Supported Decision-Making: An Alternative to Guardianship in New Zealand Dementia Care

Abstract

Global trends indicate that the prevalence of dementia is expected to increase from 57 million cases in 2019, rising to more than 150 million cases by 2050 (Nichols, et al., 2022). It has been argued that a model of supported decision-making is ideal for those who suffer from cognitive and functional impairments who might struggle with their personal autonomy at varying levels from time to time (Peterson, Karlawish & Largent, 2020). New Zealand ratified the Convention on the Rights of Persons with Disabilities and its subsequent optional protocol in 2008 and 2016 respectively (Ministry of Justice, 2020). Article 12 of the Convention grants persons with disabilities, including mental health disabilities, the right to equal recognition before the law and legal capacity on an equal basis with all people. New Zealand has a Code of Health and Disability Services Consumers’ Rights, which establishes the rights of health service users and the obligations of providers. The code is provided for under the Health and Disability Commissioner Act 1994. This code also applies to those responsible for providing residential care for people living with dementia (HDC, 2023). The code, specifically at Right 7, states that health services may be provided to the recipient only if they have made an informed choice and have freely given their informed consent. On 12 May 2014, the United Nations Committee on the Rights of Persons with Disabilities asked Aotearoa New Zealand to explain whether there were initiatives being taken to replace the current system of substituted decision-making (guardianship) with one of supported decision-making as required by Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2014). Prior to the combined second and third periodic review on the CRPD, New Zealand was asked to report on progress made to change laws on supported decision-making, specifically to conform fully with the requirements of Article 12 and empower people with intellectual disabilities to give and withdraw informed consent (UN, 2019). Obviously from this request for information, New Zealand had failed to make progress on the recommendation of the 2014 report to replace substituted decision-making with a supported model (UN, 2018).By September 2022, on publishing the conclusions of the combined second and third periodic reviews, the Committee observed that there remained a lack of progress in replacing the guardianship model of substitute decision-making with a supported decision-making model making for people with intellectual disabilities (UN, 2022). From 2014 through to 2022, the issue of New Zealand not having a system that allows supported decision-making has persisted. This dissertation aims to examine models of supported decision-making available and the benefits and drawbacks of each, as well as what possible alternatives might be on offer. It will look at legislation and regulations from around the world where supported decision-making has been adopted to examine how difficult it might be for New Zealand to adopt a similar regime to comply fully with Article 12 of the CRPD.