Paternalism to empowerment: All in the eye of the beholder?

Professor Terry Carney1, Professor Christine Bigby2, Dr Shih-Ning Then3, Dr Elizabeth Smith2, Dr Ilan Wiesel4, Professor Jacinta Douglas

1University of Sydney, Sydney, Australia, 2La Trobe University, Australia, 3Queensland University of Technology, Australia, 4The University Melbourne, Australia

Background
The aim of this study was to explore decision support practices to determine whether, using the Convention on the Rights of Persons with Disabilities (CRPD) as the benchmark, it is possible to identify ‘purchase points’ for assessing the degree of shift from paternalism towards empowerment of the person supported.

Method
A social constructionist perspective was used, and data were collected through in-depth interviews with 55 dyads of a decision-maker with intellectual disability and their decision supporter. The interviews explored decision support practices of supporters and experiences of decision-making by the people with intellectual disabilities. Data were analysed using grounded theory methods.

Results
The study found no clear basis for developing objective ‘outcomes’ measures to demonstrate compliance by decision supporters with the CRPD objectives of empowering the person supported. Instead, the findings demonstrated the nuanced and subjective character of empowerment which favoured focussing on participation by the person supported and self-reflection and deliberation by the person providing support as indictors of an empowering approach to decision support.

Implications
The study supports strategies for realising CRPD goals of supported decision making that concentrate on building the capacity and training supporters. Such training should concentrate on supporters increasing participation of the person supported and encouraging self-reflection and deliberation by supporters on how best to wisely interpret the will and preferences of the person supported.


Biography:

Professor Carney is an Emeritus Professor in the Law School of Sydney University.