"I used to call him a non-decision-maker-I never do that anymore": parental reflections about training to support decision-making of their adult offspring with intellectual disabilities

ABSTRACT

Purpose: A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters.

Methods: Eighteen parents of people with intellectual disabilities were trained in decision support using

the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training.

Results: The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach.

Conclusions: This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm.