Submission No 34
SUPPORTED DECISION-MAKING IN NSW
Organisation: Carers NSW
Date Received: 20 March 2026
Carers NSW
20 March 2026
The Committee on Ageing and Disability
Parliament of New South Wales
Macquarie Street, Sydney NSW 2000
ageingdisability@parliament.nsw.gov.au
RE: Inquiry into supported decision-making for adults with disability and older people in NSW
Carers NSW welcomes the opportunity to provide feedback to The Committee on Ageing and Disability (The Committee) on the Inquiry into supported decision-making for adults with disability and older people in New South Wales (NSW).
As the peak body for carers in NSW, Carers NSW recognises that supported decision-making is central to the autonomy and dignity of people living with disability and older people. We also acknowledge the significant and often informal role that family and friend carers play in supporting decision-making across health, financial, legal and social systems. Reform in this area must ensure that supported decision-making arrangements uphold individuals’ rights, will and preferences while also ensuring that safeguards are not prohibitive and that they provide clarity, guidance and appropriate frameworks for carers and service providers who assist them to make decisions.
This submission responds to the following terms of reference:
- b) barriers to implementing models for supported decision-making across legal, financial, health, education, employment and care systems in NSW
- d) the role and functions of the Ageing and Disability Commission (the Commission) in relation to supported decision-making
- e) possible changes to the functions of the Commission, including legislative amendments to the Act, to enhance supported decision-making
- f) measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances
About Carers NSW
Carers NSW is the peak non-government organisation for carers in New South Wales (NSW). A carer is any individual who provides care and support to a family member or friend who lives with a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers NSW is part of the National Carer Network and a member of Carers Australia. Our vision is an Australia that values and supports all carers, and our goals are to:
- Be a leading carer organisation in which carers have confidence
- Actively promote carer recognition and support
- Actively support carers to navigate a changing service landscape that will be characterised by ongoing policy reform
- Promote connected community experiences and opportunities for carers that are inclusive of diverse carer groups
- Lead and advocate for carer-specific and carer-inclusive policy making, research and service delivery
- Continue to be a quality-driven, responsive and carer-focused organisation.
Thank you for accepting our submission. For further information, please contact redacted.
Yours sincerely,
redacted
Sharon Gudu
CEO
Carers NSW
Background: Carers and supported decision-making in NSW
Most people at some point in their lives will seek support from someone they trust to understand information and make important decisions. For many individuals who live with a disability, mental illness, drug or alcohol dependency, chronic health condition, terminal illness or, who is ageing or frail, family and friend carers are the primary source of this decision-making support.
The NSW Carers (Recognition) Act 2010 recognises carers as partners in care who have distinct knowledge of the person they care for1, often positioning carers as trusted supporters of people who require or prefer to receive assistance with decision-making.
Carers regularly support decision-making by helping people navigate service systems, understand medical, financial and legal information, and communicate with professionals. Through this role, carers help ensure that decisions reflect the will and preferences of the person they care for.
Data from the 2024 National Carer Survey demonstrates the breadth of carers providing decision-making support in NSW2:
- 80.6% of carers provide support with administration and coordinating services
- 76.7% assist with financial management
- 78.6% provide cognitive support, including assistance with decision-making
- 64.8% provide behavioural support
The Carers NSW 2024 National Carer Survey also found that approximately 40.1% of carers have formalised their role in supporting with decisions through substitute decision making arrangement.3 However, carers report that even where such arrangements are in place, there are ongoing challenges to implementing decisions. This includes limited guidance on how to demonstrate a supported decision-making approach within substitute decision-making arrangements.
Carers NSW acknowledges the Ageing and Disability Commissioner Act 2019 and its recognition of families and carers in the lives of adults living with disability and older people. However, in order to take a supported decision-making approach, carers and broader members of the community need to be better equipped to assess the decision-making support needs of individuals and understand how to implement best practice decision-making support.
b) barriers to implementing models for supported decision-making across legal, financial, health, education, employment and care systems in NSW
Limited recognition of the role of carers as supported decision-makers
Carers NSW strongly believes that any expansion of the functions of the Ageing and Disability Commission should begin with clear recognition that supported decision-making commonly occurs within informal caring relationships. Carers often help older people and adults living with disability to understand information, communicate their will and preferences, and make decisions. Despite this, the role of carers in supported decision-making often goes unrecognised.
1 NSW Carer (Recognition) Act 2010. 2 Carers NSW (2025), The 2024 National Carer Survey. 3 Carers NSW (2025) The 2024 National Carer Survey.
Carers NSW regularly hears from carers who face significant barriers when navigating the NSW guardianship system, particularly where formal arrangements intersect with day-to-day care responsibilities. This includes carers reporting difficulties progressing services where a formally appointed decision-maker is not the primary day-to-day carer, is difficult to contact, or does not share the same understanding of the person’s preferences. In these circumstances, services may default to strict authority requirements and refuse to discuss matters with the carer, even where the carer could appropriately assist the person to participate in decision-making. This can delay essential supports and create preventable distress for both the carer and the person receiving care.
Many carers support people to make and communicate decisions yet report that services still require “formal authority” before engaging with them or involving them in discussions about care. In most cases, associating this with privacy or consent requirements. This reflects both limited recognition of carers important role in supporting decisions and the absence of a clear supported decision-making framework in NSW. Even where substitute decision-making arrangements are not required, the practical outcome is often the same, as carers are told that the matter cannot proceed unless a substitute decision-maker is appointed.
Given that most carers do not want or have formal legal decision-making arrangements in place, these systemic gaps leave many carers performing an informal supported decision-making role excluded from conversations which may affect them and without clear guidance or support. Carers NSW therefore considers it essential that the Committee examine how informal supported decision-making can be better recognised and guided so that it can operate effectively and safely across NSW systems.
No established supported decision-making framework in NSW
As supported decision-making is increasingly recognised as the preferred human rights-based approach, Carers NSW is concerned that the current policy landscape still tends to default to substitute decision-making. This is evident across a range of settings, including aged care, hospital discharge planning, financial services and Service NSW, as carers report being required to prove legal substitute decision-making arrangements, such as formal guardianship, before they can be included in discussions and planning.
In practice, substitute decision-making is often treated as the safer or more familiar option, particularly where the level or types of support someone may need with making decisions fluctuates. However, when it is prioritised in circumstances where supported decision-making is feasible, the role of carers in supporting a person’s will and preferences can be overlooked.
Carers NSW encourages the Committee to address the absence of a consistent and widely understood supported decision-making framework in NSW. Carers NSW considers that a supported decision‑making framework in NSW should establish supported decision‑making as the default, least‑restrictive approach, grounded in human rights and focused on upholding a person’s will and preferences. Such a framework should recognise the central role of carers and other trusted supporters, provide practical guidance on implementation, and clearly set out the roles, expectations and safeguards that apply to those providing decision‑making support. It should assist service providers to understand when and how supported decision‑makers should be appropriately involved, including in relation to consent and information‑sharing, and ensure that substitute decision‑making is used only where necessary and proportionate.
Gaps in information and education for carers seeking to implement supported decision-making in NSW
Despite many carers in NSW supporting the people they care for to make decisions, there remains limited opportunities for carers to receive formal training or practical support to do so. The Carers NSW 2024 National Carer Survey shows that carers are highly involved in planning and decision-making, despite often lacking the information they need4:
- Over 70% of carers supporting someone in aged care are involved in planning and decision-making, yet only around 40% agree they are provided with all the information they need.
- Over 70% of carers supporting someone engaged with the NDIS are involved in planning and decision-making, yet only around 30% report receiving sufficient information.
- Approximately 55% of carers supporting someone in mental health services are involved in decision-making, yet only around 30% feel adequately informed.
- Approximately 65% of carers interacting with health services are responsible for planning and decision-making, yet only around 45% report being provided with all the information they need.
Carers also report to Carers NSW their uncertainty about where to go for help, how to resolve disagreements, and what procedural steps are required to escalate concerns. Many describe being referred between services, receiving inconsistent advice, or being directed to inappropriate pathways. This can prolong delays and increase distress for both the carer and the person receiving care.
Future planning discussions can be particularly sensitive and difficult to navigate. Carers report that while they often want to support decisions that reflect the will and preferences of the person they care for, or make the “right” decision, they may still feel uncertain about how to do this in practice, especially where the need for support with decision-making capacity may increase slowly over time. Carers also report difficulty understanding when supported decision-making is appropriate, how it interacts with substitute decision-making, and how to navigate the service systems in which these arrangements operate.
Carers NSW delivers supported decision-making workshops for carers, but resourcing constraints limit how often these can be offered. Carers NSW is also continuing to develop additional resources on supported decision making for carers through the Caring Safely project under the NSW Carers Strategy 3rd Action Plan 2025-26. However many carers report a need for individual support over time to build skills in implementing supported decision-making and navigating more complex decisions. While family mediation services, such as Let’s Talk Elder Mediation Service delivered by Relationships Australia NSW, may assist with navigating some complex decisions within families, there is also a need for more accessible, ongoing support, such as a phone line or navigation service, to help carers develop confidence and respond to issues as they arise.
Education and training are critical to building community capacity for supported decision-making and improving outcomes for carers and the people they care for. Carers NSW considers this an area in which the NSW Ageing and Disability Commission could play an important role, with appropriate resourcing, by working alongside Carers NSW and other relevant organisations to provide ongoing support to carers to implement supported decision-making in practice.
4 Carers NSW (2025), 2024 National Carer Survey.
d) the role and functions of the Ageing and Disability Commission (the Commission) in relation to supported decision-making
e) possible changes to the functions of the Commission, including legislative amendments to the Act, to enhance supported decision-making
f) measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances
A role for the Ageing and Disability Commission in advancing a supported decision-making pilot
In light of the systemic and informational barriers outlined above, Carers NSW considers there is a clear opportunity to strengthen the role of the Ageing and Disability Commission. While the Commission’s current functions are primarily directed towards safeguarding and responding to abuse, neglect and exploitation under the Ageing and Disability Commissioner Act 2019, Carers NSW believes there is scope, with additional funding, for the Commission to play a broader role in supporting the development of a supported decision-making framework in NSW.
This role could be undertaken alongside relevant NSW Government and representative bodies and should include maintaining appropriate decision-making safeguards, providing practical information and guidance to carers, and supporting early intervention approaches.
In our 2022–23 Pre-Budget Submission, Carers NSW recommended investment in a pilot program to build the capability of carers, service providers and community members to support people to exercise their will and preferences. Carers NSW maintains that such a pilot would be a practical and evidence-informed step that could progress alongside any legislative reform.
The pilot should provide structured training and practical tools on decision-specific capacity, facilitating supported decision-making conversations, and applying best-practice approaches to everyday decisions across health, disability, aged care and related sectors. It should also support the development and evaluation of accessible resources, training modules and decision-support frameworks that could later be rolled out more broadly across NSW. Sustainable change requires both community-level capability building and clear operational guidance so that carers, service providers and NSW agency staff can implement supported decision-making consistently and safely.
Carers NSW calls on the Committee to advocate for legislative amendment to the Ageing and Disability Commissioner Act 2019 to give the Commission an explicit and proactive function to promote and operationalise supported decision-making across NSW, supported by dedicated resourcing for practical guidance, workforce training and system navigation tools.
Recommendations:
Carers NSW recommends the Committee on NSW Ageing and Disability:
- Recommend that the NSW Government amend the Ageing and Disability Commissioner Act 2019 to expand the functions of the Ageing and Disability Commission to include a proactive role in promoting and implementing supported decision-making across NSW, and provide ongoing funding for statewide guidance, training resources, system navigation support and referral pathways for carers, service providers and agencies.
- Recommend that the Ageing and Disability Commission embed recognition of carers as key supporters in supported decision-making in alignment with the NSW Carers (Recognition) Act 2010, including by promoting clear expectations for services to involve carers, with the person’s consent, and to provide consistent access to relevant information, processes and safeguards.
- Recommend the development of a consistent NSW Supported Decision-Making Framework, co-designed with people with disability, people who are ageing, carers and key service systems, to establish minimum practice standards, workforce guidance, information-sharing protocols and safeguards, so that supported decision-making becomes the default approach and substitute decision-making is used only where necessary and proportionate.
- Recommend that the NSW Government endorse and fund a supported decision-making pilot, with the involvement of the Ageing and Disability Commission, to build the capability of carers, providers and service systems through training, practical tools and resources that can be evaluated and scaled across NSW.
Conclusion
Carers NSW supports reforms that embed supported decision-making as the default, least restrictive approach for adults with disability and people who are ageing in NSW, and ensure that substitute decision-making is used only where necessary and proportionate. To achieve this, NSW must address inconsistencies in supported decision-making practice, reduce information and service navigation barriers, and better recognise and equip carers who provide decision-making support every day.
Carers NSW encourages the Committee to recommend a strengthened and more proactive role for the Ageing and Disability Commission, supported by additional funding, workforce capability-building and improved referral pathways. Carers NSW welcomes the opportunity to provide further evidence or consultation to assist the Committee’s work.