NDIA Accountability Project

Supported Decision-Making across Service Systems for People with Intellectual Disability, Acquired Brain Injury, Mental Health Conditions, and Aged Dementia

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Submission No 20

SUPPORTED DECISION-MAKING IN NSW

Organisation: Prof. Shih-Ning Then, Dr Julia Duffy, Emeritus Prof. Christine Bigby, Emeritus Prof. Terry Carney, Dr Craig Sinclair and Dr Sam Boyle

Date Received: 13 March 2026

The Honourable Mr Cameron Murphy, MP Chair, Committee on Ageing and Disability NSW Parliament

13 March 2026

Dear Mr Murphy,

We wish to make a submission to the Committee’s inquiry into supported decision-making in NSW (‘the Inquiry’) (see Attachment).

We are a cross-disciplinary group of researchers who, both together and separately, conduct research, publish literature and develop policies and training on supported decision-making for people with intellectual disability, acquired brain injury, mental health conditions and aged dementia and also have practice experience in those areas. Our collective disciplines are across law, social work and psychology.

The Inquiry’s terms of reference are very broad, and the material published on this topic has become voluminous. For this reason, we have focused our submission on the recommendations made in three key documents which include extensive references to further materials on more targeted issues. They are:

  • New South Wales Law Reform Commission, Review of the Guardianship Act 1987 (Report 145, 2018) (‘NSWLRC Report’);1
  • Bigby, C, Carney, T, Then, S-N, Wiesel, I, Sinclair, C, J Douglas and J Duffy, Diversity, Dignity, Equity and Best Practice: A Framework for Supported Decision-Making (Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, 2023). Diversity, dignity, equity and best practice: a framework for supported decision-making | Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (‘DRC Research Report’);2 and
  • Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Final Report (2023) (‘DRC Final Report’).3

Our input focuses on TOR (b) — ‘barriers to implementing supported decision-making models’ across service systems. While the DRC Final Report incorporates most of our recommendations made in the DRC Research Report, it largely missed the opportunity to emphasise the need to embed supported decision-making practice across service systems and workforces. We refer you to the ‘principled approach’ to supported decision-making proposed in the DRC Research Report, which places significant emphasis on a cross-sectoral approach and on building practice capacity.

Should you have any queries or seek to speak to any members of our team, Professor Shih-Ning Then redacted and Dr Julia Duffy redacted will be our main contact points.

1 New South Wales Law Reform Commission, Review of the Guardianship Act 1987 (Report 145, 2018) (‘NSWLRC Report’).
2 Christine Bigby et al, Diversity, Dignity, Equity and Best Practice: A Framework for Supported Decision-Making (Royal Commisison into Violence, Abuse, Neglect and Exploitation of People with Disability, 2023) (‘DRC Research Report’).
3 Royal Commission into Violence Abuse Neglect and Exploitation of People with Disability, Final Report (2023) (‘DRC Final Report’).

Yours sincerely,

redacted

Prof. Shih-Ning Then, Dr Julia Duffy,

With: Emeritus Prof. Christine Bigby, La Trobe University, Living with Disability Research Centre, Emeritus Prof. Terry Carney, University of Sydney Law School, Dr Craig Sinclair, University of New South Wales, School of Psychology, Dr Sam Boyle, QUT, Australian Centre for Health Law Research, School of Law

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Attachment

Submission to Parliament of NSW – Committee on Ageing and Disability

Contents

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(a) The lived experience of people seeking to access appropriate support to make decisions for themselves

‘Supported decision-making means you’re in control of your decisions but still getting support while doing it’ (self-advocate)4

’…if everyone’s listening to me, then I’m much likely to be living the life that I want to live and be free of those abuses’ (self-advocate)5

‘If you have the right supports, you can gain confidence…’ (self-advocate)6

‘Without supported decision-making there have been times that supporters have treated me like a child, telling us what to do, not as an independent person. We can feel like we’re looked down upon a bit’ (self-advocate)7

‘…it was extra time and questioning me in all different ways to make sure I understood it, and open questions for me to come back to him to basically mirror what he said and understand it’ (self-advocate)8

Historically, people with disability have been excluded from the development of laws and policies that regulate their lives. There is now growing recognition of the importance of involving people with lived experience in the design of relevant legal and policy frameworks. The Disability Royal Commission recommended that Commonwealth entities be required to consult people with disability, including disability representative organisations, when developing and evaluating policies, laws and programs, and when planning new initiatives.9 We believe this applies to any development of laws and programs affecting people with disabilities, both as a matter of democratic representation, and to ensure the effectiveness of the resulting policies.

We made recommendations on the inclusion of people with cognitive disability in policy development on supported decision-making in our DRC Research Report. We found that more research is required to identify effective methods for including people with cognitive disability in advisory and co-design initiatives. This includes determining how processes should be adapted to create genuinely inclusive environments and identifying the skills and strategies necessary to provide tailored support that enables meaningful participation.

However, for supported decision-making to be effective for the people it is designed to assist, we concluded that it is essential for people with cognitive disability to be included in design processes. We recommended that people with cognitive disability—and the supporters of people with severe cognitive disability— have a significant role in consultation and design processes relating to supported decision-making reforms and initiatives. We note that recent studies demonstrate the significant potential of co-design and co-leadership processes led by people with lived experience of disability.10

4 DRC Research Report 381. 5 DRC Research Report 384. 6 DRC Research Report 386. 7 DRC Research Report 387 8 DRC Research Report 399. 9 Recommendation 4.11 10 Sian Anderson and Christine Bigby, ‘‘Nothing about us without us’: Including lived experiences of people with intellectual disabilities in policy and service design’ in Christine Bigby and Alan Hough (eds), Disability Practice: Safeguarding Quality Service Delivery (Palgrave MacMillan, 2024) 225-246.

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See further below under (b) point 8 for comments on inclusion of people with cognitive disabilities on boards; and under TOR (g) point 1 for our recommendations on further expertise needed in the co-design process.

1. Guardianship Act 1987 (NSW)

The UN Convention on the Rights of Persons with Disabilities (‘CRPD’) was adopted by the UN in 2006 and ratified by Australia in 2008 and is currently driving international and Australian law reforms to introduce supported decision-making. While guardianship legislation in most other Australian jurisdictions has been amended to greater or lesser extents to implement the right to legal capacity in article 12 CRPD,11 there have been no changes to the Guardianship Act 1987 (NSW) (‘GA NSW’) despite recommendations for change made in 2014 by the Australian Law Reform Commission’s Equality, Capacity and Disability in Commonwealth Laws: A Final Report;12 in 2018 by the NSWLRC Report and in 2023 in the DRC Final Report. We are also aware that a Working Group13 was established by the NSW government to consider the NSWLRC Report together with the recommendations of the Disability Royal Commission and that it has made a suite of recommendations for implementation. We also draw your attention to the DRC Research Report on supported decision-making prepared by the authors, having been commissioned by the Disability Royal Commission and from which the DRC Final Report drew on substantially in formulating its recommendations.

Because the GA NSW governs decision-making for adults14 with impaired capacity across legal, financial, health, education, employment and care systems, the absence of any acknowledgement or promotion of supported decision-making in the GA NSW is a major impediment to implementing supported decision-making in all of those systems. Key inhibitors in the GA NSW are:

  • The requirement that a financial manager must be appointed if it would be in the adult’s ‘best interests’ – the latter being a paternalistic test inconsistent with human rights principles.15
  • The requirement that a guardian may be appointed in circumstances where an adult is ‘incapable of managing his or her person’16 – rather than in a more limited situation where an actual decision needs to be made and without considering whether or not the adult wants to have a guardian or manager appointed;17
  • The ‘paramount’ principle that everyone exercising functions under the GA NSW – including guardians, financial managers, ‘persons responsible’ and the New South Wales Civil and Administrative Tribunal (‘NCAT’) – must promote the ‘welfare and

11 Cameron Stewart, Supported Decision-Making for People Living with Dementia in NSW (NSW Parliamentary Research Service, October 2025) 26-28. 12 Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws: A Final Report (Australian Law Reform Commission, 2014). 13 Stewart (n 11) 21-22. 14 Note however that a guardianship order can be made for a 16 or 17 year old, and medical decisions made for 16 or 17 years by persons responsible. GA NSW ss 15(1)(a), 34. 15 Guardianship Act 1987 (NSW) s 25G (‘GA NSW’); Stewart (n 11) 17-18. 16 GA NSW s 3. 17 See eg Guardianship and Administration Act 2019 (Vic) s 31.

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interests’ of the adult.18 This principle is equivalent to the paternalistic ‘best interests’ principle which is inconsistent with human rights frameworks for decision-making which demand that decisions be made that prioritise an adult’s own will and preferences, rather than on what others think may be best for the adult;19

  • The absence of any references to supported decision-making or support for decision-making in the legislation. In particular, the absence of a statutory obligation to attempt supported decision-making before turning to substitute decision-making. This manifests currently as there is:
    • no obligation for NCAT to consider whether an adult could have decision-making capacity to make a decision with adequate supports, before being allowed to appoint a guardian or financial manager;
    • no obligation for a guardian, financial manager or person responsible to support an adult to make a decision before making a substitute decision for them;
    • where a person is unable to make their own decisions with support, there is no obligation for a guardian, financial manager or person responsible to make a decision that accords with the adult’s will and preferences if known, or if not known, their ‘likely’ will and preferences;20
    • no ability to have supporters formally recognised in legislation – as was recommended by the NSWLRC Report.21
  • Guardianship orders allow for guardians to have ‘custody’ of a person, contrary to a human rights model that allows for the guardian to only make decisions for the person.22

We recommend that to eliminate or reduce the above barriers, a new Act be passed incorporating the largely reiterative and cumulative recommendations of: the ALRC’s Equality, Capacity and Disability in Commonwealth Laws: A Final Report,23 the NSWLRC Report, the DRC Research Report,24 the recommendations of the NSW government established Working Group and the DRC Final Report.25

In particular, a statutory obligation to attempt supported decision-making should be recognised in the legislation before turning to substitute decision-making and, if necessary, decisions should be made by guardians and managers (or ‘representatives’) and persons responsible that accord with an adult’s will and preferences or if unknown, a best interpretation of what their will and preferences would be. If it is not possible to make a ‘best interpretation’ then a decision should be made that promotes the person’s personal and social wellbeing.

In the very limited circumstances where a person’s expressed or best interpretation of their will and preferences involve risk of serious, imminent physical or financial harm with lasting consequences to themselves (including civil or criminal liability), and that person is unable to understand that risk, even with support, a substitute can make a

18 GA NSW s 4 19 Stewart (n 11) 7. 20 However, research indicates that some NCAT members do have regard to article 12 CRPD and incorporate some of the principes in their decision-making: Jenna Macnab, ‘Understanding the Substitute Decision-Making Process and Practice of New South Wales Public Guardians in the Context of Article 12 of the United Nations Convention on the Rights of Persons with Disabilities’ La Trobe, 2024). 21 NSWLRC Report Recommendation 7 22 GA NSW ss 16(2), 21. 23 Australian Law Reform Commission (n 12). 24 Especially Recommendation 1. 25 Recommendations 6.4 to 6.10.

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decision using as a last resort a test of placing the person’s personal and social wellbeing at the centre.26

The recommendation of the NSWLRC Report (rec 5.4) is largely in line with our position and provides a potential legislative model for consideration:

The new Act should state that anyone exercising functions under it should approach the task of giving effect to a person’s will and preferences wherever possible, as follows:

(a) First, to be guided by the person’s expressed will and preferences (including a valid advance care directive) wherever possible.

(b) If these cannot be determined, to be guided by the person’s likely will and preferences. These may be determined by the person’s previously expressed will and preferences, and by consulting people who have a genuine and ongoing relationship with the person and who may be or have been aware of the person’s will and preferences.

(c) If these too cannot be determined, to make decisions that promote the person’s personal and social wellbeing.

(d) If giving effect to a person’s will and preferences creates an unacceptable risk to the person (including the risk of criminal or civil liability), to make decisions that promote the person’s personal and social wellbeing.

(e) Regardless, a person’s decision to refuse healthcare in a valid advance care directive must be respected if that refusal is clear and extends to the situation at hand.

2. Advance Care Directives – no existing legislation in NSW

As there is no legislation in NSW governing advance care directives,27 the common law test of capacity applies. There is no requirement at common law that supported decision-making should be attempted before any determination of incapacity.28 Any new legislative reforms to recognise statutory advance care directives should change this position.

3. Enduring guardians and enduring attorneys

As above for advance care directives, any introduced statutory obligation to attempt supported decision-making before a determination of incapacity, and any new general principles in the legislation reflecting human rights should apply to both enduring guardians and enduring attorneys. In particular, when making a substitute decision within their authority, they should be making decisions which accord with the adult’s will and preferences or if not known, a best interpretation of their will and preferences.29 In the event that a best interpretation cannot be made or there is a risk of serious harm the mandate should be to make decisions that promote the adult’s personal and social wellbeing (see above under 1).

4. Aged Care Systems in NSW

A further potential barrier relevant to aged care delivery in NSW is likely to be the confusion that may arise with the implementation of the Aged Care Act 2024 (Cth).30 Under that legislation, formal supporters for decision-making (‘registered supporters’) are, for the first

26 DRC Research Report Recommendation 1 27 Shih-Ning Then, Ben White and Lindy Willmott, ‘Chapter 7 Adults who lack capacity: Substitute decision-making’ in Ben P White et al (eds), Health Law in Australia (Lawbook Co., 2024) 221-422, at 255-256. See also: acd-form-info-book.pdf 28 For more generally on advance care directives, see: NSLRC Report Recommendation 10.5. 29 See DRC Research Report Recommendation 8. 30 See further: Stewart (n 11) 34ff

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time, recognised in aged care. The sector across Australia is grappling with this new regime. However, it is also providing a stimulus for education and training about what supported decision-making is, and how it can be implemented in aged care. This presents an opportunity to raise awareness and provide sector wide upskilling in relation to supported decision-making.31

However, as the decision-making provisions in the Aged Care Act 2024 are able to run alongside or operate in conjunction with State based appointments (when a person holds appointments under state guardianship legislation and the Aged Care Act 2024), this may lead to some confusion. The Aged Care Act 2024 provides:

  • That a person who has a State based substituted decision-making appointment (i.e. guardian, enduring guardian etc):
    • may request to be appointed as a supporter under the Aged Care Act 2024;32
    • can act as a substitute decision-maker for a person accessing or seeking access to aged care funding/services if they are authorised to do that ‘thing’ with respect to the Aged Care Act 2024 under their State based appointment.33

Given the recency of the new legislation, there may be a risk that a substitute decision-maker with a State based appointment will try to make decisions under the Aged Care Act 2024 that are not within the remit of their authority (for example, a financial administrator making decisions about daily care). This would have the practical effect of increasing the range of substitute decisions being made for older adults in aged care rather than promoting a supported decision-making approach which seeks substitute decision-making to be a last resort.

One significant problem that exists already is that guardians appointed under state legislation may only be appointed to make decisions in one or more specific areas (eg accommodation, services, health, et al) in accordance with the least restrictive principle. However, it appears that once registered as a supporter under the Aged Care Act 2024, the guardian is given wider access to confidential information. That is, they may be appointed to make decisions on health matters but are given access to information on the adult’s accommodation issues. Or – they may be appointed for accommodation decisions and are being given access to information on finances or health.34

The need to educate the aged care sector and appointees regarding their roles and responsibilities under the Aged Care Act 2024 will be important over the coming years.

5. Implementation must occur across sectors

We draw the Committee’s attention to what the authors have called elsewhere the ‘principled approach’ to supported decision-making. The principled approach requires that supported

31 The BUDDY Project: Building Capacity for Supported Decision-Making. https://neura.edu.au/project/buddy-project (Accessed 10/3/2026). The Building Capacity for Supported Decision-Making for People with Dementia and Acquired Disability (BUDDY) Project is funded by the Medical Research Future Fund during 2025 and 2026. This project will develop and trial evidence-based training resources and implementation strategies (policy review, advanced practice and introductory training with follow-up mentoring) aimed at enabling aged care workers to implement supported decision-making practices and meet new requirements under the Aged Care Act 2024. This training has been developed with significant input and leadership from people with lived experience of cognitive disabilities and aged care service use. 32 Aged Care Act 2024 (Cth) (‘Aged Care Act 2024’) s 37(4)(6). 33 Aged Care Act 2024 s 28. 34 See Aged Care Act 2024 ss 28ff.

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decision-making principles and practices be embedded across all professions and service systems. See the following recommendation in particular in the DRC Research Report:

  • Recommendation 4 The interrelationships of supported decision-making with other formal systems and informal spheres of life means that supported decision-making cannot stand alone and must be embedded in and connected to existing systems with different institutional and legislative frameworks.

Many adults with impaired capacity are socially isolated, without family or friends to provide support for decision-making. In such cases especially, it is important that people in the service sectors around them have the ability to support them in making decisions. We reiterate that:

We propose that the principled approach to supported decision-making demands wider reforms – beyond focusing on supporters appointed under stand-alone decision-making legislation – to consider regulatory and practice changes more broadly. Designating particular individuals as legal supporters does not replace the need to promote capability and effective practice not just in supporters but in the broader community. The principled approach, in establishing broad but obligatory parameters for supported decision-making practice lends itself to being embedded in different regulatory regimes, including those that regulate service delivery systems encountered by …people in daily living – for example, health care, aged care and social services….importantly, reforming the regulation of institutions, professionals and other workers, also removes the onus from the adult requiring support, to initiate change.35

The principled approach requires that there be change across all sectors, so that managerial policies, professional and worker codes of conduct, and banking codes of conduct all need to reflect supported decision-making obligations. See also DRC Research Report:

  • Recommendation 6.4 Awareness of supported decision-making and skills in best practices should be built into the NDIS workforce competence framework and core competencies of all professionals involved in health, aged care, legal, financial, human services and criminal justice systems.
  • Recommendation 9 Provision of adequate funding is needed to enable supported decision-making to be implemented within and across sectors and jurisdictions in Australia.

Two of the authors of this submission have previously expressed the view previously that the Disability Royal Commission did not adequately address the above cross-system issues in their recommendations on supported decision-making.36

6. Financial sector

One of the perceived barriers to recognising supported decision-making, especially in the financial sector are concerns that supported decision-making would be confusing for third parties and lead to circumstances where it would be unclear who was responsible for the decision.37 The introduction of legally recognised supporters – appointed by the adult themselves or by NCAT – would provide some transparency and certainty in transactions with third parties, especially in that sector.

35 Julia Duffy and Shih-Ning Then, ‘Decision-making by, with and for people with aged dementia: Australian laws bridging the divide between supported and substitute decision making across regulatory systems’ in I. Glenn Cohen et al (eds), Law, Health Care, and the Aging Brain and Body (Forthcoming). Duffy_Then_preprint_February2026.pdf 36 Shih-Ning Then and Christine Bigby, ‘Supported Decision-making and the Disability Royal Commission’ (2024) Research and Practice in Intellectual and Developmental Disabilities 1-21. 37 DRC Research Report, Appendix A 190.

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See DRC Final Report, Recommendation 6.8. Formal supporters:

States and territories should introduce into guardianship and administration legislation provisions to enable statutory and personal appointments of one or more supporters for personal and financial matters, following the approach taken by Victoria in art 4 Guardianship Administration Act 2019 (Vic) and Part 7 Powers of Attorney Act 2014 (Vic)

7. Non personal decision making – Membership of Boards

We note that, so far, issues of supported decision making have focussed on personal decisions for people with cognitive impairments. However, the CPRD also acknowledges the rights of people with disabilities to participate in political and public life (see article 29). In line with this right the Disability Royal Commission and the NDIS Quality and Safeguarding Commission strongly promote the inclusion of people with disabilities in the governance of disability service organisations.

Board directorships and memberships of committees of management require a different type of decision-making, which involves weighing up evidence and competing views on what actions are most beneficial for an organisation. These decision-making processes are also bound by particular legal responsibilities, including fiduciary duties to the company; obligations to third party creditors (eg personal liability for insolvent trading) and to employees.

As it stands the Corporations Law (and state laws allowing for incorporation of non-profit organisations) appear to exclude people with intellectual disabilities (and possibly other forms of cognitive impairment) from appointment as directors, as they assume directors have decision-making capacity, require each director to have a full understanding of the legal and financial aspects of organisational governance, and that their responsibilities cannot be shared with another person. These laws do not provide for supported decision-making. This is an issue that impacts on the Associations Incorporation Act 2000 (NSW) as well as the Corporations Law and that the Committee should consider.38

8. Capacity building, including education and training are required

One of the barriers to implementing supported decision-making is lack of knowledge and capacity in the community. See especially DRC Research Report:

  • Recommendation 5 Use of evidence-informed best practice frameworks in supported decision-making should be central to all supported decision-making programs and initiatives. E.g. The La Trobe Support for Decision Making Practice Framework Learning Resource39
  • Recommendation 6 Capacity building at the individual, system and institutional level should be a key strategy for implementing all aspects of the Framework.
  • Recommendation 10 Strategies to build social connections of people with cognitive disabilities who are socially isolated should be a priority investment in supported decision-making programs and initiatives.

See also other training and practice initiatives:

38 See Position Statements - Australasian Society for Intellectual Disability 39 See also: Christine Bigby, ‘The Right to Participate in Decision Making: Supported Decision Making in Practicehttps://doi.org/’ in Christine Bigby and Alan Hough (eds), Disability Practice: Safeguarding Quality Service Delivery (Palgrave MacMillan, 2024).

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  • Various supported decision-making pilots undertaken across Australia — for example, with the Queensland Public Trustee and the Tasmanian Accident Commission — which need to be built upon so that ongoing programs are funded and rolled out;40
  • Smaller sector specific training projects, including supported decision-making for pregnant women and supported decision-making guidance for lawyers;
  • The Building Capacity for Supported Decision-Making for People with Dementia and Acquired Disability (BUDDY) Project will develop and trial evidence-based training resources and implementation strategies (policy review, advanced practice and introductory training with follow-up mentoring) aimed at enabling aged care workers to implement supported decision-making practices and meet new requirements under the Aged Care Act 2024.41

Investment is needed to entrench supported decision-making approaches throughout sectors in New South Wales. The government should consider on-going funding for the implementation of any legal and policy changes related to supported decision-making. As noted elsewhere, for practical change to result, training and sector wide education is necessary before cultural change will occur.43

(c) The distinct experiences of and challenges faced by Aboriginal people and people from culturally and linguistically diverse backgrounds

First Nations people are more likely to have a disability and are correspondingly overrepresented in guardianship and mental health systems.44 The Disability Royal Commission heard that these institutions currently provide insufficient cultural awareness, and that this lack of cultural competence contributes to harm experienced by First Nations people who are subject to guardianship orders or mental health orders.45 The Commission also heard that the resources and practices of many institutions are not developed with people from culturally and linguistically diverse backgrounds in mind.46

Supported decision-making is significantly influenced by cultural context. Supported decision-making for First Nations peoples and for people from culturally and linguistically diverse backgrounds remains under-researched. Barriers present in existing systems are likely to affect the effective provision of supported decision-making for First Nations peoples who wish to receive it.47 Different cultural approaches to decision-making in culturally and

40 Shih-Ning Then et al, ‘Delivering decision making support to people with cognitive disability—What more has been learned from pilot programmes in Australia and internationally from 2016 to 2021?’ (2024) 59(2) Australian Journal of Social Issues 532-553; Christine Bigby et al, ‘Delivering decision making support to people with cognitive disability—What has been learned from pilot programs in Australia from 2010 to 2015’ (2017) 52(3) Australian Journal of Social Issues 222-240. 41 Christine Bigby et al, ‘Evaluation of My Rights Matter: A program to change understanding, skills and policy about supported decision making’ (2024). 42 See further: the ‘BUDDY program’ (n 31). 43 DRC Research Report, Recommendation 6. 44 DRC Final Report Vol 9, 67. 45 Disability Royal Commission, Public hearing 30, Counsel Assisting submissions,149. 46 Although we note efforts to date by Public Guardians: Our commitment to First Nations People | Office of the Public Guardian (OPG), Queensland Foundations for change: OPA’s engagement with Aboriginal people with disability - Office of the Public Advocate Translated resources | Office of the Public Guardian (OPG), Queensland 47 DRC Research Report 53.

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linguistically diverse communities will also likely impact how supported decision-making is provided and received.48

The Disability Royal Commission found that:

What is needed is better communication with First Nations and culturally and linguistically diverse people to determine how decision-making support is best provided. How this should be done must be worked out by consultation with First Nations people and people of culturally and linguistically diverse backgrounds with disability, and with their supporters and communities.49

The Disability Royal Commission recommended ‘recognising the special importance of consulting and actively involving First Nations people with disability in issues that affect them’.50

We therefore recommend that the Committee actively consult with First Nations people and culturally and linguistically diverse people, as well as organisations controlled by these communities.

(d) the role and functions of the Ageing and Disability Commission (‘ADC’) in relation to supported decision-making

As discussed below, the ADC’s educative role could include targeted education about supported decision-making in New South Wales. If legislation or policy is changed in the future, they could lead the way in providing up to date information for older people and those with disabilities and their families and friends, as well as the broader public that interacts with them.

(e) possible changes to the functions of the ADC, including legislative amendments to the Act, to enhance supported decision-making

We note that ADC has a role in educating the public and raising awareness of issues relating to the rights and protection of people with disability and older people. In our recommendations to the Disability Royal Commission, we relevantly stated that:

‘[e]xisting disability rights advocacy organisations and decision support infrastructure – such as offices of Public Advocates, Public Guardians and tribunals – should be appropriately funded and used to deliver education, guidance and oversight of supported decision-making practice.’51

In following this recommendation, the Disability Royal Commission in its final report recommended:

‘Recommendation 6.14 Systemic advocacy to promote supported decision-making

States and territories should ensure that, where this is not already the case, a statutory body has a function to undertake systemic advocacy to promote supported decision making. This function should include:

  • monitoring, investigating, researching, reporting, making recommendations and advising on any aspect of relevant decision-making legislation

48 DRC Research Report 54-5. 49 Disability Royal Commission, Public hearing 30, Counsel Assisting submissions,153. 50 Recommendation 4.11, DRC Final Report. Vol 4. 51 DRC Research Report Recommendation 7.1.

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  • encouraging the development and improvement of programs, services and facilities that promote the autonomy of people with disability
  • supporting organisations that undertake advocacy and education on supported decision-making.’52

In New South Wales, the ADC is well placed to fulfil this role – likely in combination with other statutory entities. As the ADC is already a known and trusted source of information for matters involving the promotion and protection of the rights of older people and people with disability, it would make sense for the ADC to have a role in informing the public and relevant sectors about supported decision-making. It could also use its oversight role to monitor and advise on the operation of any relevant legislation – particularly any new legislation that is enacted in relation to supported decision-making in the future in New South Wales.

For capacity building initiatives that could be overseen or provided by ADC, see under TOR (b)7 above.

(f) measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances

  • The recommendations in the NSWLRC Report, the DRC Research Report and the DRC Final Report are consistent in recommending a ‘least restrictive approach’ to decision-making, which if applied with integrity would allow for substitute decision-making only as a last resort.
  • The Principled Approach recommended in the DRC Research Report and adopted in the recommendations of the DRC Final Report allow for substitute decision-making as a last resort, provided that the process of decision-making places an adult’s will and preferences at the centre of the decision-making process, and only overrides them in cases where there is risk of serious harm. To this extent, substitute decision-making can be thought of as a safeguard against harm when necessary and only in very limited cases. There are various published guides showing how even in cases where a substitute is ultimately held legally accountable for a decision, the process of decision-making adheres to a supported decision-making principle. See eg:
    • Queensland Public Guardian, Structured decision-making framework policy.
    • Macnab, Jenna, Understanding the Substitute Decision-Making Process and Practice of New South Wales Public Guardians in the Context of Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (2024) La Trobe).53
  • Key to implementing a least restrictive approach are not only changes to legislation (see under TOR (a)(1) but also ensuring that practice – which is undertaken largely in the personal and private sphere, adheres to that approach.
1. Other types of expertise required for co-design

Under TOR (a) above we recommended including the voice of people with disabilities with their lived expertise in developing supported decision-making laws and practice. We note however that lived experience is only one element of co-design. Significant evidence about supported decision-making has developed from formal scholarship and practical learnings from training programs and pilot projects that should inform development of supported decision-making models alongside lived experience of cognitive impairment.

52 DRC Final Report Vol. 6, Recommendation 6.14. 53 Macnab (n 20).

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We also emphasise that inclusion of lived experience expertise must extend to family and others who have close relationships with people with severe and profound cognitive impairments to ensure issues considered extend to this group. We reiterate our recommendations in the DRC Research Report:

11.1 Further research is needed to ensure people with more severe or profound cognitive disabilities are not excluded from co-leadership and co-design efforts. This extends to research about the practices of inclusion of people with cognitive disabilities in advisory and co-design environments and the types of skills and strategies required to provide effective tailored support to individuals to enable their participation.

11.2 The principles and elements of the Framework were derived through a process that involved extensive consultation with people with cognitive disability, advocates as well as professionals. However, this Framework should be debated, and refined further if necessary, in a process that involves co-leadership of people with disability and supporters of people with cognitive impairments. A reform agender and taskforce co-led by people with disability, including disabled people’s organisations, disability service providers, NDIS, State, Territory and Commonwealth Government disability ministries should be established for this purpose.

We wish to take the opportunity to bring the Committee’s attention to a related matter where there is an anomaly between the provisions of the GA NSW and the Mental Health Act 2007 (NSW) in relation to consent for termination of pregnancy for women with impaired capacity. In cases where a woman with impaired capacity is seeking consent fora termination, the provisions of the GA NSW apply, so that NCAT must either refuse or consent to the treatment. However, if a woman with impaired capacity is an inpatient and subject to involuntary treatment under the Mental Health Act 2007 (NSW), then either the mental health tribunal or the Secretary of the Department Health must refuse or consent to all surgery — including a surgical termination of pregnancy (NCAT can only consent to a medical termination in these cases). This is confusing, impractical and unsafe — especially because in cases where a medical abortion requires surgical follow up, consent from both bodies would be required for a woman subject to involuntary inpatient treatment.

If the GA NSW is amended in line with the recommendations above, it could also mean that supported decision-making is mandated for consenting to a medical termination of pregnancy, but not a surgical termination for women under the Mental Health Act 2007 (NSW). For a fuller explanation, see: Julia Duffy, et al., ‘The decision in ‘Re FXB’: Consent for abortion for women with impaired capacity - differential treatment in NSW for women under involuntary treatment orders’, 33 (2) Australian Health Law Bulletin (2025) 26-31.

References

Anderson, Sian and Christine Bigby, ‘Nothing about us without us’: Including lived experiences of people with intellectual disabilities in policy and service design’ in Christine Bigby and Alan Hough (eds), Disability Practice: Safeguarding Quality Service Delivery (Palgrave MacMillan, 2024) 225-246 Disability Practice

Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws: A Final Report (Australian Law Reform Commission, 2014) Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124) | ALRC

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Bigby, Christine, ’The Right to Participate in Decision Making: Supported Decision Making’ in Christine Bigby and Alan Hough (eds), Disability Practice: Safeguarding Quality Service Delivery (Palgrave MacMillan, 2024) Disability Practice: Safeguarding Quality Service Delivery | Springer Nature Link

Bigby, Christine et al, Diversity, Dignity, Equity and Best Practice: A Framework for Supported Decision-Making (Royal Commisison into Violence, Abuse, Neglect and Exploitation of People with Disability, 2023) Diversity, dignity, equity and best practice: a framework for supported decision-making | Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Bigby, Christine et al, ‘Delivering decision making support to people with cognitive disability—What has been learned from pilot programs in Australia from 2010 to 2015’ (2017) 52(3) Australian Journal of Social Issues 222-240 https://doi.org/10.1002/ajs4.295

Bigby, Christine et al, ‘Evaluation of My Rights Matter: A program to change understanding, skills and policy about supported decision making’ (2024) https://doi.org/10.26181/27099895

Duffy, Julia, Casey M Haining and Sam Boyle, ‘The decision in’Re FXB’: Consent for abortion for women with impaired capacity-differential treatment in NSW for women under involuntary treatment orders’ (2025) 33(2) Australian Health Law Bulletin 26-31

Duffy, Julia and Shih-Ning Then, ’Decision-making by, with and for people with aged dementia: Australian laws bridging the divide between supported and substitute decision making across regulatory systems’ in |. Glenn Cohen et al (eds), Law, Health Care, and the Aging Brain and Body (Forthcoming) Decision-making by, with and for people with aged dementia: Australian laws bridging the divide between supported and substitute decision-making across regulatory systems | QUT ePrints

Macnab, Jenna, ‘Understanding the Substitute Decision-Making Process and Practice of New South Wales Public Guardians in the Context of Article 12 of the United Nations Convention on the Rights of Persons with Disabilities’ La Trobe, 2024) https://doi.org/10.26181/27966045

New South Wales Law Reform Commission, Review of the Guardianship Act 1987 (Report 145, 2018) https://lawreform.nsw.gov.au/completed-projects/recent/guardianship/report-145.html

Royal Commission into Violence Abuse Neglect and Exploitation of People with Disability, Final Report (2023) Final Report | Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Stewart, Cameron, Supported Decision-Making for People Living with Dementia in NSW (NSW Parliamentary Research Service, October 2025) Supported decision-making for people living with dementia in NSW

Then, Shih-Ning and Christine Bigby, ’Supported Decision-making and the Disability Royal Commission’ (2024) Research and Practice in Intellectual and Developmental Disabilities 1-21https://doi.org/10.1080/23297018.2024.2330961

Then, Shih-Ning, Ben White and Lindy Willmott, ’Chapter 7 Adults who lack capacity: Substitute decision-making’ in Ben P White et al (eds), Health Law in Australia (Lawbook Co., 2024) 221-422

Then, Shih-Ning et al, ‘Delivering decision making support to people with cognitive disability—What more has been learned from pilot programmes in Australia and internationally from 2016 to 2021?’ (2024) 59(2) Australian Journal of Social Issues 532-553 https://doi.org/10.1002/ajs4.295

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