Moving from Support for Decision-making to Substitute Decision-making: Legal Frameworks and Perspectives of Supporters of Adults with Intellectual Disabilities
The United Nations Convention on Rights of Persons with Disabilities (UNCRPD) has significantly changed the way our society views models of decision-making for adults with cognitive impairment. The formerly-accepted substitute decision-making models – where a person can legally make decisions for an individual, often guided by the ‘best interests’ principle – are considered less desirable than supported decision-making which prioritises an individual’s ‘will, preferences and rights’. However, disciplinary differences in understandings about what these concepts entail and how they should look in policy, legal and practice frameworks persist.
For many, supported decision-making is experienced through informal support for decision-making through close family, and in the absence of a legal appointment. What this support looks like and whether it can help achieve the aim of greater participation by people with intellectual disability is still being empirically examined. In addition, the circumstances when that support moves into informal substitute decision-making is largely unexplored. It is also unclear whether the reasons for such a shift mirror the legal requirements for the appointment of a formal substitute decision-maker under Australian law.
This paper uses a subset of qualitative data from interviews with parents who act as supporters to adults who have an intellectual disability. The overall aim of the study was to explore the impact of training in applying a practice framework (the La Trobe Support for Decision Making Practice Framework) about effective support for decision-making. We show that promising development is reported from the impact of capacity-building training for supporters, with evidence that the decision-making capabilities of adults with intellectual disabilities can be seen to shift over a period of time and training informal supporters can be effective in moving the dial as to when a supporter finds it necessary to step in and make a substitute decision. However, we also demonstrate that considerations of ‘risk’ and future opportunities for the supported adult are nuanced factors taken into account by supporters who shifted into a substitute decision-maker role and this is not well accounted for in our legal frameworks.
2 Australian Government. 2021. Australia’s Disability Strategy 2021-2031. Department of Social Services.
3 Australian Government. Convention on the Rights of Persons with Disabilities: Declarations and Reservations (Australia), opened for signature 30 March 2007, United Nations, Treaty Series vol.999 p.3 (entered into force 3 May 2008).
4 Bach, Michael. 2017. "Inclusive citizenship: refusing the construction of “cognitive foreigners” in neo-liberal times." Research and Practice in Intellectual and Developmental Disabilities 4 (1): 4-25. https://doi.org/10.1080/23297018.2017.1306794
5 Bartlett, Peter. 2020. "At the Interface Between Paradigms: English Mental Capacity Law and the CRPD." Frontiers in Psychiatry 11 (881): https://doi.org/10.3389/fpsyt.2020.570735
6 Bigby, Christine, Jacinta Douglas, Terry Carney, Shih-Ning Then, Ilan Wiesel, and Elizabeth Smith. 2017. "Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015." Australian Journal of Social Issues 52 (3): 222-240. https://doi.org/https://doi.org/10.1002/ajs4.19
7 Bigby, Christine, Jacinta Douglas, Elizabeth Smith, Terry Carney, Shih-Ning Then, and Ilan Wiesel. 2021. “Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences.” Journal of Intellectual and Developmental Disability https://doi.org/10.3109/13668250.2021.1954481 .
8 Bigby, Christine, Jacinta Douglas, Elizabeth Smith, Terry Carney, Shih-Ning Then, and Ilan Wiesel. 2021. ""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." Disability and Rehabilitation
9 Blake, Meredith, Cameron Stewart, Pia Castelli-Arnold, and Craig Sinclair. 2021. "Supported Decision-Making for People Living with Dementia: An Examination of Four Australian Guardianship Laws." Journal of Law and Medicine 28: 389-420.
10 Booth Glen, Kristin. 2020. "Support Decision-Making From Theory to Practice: Further Reflections on an Intentional Pilot Project " Albany Government Law Review 13: 94-168.
11 Browning, Michelle, Christine Bigby, and 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. https://doi.org/10.1080/23297018.2014.902726
12 Burke, Kathryn M, Sheida K Raley, Karrie A Shogren, Mayumi Hagiwara, and Cristina Mumbardo-Adam. 2018. "A Meta-Analysis of Interventions to Promote Self-Determination for Students With Disabilities." Remedial and Special Education 41 (3): 176-188.
13 Carney, Terry, Christine Bigby, Shih-Ning Then, Elizabeth Smith, Ilan Wiesel, and Jacinta Douglas. 2021. "Paternalism to empowerment: all in the eye of the beholder?" Disability & Society: 1-21. https://doi.org/10.1080/09687599.2021.1941781
14 Carney, Terry, Shih-Ning Then, Christine Bigby, Ilan Wiesel, Jacinta Douglas, and Elizabeth Smith. 2019. "Realising ‘will, preferences and rights’: reconciling differences on best practice support for decision-making?" Griffith Law Review 28 (4): 357-379. https://doi.org/10.1080/10383441.2019.1690741
15 Committee on the Rights of Persons with Disabilities. 2014. General Comment No. 1; Article 12: equal recognition before the law, The Committee on the Rights of Persons with Disabilities: 11th sess, UN Doc CRPD/C/GC/11/, 19 May 2014
16 Committee on the Rights of Persons with Disabilities. 2018. General Comment No. 1 (2014): Article 12: Equal Recognition before the Law: Corrigendum, Paragraph 27, CRPD/C/GC/1/Corr.1, 11th (31 March-11 April 2014) sess, (26 January 2018)
17 Committee on the Rights of Persons with Disabilities. 2013. Concluding Observations on the Initial Report of Australia, 10th sess, UN Doc CRPD/C/AUS/co/1, 21 October 2013.
18 Cukalevski, Emily. 2019. "Supporting Choice and Control—An Analysis of the Approach Taken to Legal Capacity in Australia’s National Disability Insurance Scheme." Laws 8 (2): 8. https://www.mdpi.com/2075-471X/8/2/8
19 Douglas, Jacinta, and Christine Bigby. 2020. "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 42 (3): 434-441.
20 Dunn, Michael. C., Isabel. C. H. Clare, and Anthony. J. Holland. 2010. "Living ‘a life like ours’: support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities." Journal of Intellectual Disability Research 54 (2): 144-160.
21 European Commission. 2021. Union of Equality Strategy for the Rights of Persons with Disabilities 2021-2030. European Union.
22 Grabham, Emily, Didi Herman, Davina Cooper and Jane Krishnadas. 2008. “Introduction” In , Intersectionality and Beyond: Law Power and the Policites of Location edited by E Grabham, D Cooper, J Krishnadas and D Herman. Routledge.
23 Harding, Rosie, and Elizabeth Peel. 2019. "Polyphonic Legality: Power of Attorney Through Dialogic Interaction." Social & Legal Studies 28 (5): 675-697. https://doi.org/10.1177/0964663918803409
24 Harding, Rosie, and Ezgi Taşcıoğlu. 2018. "Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity." Societies 8 (2): 25. https://www.mdpi.com/2075-4698/8/2/25
25 Kohn, Nina, Jeremy A Blumenthal, and Amy T Campbell. 2013. "Supported Decision-Making: A Viable Alternative to Guardianship." Penn State Law Review 117 (4): 1111-1157.
26 Largent, Emily A., and Andrew Peterson. 2021. "Supported Decision-Making In The United States And Abroad." Journal of Health Care Law & Policy 23 (2): 271-296.
27 Mackenzie, C, and N Stoljar. 2000. Relational Autonomy: Feminist Perspective on Autonomy, Agency and the Social Self. Edited by C Mackenzie and N Soljar. New York: Oxford University Press.
28 Marsh, Pauline, and Lisa Kelly. 2018. "Dignity of risk in the community: a review of and reflections on the literature." Health, Risk & Society 20 (5-6): 297-311. https://doi.org/10.1080/13698575.2018.1519115
29 McCallum, Ron. 2020. The United Nations Convention on the Rights of Persons with Disabilities: An Assessment of Australia’s Level of Compliance. Research Report for the Royal Commission into Violence, Abuse, Neglece and Exploitation of People with Disability
30 National Disability Insurance Agency. 2021. National Disability Insurance Scheme Consultation Paper: Supporting you to make your own decisions.
31 NSW Department of Communities and Justice. 2020. Capacity Toolkit: Information for government and community workers, professionals, families and carers in New South Wales. edited by Department of Communities & Justice. New South Wales.
32 Perske, R. 1972. "The Dignity of Risk." In The Principle of Normalization in Human Services, edited by Wolf P Wolfensberger. 194-200. Toronto: National Institute on Mental Retardation.
33 Queensland Government. 2020. Queensland Capacity Assessment Guidelines 2020: A guide to understanding capacity, capacity assessment and the legal tests of capacity under Queensland's guardianship legislation. Department of Justice and Attorney-General. Queensland: Queensland Government.
34 Queensland Public Guardian. 2019. Structured Decision Making Framework. Office of the Public Guardian (Qld).
35 Quinn, Gerard. 2020. "Legal Culture and the CRPD." In Recognising Human RIghts in Different Cultural Contexts, edited by Emily Kakoullis and Kelley Johnson. 19-44. Singapore: PalgraveMacmillan.
36 Shibu, John, Joanne Rowley, and Kerry Bartlett. 2020. "Assessing patients decision-making capacity in the hospital setting: A literature review." Australian Journal of Rural Health 28 (2): 141-148. https://doi.org/https://doi.org/10.1111/ajr.12592
37 Special Rapporteur on the Rights of Persons with Disabilities, Report of the Special Rapporteur on the Rights of Persons with Disabilities (Legal Capacity and Supported Decision-Making, A/HRC/37/56, 37th sess, Agenda Item 3.
38 Szmukler, George. 2019. "“Capacity”, “best interests”, “will and preferences” and the UN Convention on the Rights of Persons with Disabilities." World Psychiatry 18 (1): 34-41. https://doi.org/https://doi.org/10.1002/wps.20584
39 Then, Shih-Ning. 2013. "Evolution and Innovation in Guardianship Laws: Assisted decision-making." Sydney Law Review 35 (1): 133-166.
40 Then, Shih-Ning, Terry Carney, Christine Bigby, and Jacinta Douglas. 2018. "Supporting decision-making of adults with cognitive disabilities: The role of Law Reform Agencies – Recommendations, rationales and influence." International Journal of Law and Psychiatry 61: 64-75. https://doi.org/https://doi.org/10.1016/j.ijlp.2018.09.001
41 Tune, David. 2019. Review of the National Disability Insurance Scheme Act 2013: Removing Red Tape and Implementing the NDIS Participant Service Guarantee.
42 United Nations Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNTS 15 (entered into force 3 May 2008) (‘UNCRPD’).
43 Victorian Office of the Public Advocate 2020. Guardianship Guide: A guide for guardians appointed under the Guardianship and Administration Act 2019. Victoria Office of the Public Advocate (State of Victoria)
44 Victorian Office of the Public Advocate. 2021. Decision Time: Activating the rights of adults with cognitive disability. Victoria.
45 Watson, Joanne, Erin Wilson, and Nick Hagiliassis. 2017. "Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability." Journal of Applied Research in Intellectual Disabilities 30 (6): 1022-1034. https://doi.org/https://doi.org/10.1111/jar.12393
46 White, Ben, Lindy Willmott, and Shih-Ning Then. 2018. "Adults Who Lack Capacity: Substitute Decision-making." In Health Law in Australia, edited by B White, L Willmott and F McDonald. 207-270. Sydney: Thompson Reuters Lawbook
47 Wiesel, Ilan, Elizabeth Smith, Christine Bigby, Shih-Ning Then, Jacinta Douglas, and Terry Carney. 2020. "The temporalities of supported decision-making by people with cognitive disability." Social & Cultural Geography: 1-19. https://doi.org/10.1080/14649365.2020.1829689
48 Wyllie, Aaron, and Bernadette J. Saunders. 2018. "‘Everyone has an agenda’: Professionals’ understanding and negotiation of risk within the Guardianship system of Victoria, Australia." Health & Social Care in the Community 26 (4): 581-589. https://doi.org/https://doi.org/10.1111/hsc.12551