La Trobe
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"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

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Version 2 2022-11-29, 03:52
Version 1 2021-09-21, 23:26
journal contribution
posted on 2022-11-29, 03:52 authored by Christine BigbyChristine Bigby, Jacinta DouglasJacinta Douglas, Elizabeth SmithElizabeth Smith, Terry Carney, Shih-Ning Then, Ilan Wiesel
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.


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Disability and Rehabilitation








Taylor & Francis



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© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (, which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.