Submission No 41

SUPPORTED DECISION-MAKING FOR ADULTS WITH DISABILITY AND OLDER PEOPLE IN NSW

Organisation: BEING - Mental Health Consumers

Date Received: 31 March 2026

Supported Decision-Making

NSW Parliament Committee on Ageing and Disability Inquiry

SUBMISSION

PAPER

March 2026

Mental Health Consumers Bei

Supported Decision-Making

Contents

• About BEING – Mental Health Consumers
• Summary of Recommendations
• Introduction – NSW laws routinely deny legal capacity
• Human Rights Act for NSW
• Restoring Legal Capacity: Moving from substitute decision-making to supported decision-making
• Operationalising the right to exercise legal capacity
  • Withdrawing Australia’s interpretative declaration on article 12
  • Lessons learnt from the Disability Royal Commission
  • Evidence-based good practice
  • Safeguarding Legal Capacity: Accountability in supported decision-making
    • Informal supporters
    • Personal liability
    • Dignity of risk
    • General safeguarding guidance
• Conclusion: A matter of everyday dignity

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About BEING – Mental Health Consumers

BEING – Mental Health Consumers is the independent New South Wales (NSW) peak organisation by and for people with lived/living experience of mental health challenges. 100% of BEING’s staff and board are mental health consumers.

Our mission is to represent people with mental health issues to ensure that lived experience is heard and reflected in decision making, service provision and our communities. Our vision is for all mental health decisions in NSW to be decided in active partnership with people who have lived experience.

BEING is committed to human rights principles of diversity, inclusion, and equity, and believes that recovery is possible for all people who live with mental health challenges.

BEING is also a foundational member of the National Mental Health Consumer Alliance (the Alliance), the national peak body representing mental health consumers.

Acknowledgement of Country

We acknowledge the traditional custodians of various countries across New South Wales. We pay our respects to Elders past, present and emerging. We acknowledge land was never ceded, and was, is, and always will be Aboriginal land. We value your holistic management of country over the millennia and realise that Indigenous knowledge systems have much to teach us about how we thrive as a society.

Recognition of Lived Experience

We value all people with lived experience of mental health challenges, especially those from intersectional backgrounds whose experiences remind us that we need a mental health system for all. We stand alongside you, in your strength and courage, as driving forces in the work we do. Your voice will always matter

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Summary of Recommendations

Recommendation 1 – That the Committee consider supported decision-making in the context of potential developments in NSW’s human rights framework, following the referral of the current Human Rights Bill 2025 for inquiry by the NSW Parliament’s Community Services Committee.

Recommendation 2 – That the Committee seek a NSW Government response to the NSW Law Reform Commission’s Report 145 (2018).

Recommendation 3 – That the Attorney Generals Department be directed to review NSW guardianship, specific public trustee and guardian, and mental health laws, to identify law reform opportunities to give fuller effect to article 12 of the Convention on the Rights of Persons with Disabilities in NSW, noting relevant law reform in Queensland and Victoria.

Recommendation 4 – That the Committee seek to better understand how the operation of the Mental Health Act 2007 (NSW) legally authorises the denial of legal capacity of mental health consumers to make decisions and identify opportunities the legislation can be modernised to give fuller effect to article 12 of the Convention on the Rights of Persons with Disabilities in NSW.

Recommendation 5 – That the Committee recommend the NSW Government to support the withdrawal of the Australian Government’s interpretative declaration with respect to article 12 of the Convention on the Rights of Persons with Disabilities, in line with Recommendation 6.20 of the Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Recommendation 6 – That the Committee consider how a public education and awareness campaign to address attitudinal barriers to accessing supported decision-making in a range of settings, including but not limited to health, mental health, justice, education, legal, employment, service delivery, care, and individual advocacy settings, will improve any measures that ensures substitute decision-making is an alternative approach employed in appropriate and limited circumstances.

Recommendation 7 – That the Committee recommend targeted and compulsory training in supported decision-making for all mental health clinicians and consider how to improve the relationship between clinicians and peer workers in a range of settings, to support the objective of improving the capacity of the person seeking decision-making supports to make decisions in all life domains.

Recommendation 8 – That the Committee consider the essential role of peer workers in a range of settings in providing supported decision-making support, in the context of ongoing professionalisation of this workforce, and to support a diverse and intersectional range of people needing decision-making support.

Recommendation 9 – That the Committee considers how any measures that aims to ensure substitute decision-making is an alternative approach employed in appropriate

and limited circumstances, are predicated and always assumes legal capacity in both formal and informal decision-making settings.

Recommendation 10 – That the Committee ensures evidence-based good practice approaches to ensuring substitute decision-making is an alternative approach employed in appropriate and limited circumstances, promotes putting the person needing decision-making support at the centre, embeds their autonomy and agency in a manner that facilitates choice, control and self-determination, respects and values their intersectional needs, enables social inclusion and living independently, and preserves their citizenship.

Recommendation 11 – That the Committee ensures any measures to ensure substitute decision-making is an alternative approach employed in appropriate and limited circumstances, maximises the time a supporter takes to get to know the person accessing decision-making support, with the role of supporters to primarily facilitate the person accessing decision-making support to direct their own lives.

Recommendation 12 – That the Committee consider how best to ensure supporters provide supported decision-making, by considering what formal mechanisms are needed in a potential supported decision-making scheme to promote decisions that truly express and gives effect to the will and preferences of the person seeking support, while ensuring quality decisions are made by both formal and informal supporters.

Recommendation 13 – That the Committee ensures any potential review, accountability and recourse mechanisms in a supported decision-making scheme is accessible for all, adequately funded, operate on a no-wrong-door basis, and is fully independent.

Recommendation 14 – That the Committee consider key high-risk transition periods, including but not limited to, hospital discharges and leaving secure and custodial settings, and the role of mental health consumers in leading advance care and planning, and what policy and practice changes are needed to centre their will and preferences.

Recommendation 15 – That the Committee consider how current laws, particularly the Mental Health Act 2007 (NSW) and the Mental Health and Cognitive Impairment Forensic Provisions Act 2020 (NSW), impact the personal liability of any supporter in a potential supported decision-making scheme.

Recommendation 16 – That the Committee consider a proportionate balance between dignity of risk and duty of care, where proportionality is considered on a case-by-case basis.

Recommendation 17 – That the Committee consider article 12(4) of the Convention on the Rights of Persons with Disabilities for general safeguarding guidance when considering any measures that aims to ensure substitute decision-making is an alternative approach employed in appropriate and limited circumstances.

Introduction – NSW laws routinely deny legal capacity

BEING welcomes the opportunity to make this submission to the Committee on Ageing and Disability into supported decision-making for adults with disability and older people in NSW. The failure to understand and respect a person’s rights, will and preferences represents a significant attack on an individual’s personhood and right to self-determination.1

“The moment I got my diagnosis, it felt like everyone stopped asking me what I wanted. My opinion became a symptom” – BEING member

Mental health consumers are especially vulnerable to having their autonomy and legal capacity undermined. This is due to an ongoing lack of decision-making and capacity building supports despite an obligation placed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) to take measures to support decision-making, where article 12 of the CRPD calls for people to be able to express their rights, will and preferences and exercise their legal capacity.

This is particularly acute through the administration of NSW’s guardianship laws, and additional specific public trustee and guardian legislation. For mental health consumers, section 3C of the Guardianship Act 1987 (NSW) notes a relationship between a guardianship order and a patient within the meaning of the Mental Health Act 2007 (NSW), where a Public Trustee or Public Guardian takes on the role of a guardian with broad decision responsibility across a range of life domains for a mental health consumer.

The relationship of between guardianship and a patient within the meaning of the Mental Health Act 2007 (NSW) exists despite a well-established distinction between legal capacity and mental capacity. Interchanging the two is erroneous, and assuming someone who lacks mental capacity also lacks legal capacity is at odds with the established literature and international human rights law. 2

Legal capacity and mental capacity should not be confused. Legal capacity is a permanent and inherent right, whereas mental capacity “refers to decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors”.3

This distinction reflects widespread acknowledgement today that mental capacity and decision-making capacity broadly can fluctuate and vary depending on context, decision type, environment, supports available and other factors. In other words,

1 Wiesel I, Smith E, Bigby C, Then S-N, Douglas J & Carney T (2020). ‘The temporalities of supported decision-making by people with cognitive disability’, Social and Cultural Geography, available at https://doi.org/10.1080/14649365.2020.1829689 2 See for example, Werner S & Chabany R (2015). ‘Guardianship Law versus Supported Decision-Making Policies: Perceptions of persons with intellectual or psychiatric disabilities and parents’, American Journal of Orthopsychiatry 86(5). 3 United Nations Office of the High Commissioner for Human Rights (2014). ‘Training Guide on the Convention on the Rights of Persons with Disabilities (No.19)’ available at https://www.ohchr.org/sites/default/files/Documents/Publications/CRPD_TrainingGuide_PTS19_EN_Accessible.pdf (accessed 29 March 2026). 5

everyone’s decision-making can fluctuate, irrespective of a mental health diagnosis, and so laws should reflect this understanding by not presuming legal incapacity.

Yet in NSW, legal capacity for mental health consumers is routinely denied through guardianship and specific public trustee and guardian laws, and through involuntary and coercive treatment authorised through the Mental Health Act 2007 (NSW). In fact, according to the Australian Institute of Health and Welfare, NSW has the second highest rate of involuntary hospitalisations in the country at 57.7%.4

“I agreed to the medication because I was terrified of being admitted again. That’s not consent. That’s survival” – BEING member

Further, a recent human rights survey conducted by the national peak body for mental health consumers, the National Mental Health Consumer Alliance, and published in late 2025, found in NSW that 1 in 3 mental health consumers agreed to medical treatment only to avoid being forced into involuntary treatment,5 while nationally, 1 in 2 consumers avoid mental health care altogether out if fear of being treated involuntarily.6

While the denial of legal capacity is a systemic issue in NSW, its impact is not uniform. The loss of autonomy is compounded by intersecting forms of discrimination and systemic disadvantage.

• First Nations consumers: Are disproportionately represented in involuntary treatment, often facing a mental health system that fails to recognise cultural expressions of will and preference.
• Culturally and racially marginalised communities: Face significant linguistic and cultural barriers that often lead clinicians to default to substitute decision-making rather than providing the necessary support to bridge communication gaps.
• LGBTIQA+ Individuals: Frequently experience “chosen family” or preferred supporters being ignored by the legal system in favour of biological kin who may not respect their identity or preferences.
• Older People: Face both ageism and mental health challenges, where “cognitive decline” is often used as a blanket justification for the permanent removal of legal capacity.

For these groups, the shift to supported decision-making is a critical tool for addressing historical and systemic marginalisation.

4 Australian Institute of Health and Welfare (2026). ‘Involuntary treatment in public mental health care’, available at https://www.aihw.gov.au/mental-health/topic-areas/safety-quality/involuntary-treatment (accessed 29 March 2026). 5 BEING – Mental Health Consumers (2026). ‘NSW Human Rights Survey 2025’, available at https://being.org.au/nsw-human-rights-survey-2025/ (accessed 29 March 2026). 6 BEING – Mental Health Consumers (2025), ‘National Mental Health Consumer Alliance 2024 Human Rights Survey Results’, available at https://being.org.au/nmhca-2024-human-rights-survey-results/ (accessed 29 March 2026). 6

Human Rights Act for NSW

“A Human Rights Act would mean that what happened to me, having my choices ignored, my voice dismissed, my life decided for others, would finally be recognised for what it was. A violation” – BEING member

The routine denial of legal capacity is not merely a clinical or administrative oversight; it is a systemic human rights failure.

Currently, NSW lacks a comprehensive legal protection to protect the fundamental autonomy and legal capacity of mental health consumers. While other Australian jurisdictions have moved toward rights-based frameworks, the absence of a standalone Human Rights Act in NSW leaves the rights of consumers vulnerable to being outweighed by paternalistic “best interest” standards.

In March 2026, a private members bill, the Human Rights Bill 2025, introduced by the Member for Newtown in October 2025, was referred to an Inquiry by the NSW Parliament to the Community Services Committee. This development represents an important opportunity to rectify the current imbalance in our legal system.

For mental health consumers, a depending on the model adopted, a Human Rights Act would provide the necessary legal framework to uphold the principles of article 12 of the CRPD, which mandates that people with disability, including mental health consumers, enjoy legal capacity on an equal basis with others in all aspects of life.

Support for a Human Right Act in NSW would ensure supported decision-making is institutionally embedded, instead of operating at a policy level. A Human Rights Act could:

• Establish a positive obligation: Public authorities and organisations exercising a public function, for example, NSW’s Community Managed Organisations sector delivery community mental health, would be legally required to act in a way that is compatible with human rights, including the right to exercise legal capacity
• Shift the onus of proof: The burden would shift from the consumer having to “prove” capacity to the system having to justify any restriction of capacity as a last resort, and
• Create a culture of rights: It would foster a shift in clinical and legal settings from a “best interests” substitute model to a “will and preference” support model, and alongside the shift in onus of proof, locate the human rights implications away from vulnerable mental health consumers to those who work to provide care.

The Committee on Ageing and Disability must recognise that the transition to supported decision-making cannot be viewed in isolation. It requires a robust, overarching human 7

rights framework to ensure that reforms are enforceable, sustainable, and culturally embedded within the NSW public sector.

While the Community Services Committee’s inquiry into the Human Rights Bill 2025 has yet to establish a Terms of Reference, or a reporting timeline, the Committee on Ageing and Disability should consider supported decision-making in the context of potential legislative developments in human rights legal protections in NSW.

Recommendation 1 – That the Committee consider supported decision-making in the context of potential developments in NSW’s human rights framework, following the referral of the current Human Rights Bill 2025 for inquiry by the NSW Parliament’s Community Services Committee.

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Restoring Legal Capacity: Moving from substitute decision-making to supported decision-making

Noting the Committee’s Terms of Reference for this inquiry, asking for (a) the lived experience of people seeking to access appropriate support to make decisions for themselves, and (b) barriers to implementing models for supported decision-making in NSW, this section of the submission will provide a response to these items.

It is important to note that NSW reflects that no Australian jurisdiction has given full effect to article 12 of the CRPD, in line with the interpretation of article 12 as put forward by the United Nations Committee on the Rights of Persons with Disabilities.7 As such, no lived experience of people accessing appropriate support to make decisions for themselves in NSW, is fully compliant with article 12 of the CRPD.

“You can’t make good decisions in isolation. But nobody helped me build the connections I needed to have people around me who actually knew and cared about me” – BEING member

Rather, in NSW, access to appropriate support for mental health consumers to make decisions occurs at a policy and service delivery level, with varying approaches that can differ across settings. This reflects legislative assumptions as described in the introduction, that there will be cases of people for whom substitute decision-making must be undertaken in part due to the erroneous conflation between legal capacity and mental capacity.

Relatedly, there is no clear international model of supported decision-making that has been advocated by law reform bodies,8 but in 2017 the UN Special Rapporteur on the Rights of Persons with Disabilities noted that law reform on the right to legal capacity has been initiated in at least 32 countries,9 starting in Canada in the 1990s where supported decision-making originated as a process to challenge and overcome the legal barriers that prevented people with cognitive disability from receiving individualised funding.10

The United Nations defines supported decision-making as:

With supported decision-making, the presumption is always in favour of the person with a disability who will be affected by the decision. The individual is the decision-maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of

7 Mirfin-Veitch, B (2016). Exploring Article 12 of the United Nations Convention on the Rights of Persons with Disabilities: An Integrative Literature Review, Donald Beasley Institute, Dunedin. 8 Then, S-N, Carney T, Bigby C & Douglas, J (2018). ‘Supporting decision-making of adults with cognitive disabilities: The role of law reform agencies – Recommendations, rationales and influence’, International Journal of Law & Psychiatry 61: 64-75. 9 Catalina Devandas Aguilar (2017), Report of the Special Rapporteur on the Rights of Persons with Disabilities (theme: legal capacity reform and supported decision-making) (12 December 2017), at para 38, available at https://digitallibrary.un.org/record/3843478?ln=en&v=pdf (accessed 29 March 2026). 10 Bigby C, Douglas J,, Carney, T, Then S-N, Wiesel I & Smith E (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: 222-240. 9

the individual. Even when the person with a disability requires total support, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual. This distinguishes supported decision-making from substituted decision-making, such as advance directives and legal mentors/friends, where the guardian or tutor has court authorised power to make decisions on behalf of the individual without necessarily having to demonstrate that those decisions are in the individual’s best interests or according to his/her wishes.11

Characteristics of this definition can be found in Australian jurisdictions following law reform most notably in Queensland and Victoria. These two jurisdictions have adopted a hybrid model to give fuller effect to article 12 of the CRPD, with their relevant laws mentioning supported decision-making and referencing CRPD legal and mental capacity and dignity.

Meanwhile, in NSW, the lived experience of people seeking to access appropriate support to make decisions for themselves is markedly different, where a best interest model prevails. This is despite the NSW Law Reform Commission report recommending a formal supported decision-making framework supported by new legislation (an ‘Assisted Decision-Making Act’) back in 2018 (see Recommendation 4.1).12 To date, there has been no NSW Government response to the recommendation.

“Just because I have a mental illness doesn’t mean I don’t know what’s best for me. I’ve lived in this body and mind my whole life, a doctor who has known me for twenty minutes doesn’t know me better than I know myself” – BEING member

“I have sat in a hospital room and been told what will happen to me. Not asked. Told. That stays with you” – BEING member

Therefore, there is no reference to supported decision-making in NSW laws, despite the Disability Inclusion Act 2014 No. 14 (NSW) expressly stating the principles and purposes of the CRPD should be supported; with s 4(a) of the Guardianship Act 1987 (NSW) and replicated in s 39 of the Trustee and Guardian Act 2009 (NSW), facilitating a best interest model.

In effect, there is no legal requirement for supported decision-making in NSW, with mental health consumers relying on piecemeal, insufficient or non-existent access to appropriate support to make decisions for themselves; and through the operation of the Mental Health Act 2007 (NSW), are routinely denied their legal capacity to make decisions through involuntary and coercive treatment, that conflates legal capacity with mental capacity erroneously despite law reform in Australian and comparable jurisdictions overseas.

11 United Nations, Department of Economic and Social Affairs, Office of the United Nations High Commissioner for Human Rights and Inter-Parliamentary Union (2007). Handbook for Parliamentarians – From Exclusion to Equality: Realising the Rights of Persons with Disabilities, 89-90 12 NSW Law Reform Commission (2018). ‘Report 145: Review of the Guardianship Act 1987’, available at https://lawreform.nsw.gov.au/completed-projects/recent/guardianship/report-145.html (accessed 29 March 2026). 10

The approaches in the Queensland and Victorian jurisdictions are summarised below and should be illustrative to Committee on how NSW can give fuller effect to article 12 of the CRPD.

Recommendation 2 – That the Committee seek a NSW Government response to the NSW Law Reform Commission’s Report 145 (2018).

Recommendation 3 – That the Attorney Generals Department be directed to review NSW guardianship, specific public trustee and guardian, and mental health laws, to identify law reform opportunities to give fuller effect to article 12 of the Convention on the Rights of Persons with Disabilities in NSW, noting relevant law reform in Queensland and Victoria.

Recommendation 4 – That the Committee seek to better understand how the operation of the Mental Health Act 2007 (NSW) legally authorises the denial of legal capacity of mental health consumers to make decisions and identify opportunities the legislation can be modernised to give fuller effect to article 12 of the Convention on the Rights of Persons with Disabilities in NSW.

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Table 1 – Overview of the legal frameworks that improve the lived experience of people seeking to access appropriate support to make decisions in Australia

| This means acting in the person’s best interests as a last resort | s 9(1)(a): a person making a decision for a represented person ‘should give all practicable and appropriate effect to the represented person’s will and preferences, if known’.

s 31(a): VCAT must consider the will and preferences of the proposed represented person before making an order, so far as they can be ascertained.

See also Part 4 of the Act regarding the appointment of supportive guardians and supportive administrators. | participate in and implement decisions that affect their lives’.

See also s 8(1)(a) to the left. | human rights and dignity of person with a disability by (a) having regard to the Convention on the Rights of Persons with Disabilities, recognising the need to support persons with disability to make, participate in and implement decisions that affect their lives’. | | Queensland | | | | | | | Guardianship and Administration Act 2000 (QLD)

QLD Act was amended in 2018 with changes coming into force on 30 November 2020

See also Guardianship and Administration and Other | QLD Law Reform Commission – Report 67: A Review of Queensland’s Guardianship Laws (September 2010) | Hybrid approach

s 10 lays out the process to be followed which includes supporting the adult to make a decision and taking into account any ‘views, wishes and preferences’ expressed by the adult

s 10(3): If those wishes cannot be determined, the decision maker must use | Recognition of the need for recognising ‘views, wishes and preferences’ which is functionally the same as ‘will and preferences’.

s 11B – General principles 8(4) states ‘To the greatest extent practicable, a person or other entity, in exercising power for a matter for an adult, must seek the adult’s views, wishes and preferences.’ | Yes

s 5(e) states ‘an adult with impaired capacity has a right to adequate and appropriate support for decision-making’.

S 6(b) - an adult has a ‘right to adequate and appropriate support for decision-making | s 5 (a) - ‘an adult’s right to make decisions is fundamental to the adult’s inherent dignity’

Presumption of capacity: s 7 (a), s 11, s 11B General principles – Presumption of capacity

s 7 (a), s 11, s 11B General principles – Presumption of capacity | | | | | | | |

| Legislation | the principle of ‘substituted judgement’ and consider based on information what they think the person’s views, wishes and preferences would be.

If that is not possible or if there remains ‘unreasonable risk to the adult’s health, welfare or property’ then best interests would apply: s 12(1) | views, wishes and preferences.’ | s 11B General principles, Principle 8(2) ‘An adult must be given the support and access to information necessary to enable the adult to make or participate in decisions affecting the adult’s life’.

If that is not possible or if there remains | s 11B (2)(1) ‘An adult’s inherence dignity and worth, and equal and inalienable rights must recognised and taken into account’

s 11B(2)(2) ‘The rights of all adults to the same human rights and fundamental freedoms, regardless of a particular adult’s capacity, must be recognised and taken into account.’ | | Legislation Amendment Bill 2018 – Explanatory Notes | | | | | |

Operationalising the right to exercise legal capacity

Noting the Committee’s Terms of Reference for this inquiry, asking for (f) measures to ensure substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances, this section of the submission will provide a response to this item.

Withdrawing Australia’s interpretative declaration on article 12

It should be first noted that a key legal barrier for reform in NSW is the Australian Government’s interpretative declaration in relation to article 12 of the CRPD. An interpretative declaration is not a binding reservation and does not purport to modify the legal effects of any treaty or provision in a treaty in its application to the state (Australia) that is making the declaration. Thus, Australia remains bound to the original treaty provision (in this case article 12). However, the interpretative declaration states:

Australia declares its understanding that the CRPD allows for fully supported or substituted decision-making arrangements, which provide for decisions to be made on behalf of a person, only where such arrangements are necessary, as a last resort and subject to safeguards. (Convention on the Rights of Persons with Disabilities: Declarations and Reservations (Australia), opened for signature 30 March 2007, 999 UNTS 3 [entered into force 3 May 2008]).

This position was reiterated by the Australian Government at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Public Hearing 18), leading to a recommendation in the Final Report of the Disability Royal Commission published in 2023 from a majority of the Commissioners, for the Australian Government to withdraw its interpretative declaration with respect to article 12 (Recommendation 6.20).13 The Australian Government responded specifically to that recommendation as needing further consideration in 2024.14

For NSW to give full effect to article 12 of the CRPD, the Committee must consider the role the NSW Government has in overcoming this key legal barrier. A fully compliant legal approach to article 12 would see the NSW Government support the majority recommendation from the Disability Royal Commission to withdraw the Australian Government’s interpretative declaration with respect to article 12.

Recommendation 5 – That the Committee recommend the NSW Government to support the withdrawal of the Australian Government’s interpretative declaration with

13 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023). ‘Enabling autonomy and access; Final Report, Volume 6’. Available at https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%206%2C%20Enabling%20autonomy%20and%20access.pdf (accessed 29 March 2026). 14 Australian Government (2024). Australian Government Response to the Disability Royal Commission (July 2024) at 84. Available at https://www.health.gov.au/sites/default/files/2025-07/australian-government-response-to-the-disability-royal-commission.pdf (accessed 29 March 2026). 15

respect to article 12 of the Convention on the Rights of Persons with Disabilities, in line with Recommendation 6.20 of the Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Lessons learnt from the Disability Royal Commission

Volume 6 of the Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability contained recommendations relevant to the Committee’s inquiry beyond guardianship legislation, in promoting and supporting the right of people to access supported decision-making.

In totality, the recommendations overarchingly make provisions for introducing consistency across all Australian jurisdictions, and should be understood as a whole as many recommendations are co-dependent, covering the following:

1. Consistent terms and definitions, and more rights-based language (Recommendation 6.4)
2. A clear objective consistent with article 12 of the CRPD (Recommendation 6.5)
3. Principles for supported decision-making to be used for formal supported decision-making (Recommendation 6.6)
4. A focus on decision-making ability (rather than deficit model) (Recommendation 6.7)
5. Provisions to recognise formal [nominated] supporters (Recommendation 6.8)
6. Provisions to establish representative [appointed] supporters as a last resort (Recommendation 6.9)
7. A decision-making process (Recommendation 6.10)
8. Developing and applying guidelines to maximise participation (Recommendation 6.11)
9. Rules around the disclosure of information in relation to formal arrangements (Recommendation 6.12)
10. Recommendations to provide information and education (Recommendation 6.13)
11. A provision for promoting supported decision-making (Recommendation 6.14)
12. The need for national standards for Public Advocates, Public Guardians and Public Trustees (Recommendation 6.15)

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13. The need to collect data about formal supports for decision-making (Recommendation 6.19)
14. Provisions for funding additional systemic and personal advocacy required (Recommendation 6.21), and
15. The need to collect data about advocacy activities (Recommendation 6.22).

These recommendations promote the following interrelated principles the Committee should consider when contemplating how to operationalise supported decision-making in NSW. Supported decision-making should:

• a) Promote putting the person at the centre: with the main objective to improve the capacity to make decisions in all life domains, not just in service settings
• b) Embed autonomy and agency that facilitates choice, control, self-determination and living independently: so, people are actively involved in decision-making to empower and maintain independence in daily life
• c) Enable social inclusion: so, people can participate and engage meaningfully in their communities and wider society, including building community capacity to respect the legal capacity of people who need supported decision-making, and
• d) Preserve citizenship: so, people can be active citizens, capable of contributing to society, and where their entitlement to support is respected by the community.

“I wanted to try living independently. My support team said it was too risky. I never got the chance to prove them wrong or to prove myself right” – BEING member

“When I came out of hospital there was no one. My illness had cost me my friendships, my family relationships, my sense of community. Nobody gave me any help to rebuild that, they just sent me home” – BEING member

Thus, in contemplating measures to ensure substitute decision-making is genuinely an alternative approach that is employed in appropriate and limited circumstances, the Committee needs to consider the attitudinal barriers that the community holds after decades of NSW laws promoting a substitute decision-making regime.

“I shouldn’t have to rely on someone’s goodwill to have my rights respected. My rights should be protected by law, just like everyone else’s” – BEING member

This is especially true for community attitudes towards mental health consumers, where the conflation of mental capacity with legal incapacity has routinely denied the legal capacity of mental health consumers to make decisions.

Recommendation 6 – That the Committee consider how a public education and awareness campaign to address attitudinal barriers to accessing supported decision- 17

making in a range of settings, including but not limited to health, mental health, justice, education, legal, employment, service delivery, care, and individual advocacy settings, will improve any measures that ensures substitute decision-making is an alternative approach employed in appropriate and limited circumstances.

Recommendation 7 – That the Committee recommend targeted and compulsory training in supported decision-making for all mental health clinicians and consider how to improve the relationship between clinicians and peer workers in a range of settings, to support the objective of improving the capacity of the person seeking decision-making supports to make decisions in all life domains.

Evidence-based good practice

Through addressing community attitudes from the onset, the best chance of success is afforded to any measures that ensures substitute decision-making is an alternative approach employed in appropriate and limited circumstances.

The interrelated principles above can be adapted and applied across multiple domains, including guardianship, mental health, health, justice and other settings. The principles all presume legal capacity is respected and preserved, in both formal and informal decision-making settings. In seeking to understand the nuance of supported decision-making, Beamer and Brookes states it can be differentiated from substituted decision-making in the following way:

“The starting point is not a test of capacity, but the presumption that every human being is communicating all the time and that this communication will include preferences. Preferences can be built up into expressions of choice and these into formal decisions. From this perspective, where someone lands on a continuum of capacity is not half as important as the amount and type of support, they get to build preferences into choices”.15

This commentary reflects elements of good practice, compliant with the CRPD, consistently identified across the literature and tied to an evidence base.16 While some elements overlap, they are included separately for completeness:

15 Beamer S & Brookes M (2001). Making Decisions: Best practices and new ideas for supporting people with high support needs to make decisions, Values into Action, London: 4 16 See for example, Bigby C, Douglas J, Carney, T, Then S-N, Wiesel I & Smith E (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: 222-240; Bigby C, Whiteside NM & Douglas J (2019). ‘Providing support for decision-making to adults with intellectual disability: Perspectives of family members and workers in disability support services’ Journal of Intellectual & Developmental Disability 44(4):396–409; Bigby C, & Douglas J (2020). ‘Supported Decision-making’ in Stancliffe, R., Wehmeyer, P., Shrogran, K. (eds) Choice, preference, and disability: Promoting self-determination across the lifespan. Springer, New York; Bigby, C & Douglas, J (2021). ‘Examining the Complexities of Support for Decision-Making Practice’ in: Khemka, I., Hickson, L. (eds) Decision-Making by Individuals with Intellectual and Developmental Disabilities. Positive Psychology and Disability Series. Springer, New York; Browning M, Bigby C & Douglas J (2020). ‘A process of decision-making support: Exploring supported decision-making practice in Canada’ Journal of Intellectual & Developmental Disability; Douglas J, & Bigby C (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; Watson J, Wilson E & Hagiliasis, N (2017) ‘Supporting end of life decision- 18

1. The person needs an established trusted relationship with the supporter to ensure the supporter understands the person’s rights and is responsive to the expression of a person’s will and preferences

2. The person needs a broad supportive social network to assist them to make decisions, provide wider contextual opportunities for choice and decision consideration, and provide mental health support. The person needs adequate support to develop that social network

3. Supported decision-making, as envisaged by article 12 of the CRPD, will require a supporter to:

   • a. Recognise the person requiring decision-making support is capable of decision-making
   • b. Have a positive attitude towards risk
   • c. Recognise the importance of choice and control
   • d. Uphold the rights of the person requiring decision-making support
   • e. Provide support for decision-making that gives effect to will and preference, and
   • f. Identify and pursue opportunities for the person to make decisions and to encourage repeated exercise of rights, will and preference.

4. To ensure a person has their will and preferences acted upon, the supporter must be aware of their unequal relationship with the person they support and suspend their own judgments.

5. To communicate concepts in a way they can be understood by the person, the supporter must be aware of the person’s specific support and communication needs.

6. To identify the will and preference of the person, the supporter must have the capacity to understand how the person requiring support expresses themselves (verbally and non-verbally).

7. In the case of a person with a traumatic brain injury or degenerative onset of cognitive impairment, or impairment that is episodic in nature, supporters should understand the person’s will and preferences prior to the need for decision-making support.

8. The supporter may be required to anticipate and manage the potential emotional impact on the person and the process of decision-making.

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 and Mirfin-Veitch, B (2016). Exploring Article 12 of the United Nations Convention on the Rights of Persons with Disabilities: An Integrative Literature Review, Donald Beasley Institute, Dunedin. 19

9. To ascertain the person’s will and preferences and give effect to them, the supporter must develop skills and approaches.
10. The supporter must understand the process of supported decision-making is paramount. The supporter must reflect on the process with the person requiring decision-making support, encourage transformative changes, and adjust their support to reflect the changes.

A common cross-cutting theme is the importance of a supporter taking the time to get to know the person they are supporting. In cases where a person requiring decision-making support is reliant on support coming via an agency rather than their informal network, both evidence from the practice of mental health peer workers across NSW and the research about the actual practice of providing support for decision-making, points to the importance of trusting relationships and the lengthy and time-consuming nature of providing good support.

“The first time someone who had been through the system themselves sat with me and explained my rights, I cried. Nobody had ever done that before. I didn’t know I had any” – BEING member

This suggests the need for longevity of decision maker/supporter relationships and by extension the longevity of programs that can recruit, train and support supporters. The lack of evidence about effective models for delivering support for decision-making, coupled with the legislative, organisational, and familial complexity of providing support, further highlight the need for long-term services and supports integrated across multiple systems and interfaces.17

“You can’t make good decisions in isolation. But nobody helped me build the connections I needed to have people around me who actually knew and cared about me” – BEING member

The role of supporters is therefore:

1. To explain issues, explore options and support the expression of will and preferences18
2. They may engage others in decision-making processes, make agreements that give effect to decisions, or implement decisions19
3. To identify actionable steps for the person seeking decision-making support, to build the social network needed to exercise choice and make decisions,

17 Bigby C, Douglas J, Carney T, Then S–N, Wiesel I, & Smith E (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 52:222–240. 18 Carney T, & Beaupert F (2013). ‘Public and Private Bricolage – Challenges Balancing Law, Services and Civil Society in Advancing CRPD Supported Decision-Making’ UNSW Law Journal 36(1):175–201. 19 Bigby C, & Douglas J (2020). ‘Preliminary evaluation of the La Trobe Support for Decision-making Practice Framework (PowerPoint)’. Available at https://www.latrobe.edu.au/__data/assets/pdf_file/0007/1187062/SfDM_Bigby_Douglas.pdf (accessed 29 March 2026) 20

including connections to peer and community groups, social prescribing programs and individual advocacy programs, and 4. May extend to interpreting signs and preferences, ascribing agency to a person’s actions, or co-constructing will and preferences or decisions.20

“When I came out of hospital there was no one. My illness had cost me my friendships, my family relationships, my sense of community. Nobody gave me any help to rebuild that, they just sent me home” – BEING member

These roles reflect the importance of positive perceptions of a person’s ability to lead self-directed lives is not only reflected in the research literature, but in principles guiding contemporary law and policy. For example, the United Kingdom’s Mental Capacity Act 2005 has, as its first principle, a need for supporters to assume a person has decision-making capacity.

Lastly, if a potential supported decision-making scheme is to be truly predicated on ensuring a person’s ability to lead self-directed lives, then the Committee must consider that the experience of supported decision-making will not be uniform. The compounding disadvantage faced especially by First Nations, LGBTIQA+, culturally and racially marginalised and older consumers, sits within broader contexts of colonisation, identity-based discrimination, cultural and language barriers and systemic distrust. These contexts need to be considered meaningfully.

This raises the relevant question of who should provide supported decision-making. While BEING does not have a position on this question, while fundamental, the collective experience of BEING’s membership, all of whom are mental health consumers, is that there is a clear role for peer workers and consumer advocates as being essential to a successful supported decision-making scheme.

“My peer worker was the only person in the room who actually believed I could make good decisions for myself. That belief changed everything” – BEING member

Peer workers and consumer advocates bring an irreplaceable capacity to support people to understand their rights, articulate their will and preferences, and navigate complex systems from a position of genuine trust and shared experience. Any supported decision-making scheme that does not formally recognise and resource peer workers is incomplete.

Recommendation 8 – That the Committee consider the essential role of peer workers in a range of settings in providing supported decision-making support, in the context of ongoing professionalisation of this workforce, and to support a diverse and intersectional range of people needing decision-making support.

Recommendation 9 – That the Committee considers how any measures that aims to ensure substitute decision-making is an alternative approach employed in appropriate

20 Bigby C, & Douglas J (2020a). ‘Supported Decision-making’ in Stancliffe, R., Wehmeyer, P., Shrogran, K. (eds) Choice, preference, and disability: Promoting self-determination across the lifespan. New York: Springer. 21

and limited circumstances, are predicated and always assumes legal capacity in both formal and informal decision-making settings.

Recommendation 10 – That the Committee ensures evidence-based good practice approaches to ensuring substitute decision-making is an alternative approach employed in appropriate and limited circumstances, promotes putting the person needing decision-making support at the centre, embeds their autonomy and agency in a manner that facilitates choice, control and self-determination, respects and values their intersectional needs, enables social inclusion and living independently, and preserves their citizenship.

Recommendation 11 – That the Committee ensures any measures to ensure substitute decision-making is an alternative approach employed in appropriate and limited circumstances, maximises the time a supporter takes to get to know the person accessing decision-making support, with the role of supporters to primarily facilitate the person accessing decision-making support to direct their own lives.

Safeguarding Legal Capacity: Accountability in supported decision-making

While little is known about the effectiveness of supported decision-making schemes or safeguarding mechanisms,21 there are concerns and confusion about the legal standing of informal supporters and the personal liability of supporters.

Informal supporters

Several studies have identified the restrictive impact that staff or family expectations can have on decision-making opportunities 22 with some suggestion that we can longer rely on unregulated informal support for decision-making. 23 A significant amount of research suggests the inequities caused by the ‘lottery of social capital’, and evidence that a person’s rights, will and preferences are often overridden in an informal network means that direct intervention or supervision may be required to ensure justice.

As the emerging body of evidence about decision support suggests, informal support for decision-making often lacks systematic guidance, resources to build supports’ capacity or mechanisms for accountability, and runs the risk of being undermined by conflict or uncertainty, paternalism and becoming simply informal substitute decision-making.24

21 Bigby C, & Douglas J (2020). ‘Supported Decision-making’ in Stancliffe, R., Wehmeyer, P., Shrogran, K. (eds) Choice, preference, and disability: Promoting self-determination across the lifespan. New York: Springer. 22 Bigby C, Whiteside M, & Douglas J (2019). ‘Providing support for decision-making to adults with intellectual disability: Perspectives of family members and workers in disability support services’, Journal of Intellectual & Developmental Disability 44(4): 396–409. 23 Bigby C, & Douglas J (2020), op cit. 24 Bigby C, Douglas J, Carney T, Then S–N, Wiesel I, & Smith E (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 52:222–240. See also Bigby C, & Douglas J (2020). ‘Supported Decision-making’ in Stancliffe, R., Wehmeyer, P., Shrogran, K. (eds) Choice, preference, and disability: Promoting self-determination across the lifespan. New York: Springer. 22

From the perspective of mental health consumers, relevant factors such as trauma, conflicts of interest including financial interests, misunderstanding and/or diverging views of mental health challenges from family, kin and carers providing informal support, does not inherently mean their involvement in providing supported decision-making is inherently warranted, protective and productive. In many circumstances, it can be its own safeguarding risk.

“My guardian made decisions about where I lived, how I spent my money, and who I could see. Nobody asked me. I felt like I had ceased to exist as a person” – BEING member

Therefore, while safeguards are critical in formal settings, the type of safeguards needed in informal settings poses a wicked problem for lawmakers and policymakers. While Recommendation 6 earlier in the submission calls for a public awareness and education campaign, and if implemented will go some way to improve the experience of people accessing decision-making support in informal settings, there could be formal mechanisms to improve experiences in informal settings.

These formal mechanisms can include, but not be limited to, ensuring that:

• a) A third party can request a review of whether a person needs support to make decisions
• b) A third party can request a review of whether a person wants supports to make decisions, and
• c) There are robust considerations about the appointment of a formal supporter, or appointed formal supporter, where no natural supports exist.

These three safeguard issues would provide good indicators of a quality outcome for a supported decision-making process especially in informal settings, while accounting for the highly individualised nature of delivering supported decision-making. They essentially ensure any potential supported decision-making scheme builds on mechanisms that centre the two below broad indicators based on the literature25 to demonstrates the effectiveness of a supported decision-making process:

1. Does a decision arrived at through supported decision-making truly express and gives effect to the will and preferences of the person seeking support, and
2. Is that decision more beneficial to the person seeking support than a decision made alone, or than the decision made by some proxy, regardless of whether the decision was made formally or informally.

The above three safeguard issues were not covered by Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, but were raised by

25 Kohn NA, Blumenthal JA (2014). ‘A critical assessment of supported decision-making for persons aging with intellectual disabilities’ Disability and Health Journal 7: s40–s43, see s 42. 23

BEING at a closed meeting with the Australian Guardianship and Administration Council in October 2025, with Public Trustees and Guardians from across Australia, and warrants further consideration.

From a mental health consumer perspective, where legal capacity is routinely denied through involuntary and coercive treatment, these indicators and formal mechanisms need to be specifically applied in the settings where legal capacity is denied in in-patient and community settings.

Therefore, the Committee must consider the role of mental health consumers leading in advance planning, discharge and accessing broader supports. Consumer-led advance care directives and crisis planning are immediate and practical steps to improve the experience of mental health consumers, especially in the absence of adequate review, accountability and recourse mechanisms. Any mechanisms that provide review accountability and recourse for violating legal capacity must also be accessible and independent.

Recommendation 12 – That the Committee consider how best to ensure supporters provide supported decision-making, by considering what formal mechanisms are needed in a potential supported decision-making scheme to promote decisions that truly express and gives effect to the will and preferences of the person seeking support, while ensuring quality decisions are made by both formal and informal supporters.

Recommendation 13 – That the Committee ensures any potential review, accountability and recourse mechanisms in a supported decision-making scheme is accessible for all, adequately funded, operate on a no-wrong-door basis, and is fully independent.

Recommendation 14 – That the Committee consider key high-risk transition periods, including but not limited to, hospital discharges and leaving secure and custodial settings, and the role of mental health consumers in leading advance care and planning, and what policy and practice changes are needed to centre their will and preferences.

Personal liability

Specific to mental health consumers, s 191 of the Mental Health Act 2007 (NSW) limits personal liability of any healthcare professional, police officer or ambulance officer, who, in good faith, exercises a function that is conferred or imposed on a mental health consumer through the operation of the Mental Health Act 2007 (NSW) or the Mental Health and Cognitive Impairment Forensic Provisions Act 2020 (NSW).

This may undermine the effectiveness of any potential supported decision-making support provided to a mental health consumer, while also effectively ensuring two liability standards will exist in a potential supported decision-making scheme.

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Recommendation 15 – That the Committee consider how current laws, particularly the Mental Health Act 2007 (NSW) and the Mental Health and Cognitive Impairment Forensic Provisions Act 2020 (NSW), impact the personal liability of any supporter in a potential supported decision-making scheme.

Dignity of risk

“I wasn’t allowed to take risks, not real ones. But being kept ‘safe’ cost me my independence, my confidence and years of my life I can never get back” – BEING member

Dignity of risk is defined as “the placement of greater value on respecting the individual’s right to decide, even when a person’s choices may seem foolish to others, than on protecting the ‘best interests’ of the individual”,26 and was first coined by Robert Perske in 1972.27

The key challenge facing systems and supporters with dignity of risk is balancing the risk with the duty of care that may be owed (e.g. a Public Guardian or Public Trustee). While unduly restricting risk can result in a diminished quality of life (and hence ‘harm’), any risk taking should be ‘reasonable’, and therefore a key issue here is proportionality.

While proportionality is best considered on a case-by-case basis, risk cannot be avoided completely, so any potential supported decision-making scheme needs to account for the harm that can occur by not allowing for the dignity of risk.

“Everyone else gets to make mistakes and learn from them. That’s just called living. When you have a mental illness, your mistakes become evidence that you can’t be trusted” – BEING member

Different Australian and overseas comparable jurisdictions have attempted to address these challenges. For example, s 1(4) of the United Kingdom’s Mental Capacity Act 2005 and s 5 of Queensland’s Guardianship and Administration Act 2000 and Victoria’s Guardianship and Administration Act 2019.

Recommendation 16 – That the Committee consider a proportionate balance between dignity of risk and duty of care, where proportionality is considered on a case-by-case basis.

General safeguarding guidance

Finally, article 12(4) of the CRPD provides good guidance on what safeguards need to be in place for any potential supported decision-making process, both formally and informally. These are, the process must:

1. Be free from conflict and undue influence

26 Hommel PA (1996). ‘The More Things Change: Principles and Practices of Reformed Guardianship’, in M Smyer et al. (eds), Older Adults and the Law (Springer Publishing, 1996) 27 Perske R (1972). ‘The dignity of risk and the mentally retarded’ (sic), Mental Retardation (sic) 10(1):24–27. Decision-Making 182-201. 25

2. Be proportional and tailored to the individual needs and circumstances of each person
3. Apply for the shortest period of time
4. Are subject to regular review by a competent, independent and impartial authority or judicial body
5. Are proportionate to the degree to which any safeguard measures affect a person’s rights and interests, and
6. Provide sufficient ways for jurisdictions to respond to potential harm, abuse, neglect and exploitation while being consistent with a person’s rights, will and preference, while not not over-regulating the lives of people.

Recommendation 17 – That the Committee consider article 12(4) of the Convention on the Rights of Persons with Disabilities for general safeguarding guidance when considering any measures that aims to ensure substitute decision-making is an alternative approach employed in appropriate and limited circumstances.

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Conclusion: A matter of everyday dignity

“I don’t want someone to ‘protect’ me by taking away my choices. I want the support to live my own life, even if I make mistakes. That is what being human is”

– BEING member

The current legislative landscape in New South Wales represents a fundamental failure to respect the legal capacity of mental health consumers. For too long, our laws have interchanged mental capacity with legal capacity, creating a system where a diagnosis often serves as a primary justification for the routine denial of autonomy.

With NSW maintaining the second-highest rate of involuntary hospitalisations in the country at 57.7%, the transition from a “best interest” substitute decision-making model to a robust supported decision-making framework is a sorely needed area of law reform and human rights-based reform.

BEING – Mental Health Consumers urges the Committee to consider how best to give full effect to article 12 of the CRPD. The hybrid models seen in Queensland and Victoria, show a path forward, but NSW can learn from other jurisdictions to lead on approaches to supported decision-making, ensuring that support is tailored to an individual’s needs rather than their perceived deficits.

Decision-making support is the cornerstone of social inclusion, trauma-informed recovery, and active citizenship. It is time for the NSW Government to finally respond to the NSW Law Reform Commission’s 2018 recommendations and ensure that every individual is the primary author of their own life.

Reform requires more than just legislative amendments; it also demands a shift in the attitudinal barriers that permeate our health, legal, service delivery and social systems.

With the referral of the Human Rights Bill 2025 to Committee inquiry, NSW has a fantastic opportunity to lead the nation in protecting the human rights of those in most need of legal protections.

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BEING - Mental Health Consumers redacted info@being.org.au 1300 234 640