052.2015.1004753
- Douglas, J., Bigby, C., Knox, L., & Browning, M. (2015). Factors that underpin the delivery of effective decision-making support for people with cognitive disability. Research and Practice in Intellectual and Developmental Disabilities, 2(1), 37-44. doi: 10.1080/23297018.2015.1036769
- Douglas, J., Drummond, M., Knox, L., & Mealings, M. (2015). Rethinking social-relational perspectives in rehabilitation: Traumatic brain injury as a case study. In K. McPherson, B.E. Gibson, A. Leplege (Eds.), Rethinking rehabilitation: Theory and practice (pp.137-162). Boca Raton, FL: CRC Press.
- Knox, L., Douglas, J. M., & Bigby, C. (2016). “I won't be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychological Rehabilitation, 26(2), 236-260. doi:10.1080/09602011.2015.1019519
- Knox, L., Douglas, J., & Bigby, C. (2016). “I’ve never been a yes person”: Decision-making participation and self-conceptualisation after severe traumatic brain injury. Manuscript under review.
The process of supported decision-making: a Canadian model
Michelle Browning (PhD Researcher), Professor Christine Bigby and Professor Jacinta Douglas.
While supported decision making is recognised as central to enabling the rights of people with disabilities relatively little is known about how to provide support for decision making. This research contributes to the small body of knowledge exploring what the process of supported decision making looks like in practice.
This research aims to learn from the experiences of seven people with intellectual disabilities and their supporters living in Canada who engage in supported decision making. It seeks to understand the process of supported decision making by talking to participants and observing their decision making in practice.
An analysis of the research data suggests the process of supported decision making emerged from the dynamic interaction of a number of factors:
- the individual attributes and experiences the person and their supporter brought to the process
- the nature of their relationship and the proposed decision
- the environment in which decision making occurred.
In the context of these four factors the person making the decision expressed their will or preferences which were perceived by the supporter and responded to in a variety of ways.
This research will develop a theory which describes the process of supported decision making observed in Canada.
Expected completion date: December 2016.
Presentations and publications
- Michelle Browning, Christine Bigby & Jacinta Douglas (2014) Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice, Research and Practice in Intellectual and Developmental Disabilities, 1:1, 34-45, DOI:10.1080/23297018.2014.902726