Supported Decision-Making Theory and Practice

This symposium reviews recommendations about supported decision making made by Law Reform Commissions around the world, describes development of an evidence based support for decision making practice framework, and presents nuanced data about implementing the first two steps of the framework.

Article 12 and the NSW guardianship framework: a case study highlighting barriers for people with intellectual disability regarding legal capacity and autonomy of decision-making
Ms Jenna Macnab1,
Professor Christine Bigby1, Professor Jacinta Douglas1
1La Trobe University, Living with Disability Research Centre, Bundoora, Australia

Background:
Over ten years after Australia signed the UN Convention on the Rights of Persons with Disabilities (CRPD) there is still debate about the guardianship framework in NSW and conformity with Article 12’s mandate for equal legal capacity, paramountcy of a person’s rights, will and preferences in decision-making, and supported decision-making. But, with the advent of the National Disability Insurance Scheme (NDIS), the NSW Law Reform Commission’s 2018 Guardianship Report, and the recent announcement of a Disability Royal Commission, the spotlight is on NSW to genuinely embrace Article 12 and autonomy of decision-making for people with intellectual disability.

So what’s taking so long? And what are the issues???

Method:
With reference to relevant academic and other literature, an examination of the NSW Law Reform Commission’s recommendations, a critical analysis of the current NSW guardianship framework, and a review of numerous Australian supported decision-making trials, this presentation will use a case study to reflect on where the tensions exist surrounding Article 12’s implementation in NSW.

Results:
Currently, in NSW, people with intellectual disability face a myriad of potential barriers in exercising their legal capacity and enjoying decision-making autonomy. These barriers start with ambiguities within Article 12, are compounded by the current guardianship framework, complicated due to uncertainty around implementation of supported decision-making, and underscored by societal norms.

Implications:
Unless NSW genuinely embraces Article 12 by radically changing the guardianship framework, including a major education and resource campaign, barriers will still prevent people with intellectual disability from enjoying full legal capacity and autonomy of decision-making.

 

Strategies for supporting people with intellectual disability to have choice and control over their lives?
Dr William Crisp1, Professor Christine Bigby1 , Dr Mary Whiteside1
1
La Trobe University, Living with Disability Research Centre, Bundoora, Australia

Background:
Choice and control for people with disability is a fundamental principle for the National Disability Insurance Scheme (NDIS). Traditional ideas have often led to the denial of the rights of people with intellectual disability to be self-determined. In comparison, more contemporary thinking suggests environmental factors, such as human interdependence enables self-determination. However, little research has explored how these conceptual ideas translate into practice.

Method:
Seven young people with intellectual disability with a network of supporters, enabling them to have a lifestyle reflective of their preferences participated in the study.
In depth interviews and observations were undertaken with the young people, parents and other supporters. Data were analysed utilising constructivist grounded theory to ascertain the strategies to support the young people to have choice and control.

Results:
The theory of guiding self-determination was developed. Central were supporters with a vision of an ordinary life for each young person. They created environments where individual preferences were understood, respected and converted into everyday life while managing inevitable tensions. Critical was the trusting, challenging and nurturing relationship between the young person and their supporters, which enabled them to grow while being supported to have a lifestyle reflective of their preferences.

Implications:
These findings have significant implications for the NDIS. There is the need to acknowledge the considerable support people with intellectual disability need to have choice and control over their lives, to resource network members to provide enabling support and think about how those without strong networks can have this type of support replicated.

 

Recommendations and influence of Law Reform Agencies on supported decision-making
Professor Jacinta Douglas1, Dr Elizabeth Smith1, Professor Christine Bigby1, Emeritus Professor Terry Carney2, Dr Shih-Ning Then3, Dr Ilan Wiesel4
1
La Trobe University, Living With Disability Research Centre, Bundoora, Australia, 2The University of Sydney, Sydney, Australia, 3Queensland University of Technology, Brisbane, Australia, 4The University of Melbourne, Melbourne, Australia

Background:
Article 12 of the UNCRPD places an obligation on member states to ‘provide access by persons with disabilities to the support they may require in exercising their legal capacity’. Law reform agencies in various countries have recommended that laws be changed to allow for forms of supported decision-making to be legally recognised.

Method:
This paper identifies the contribution of Law Reform Agencies reports and recommendations to the evolving body of knowledge in relation to supported decision-making. It analyses the rationales for recommendations favouring the introduction of forms of legally recognised supported decision-making and the types of legal models of supported decision-making being recommended by Law Reform Agencies.

Findings:
To date, translation of this concept into law has been limited. However, Law Reform Agencies, tasked with reviewing legal decision-making schemes are increasingly recommending incorporation of legally recognised supported decision-making measures.

Implications:
The rationales in Law Reform Agency reports provide an understanding of the pros and cons of supported decision making schemes and balance between safeguard and rights.


Biography:

Jenna Macnab is a PhD student supervised by Professor Christine Bigby and Professor Jacinta Douglas from the Living with Disability Research Centre at La Trobe University. Her PhD aims to examine the current decision-making practices of guardians and financial managers in NSW.

Dr William Crisp is an online facilitator in School of Allied Health, Human Services and Sport, La Trobe University and a Research Officer in Living with Disability Research Centre at La Trobe University. He also works for National Disability Services as a policy and project officer on the Ticket to Work Initiative. Dr Crisp completed his PhD in 2018 on the processes facilitating the self-determination of people with intellectual disability.

Professor Christine Bigby is Director of the Living with Disability Research Centre at La Trobe University. She has won the ASID Research prize three times since 1993. She has published 6 book, 35 book chapters, over 135 journal articles and numerous research reports. She is editor of the Journal of Policy and Practice in Intellectual and Developmental Disabilities.