Supported Decision-Making in NSW

Submission
No 36

SUPPORTED DECISION-MAKING IN NSW

Organisation: Community Industry Group
Date Received: 23 March 2026

The Committee on Ageing and
Disability
Supported Decision-Making in NSW
March 2026
SUBMISSION

NityVOICE / INFLUENCE / LEADERSHIP

ACKNOWLEDGMENT OF COUNTRY

Community Industry Group acknowledges the traditional custodians of this land, and their Elders past, present and future. We acknowledge and respect their continuing culture, the world’s oldest living culture, and the contribution they make to the life of this region and our country.

We acknowledge that we live and work on Aboriginal land and recognise the strength, resilience and capacity of Aboriginal people.

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About Community Industry Group

CI Group is the peak body working for community services and organisations in southern NSW. We support community organisations, promote expertise and innovation in community development, foster industry development and advocate for social justice.

For 30 years, CI Group has taken a leadership role in the local community services sector. We regularly engage with those organisations, services, and individuals who work with individuals, families, and communities experiencing disadvantage and vulnerability. We also advocate on behalf of community organisations and vulnerable communities to raise awareness of the issues which are impacting service delivery and affecting the lives and outcomes of individuals, families and communities experiencing disadvantage.

Our members include not-for-profit (NFP) service providers who deliver:

• Residential Aged Care
• In-home supports, including CHSP and Home Care Packages
• Homelessness Supports
• Women’s and Domestic Violence Support Services
• Child and Family Services
• Youth Services
• Disability Services
• Generalist Community / Neighbourhood Centre

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Introduction

Community Industry Group welcomes the opportunity to provide a submission to the NSW Legislative Council Committee on Ageing and Disability inquiry into supported decision making for adults with disability and older people in New South Wales.

Our members, particularly those in the Illawarra Disability Alliance (IDA), are strongly in favour of supported decision-making as an approach that upholds the rights, dignity, and autonomy of individuals. However, providers regularly report challenges when trying to apply these principles in practice. These challenges often arise from complex interactions between systems, limited understanding of roles and responsibilities, increasing regulatory pressures, and barriers within mainstream services such as health, financial institutions, and legal processes.

Consultation with members also highlighted broader structural issues within the current system. Providers described a landscape where people often have either no formal decision-making supports in place or move directly to formal guardianship arrangements. There is very little middle ground between these two points. Members consistently emphasised the need for more practical and accessible supports that help individuals exercise genuine choice and control before substitute decision-making becomes necessary.

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Key Recommendations

Based on consultation with our members (including members of the Illawarra Disability Alliance), Community Industry Group makes the following recommendations to strengthen supported decision-making in NSW:

• Recommendation 1: Strengthen education and guidance on supported decision-making
  Targeted education should be provided to families, substitute decision makers, service providers and system stakeholders to improve understanding of supported decision making and the legal roles and limits of guardianship. Education should be provided when official guardianship is appointed so that guardians clearly understand the scope and responsibilities of the role.
• Recommendation 2: Establish minimum standards for accessible information across all government and service systems
  Government departments, regulators and service systems should be required to provide information in accessible formats. The principle of presumed capacity should underpin how information is designed and delivered. If a person can participate in even part of a decision, they should be supported to do so.
• Recommendation 3: Provide clearer guidance on balancing risk, autonomy, and duty of care
  Service providers require clearer frameworks to support individuals to make decisions that involve risk while also meeting regulatory and safeguarding obligations. Our members report that the current regulatory environment lacks clarity and places providers who genuinely support self-determination at risk.
• Recommendation 4: Strengthen safeguards to ensure a person’s will and preferences remain central
  Mechanisms should ensure individuals are consulted and meaningfully involved in all decisions that affect them, including where guardians or substitute decision makers are appointed. Decision makers should be required to demonstrate that they have directly engaged with the person before acting.

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• Recommendation 5: Expand practical supports that enable supported decision-making before guardianship is pursued
  The current system lacks intermediate supports that help individuals and families navigate complex decisions without moving directly to formal substitute decision-making. NSW should develop and fund a graduated model of decision support that strengthens supported decision-making before guardianship becomes necessary.
• Recommendation 6: Improve cross-system understanding of supported decision-making
  Mainstream systems including health, legal, financial and government services, require stronger awareness and capability in supported decision-making. Specialist expertise should be embedded within key systems such as hospitals and financial institutions to support better practice.
• Recommendation 7: Ensure the Commission is visible, accessible, and proactive for diverse communities
  The Ageing and Disability Commission should play a stronger preventative role through equitable access, community outreach, culturally appropriate resources, and co-design with multicultural and Aboriginal organisations.
• Recommendation 8: Invest in time and funding for supported decision-making conversations
  Effective supported decision making takes time. Our members report that the time needed for these conversations is increasingly limited due to funding and administrative pressures. Government should ensure there is dedicated time for workers, assessors, and care partners to engage meaningfully with individuals, explain options, build trust, and involve individuals in decisions about their care and supports.

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Response to Terms of Reference

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

Consultation with our members, including engagement with the Illawarra Disability Alliance, indicates that while supported decision-making is widely recognised as a guiding principle, older people and adults with disability often face significant barriers when trying to exercise meaningful choice and control in practice.

Many people rely heavily on trusted relationships to navigate complex systems and decisions. However, older people and adults with disability may experience social isolation, limiting the informal networks available to support them. This is particularly the case for individuals without family, those with estranged family relationships, or those whose family members may not have the knowledge or capacity to provide genuine support.

As one participant shared during consultation:

“None of us here typically make big life decisions without checking in with other people. But what happens a lot fora lot of our folks is that because those social connections can be less, that can mean the pathways often go to substitute decision-making and all these formal systems.”

Our members also highlighted that the ability to exercise decision-making is frequently constrained by systemic barriers rather than by an individual’s own capability. A key theme raised through consultation was the principle of presumed capacity: if someone can participate in even part of a decision, they should be supported to do so. However, current legal and service systems often operate in a binary way - either a person is considered to have full capacity, or they are treated as unable to participate in decision-making at all.

As another participant explained:

“If somebody can participate in even 10% of that decision-making process, they should be afforded the opportunity to. It’s quite difficult when our systems are quite rigid, especially when it comes to risk or legal frameworks.”

Access to clear and accessible information also emerged as a significant barrier. Without information provided in plain English, Easy Read, community languages, and other accessible formats, individuals may be unable to meaningfully participate in decisions affecting their lives, regardless of their intrinsic capacity. Our members noted that even well-

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educated individuals from culturally diverse communities can experience information overload and confusion when navigating aged care and disability systems.

For older people from multicultural communities, engagement with supported decision-making often occurs only at a point of crisis, rather than as part of a proactive, planned process. One participant described this experience as:

“The whole process of it comes at such a crisis time. It’s not a proactive piece. It’s there’s something that’s happened right now and right this second and now I need to respond. And so that added layer of crisis on top of navigating a system that they don’t understand is another barrier.”

Our members also described the aged care and disability systems as highly fragmented and difficult to navigate. Participants reported confusion about the roles of advocates, service providers, and government bodies, making it difficult for individuals and families to know who to trust or where to seek support.

These experiences demonstrate that barriers to supported decision-making are often structural rather than personal. To ensure older people and adults with disability can genuinely exercise choice and control, reforms must focus on strengthening accessible information, proactive engagement, and flexible, person-centred supports. Our recommendations aim to address these systemic challenges, promoting pathways that prioritise presumed capacity, reduce reliance on crisis-driven decision-making, and build the social and professional networks needed for meaningful participation.

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(b) barriers to implementing models for supported decision-making across legal, financial, health, education, employment, and care systems in NSW

Our members consistently reported that supported decision-making in NSW can be difficult to put into practice within highly regulated service environments. Older people and adults with disability often face tension between exercising choice and control and navigating systems that prioritise organisational risk and compliance. As one member explained:

“There’s this grey area of balancing risk, choice and control, and a person’s decisions… where can we have more clarity in that grey? Because it can get into a situation where we are enacting supported decision-making with a risk lens, with as much documentation as we think we have, but at the end of the day, if something critical happens, we’re still having to do a lot of investigation and justification.”

Members highlighted how restrictive practices regulation intersects with supported decision-making. In New South Wales, adults with disability often need formal guardian consent for restrictive practices. Many people who could be supported by family do not have formal guardianship in place, meaning they must go through NCAT processes even when a willing and capable family supporter is available. Our members noted that this creates pressure to take on guardianship unnecessarily.

Our IDA members also raised concerns about accountability, particularly regarding disability Support Coordinators. Support Coordinators play a key role in supporting participants identify and engage with suitable services. This should always be done with the person with disability. However, consultation reveals that Support Coordinators can sometimes implement significant decisions, such as changing a service provider, without discussing them with the adult with disability or their family, limiting opportunities for genuine participation.

Members identified practical barriers across systems:

• Health services: Hospitals and emergency departments often bypass supported decision-making frameworks and default to family members or formal substitutes.
• Financial institutions: Adults with disability may lack pathways to make wills or manage financial decisions, leading to legal and financial complications for families.
• Legal services: Legal frameworks frequently rely on a binary model of capacity, leaving no room for partial capacity or supported participation.

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• Government digital systems: Platforms such as Medicare and My Health Record present significant challenges for people with communication or cognitive support needs.

The Justice Advocacy Service, part of the Intellectual Disability Rights Service, was highlighted by members as a positive example of supported engagement in legal contexts, though access is generally reactive and only available once someone is already involved in the legal system.

Members also reflected on aged care funding arrangements, which can limit the time care partners spend with older people and reduce opportunities for meaningful supported decision-making:

“Care partners - they’re not paid to spend time with someone anymore. Everything’s billed by every 15-minute incremental phone call. So, it’s clear to see the government’s not really putting any funding in towards actually giving people the care management they deserve.”

These examples demonstrate that barriers to supported decision-making are often systemic, rather than personal. Addressing them will require reforms that enable our members to genuinely exercise choice and control, in line with the principles of supported decision-making in NSW.

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

Consultation with our members highlighted additional barriers faced by older people from culturally and linguistically diverse (CALD) and Aboriginal communities. These barriers go beyond language and reflect deep structural, cultural, and systemic factors.

In many CALD communities, decision-making is understood as a collective family or community process rather than an individual act. While collective decision-making can provide strong informal support networks, it may also create tensions with Australian legal frameworks that emphasise individual authority. In some cases, older people defer entirely to family:

“It’s not traditional practice that it’s only the decision of the older person. For some communities, the family make the decision. The older person says: just tell me what to do. I’ll sign whatever.”

Our members noted that limited knowledge about available services is a key factor driving family decision-making. When older people and their families are unaware of supports, decisions are often made by whoever has the most system knowledge, typically a younger, English-speaking family member. As one member observed:

“A lot of times the decision-making is pushed onto the family members because they can make the decisions, they understand it, or they navigate the digital world. So, I have to wonder: is it still supported decision-making, or has the decision actually been taken out of their hands?”

The risk of elder abuse within family contexts was also raised. Financial decision-making, in particular, can be a point of vulnerability, where unequal access to financial information creates conditions for exploitation. Our members described cases in which older community members experienced financial abuse from family members who had become aware of their assets.

Ageism within communities was another significant issue. Families may dismiss the decision-making capacity of older people based solely on age, regardless of their actual ability:

“They just don’t believe that their parents, as elderly, can make the right decision. So ‘I will do this for you. I know better’”

For older CALD and Aboriginal community members, the stakes of decision-making often extend beyond immediate choices to encompass deeply held cultural, spiritual, and religious values. Our members described situations in palliative care and end-of-life

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planning where cultural and religious practices - such as preferences for medications, spiritual advisors, and dying rituals - were not adequately considered, and where the older person’s preferences differed from those of family decision-makers. In Aboriginal communities, connecting older people with their community, Elders, or cultural networks can be an important part of supported decision-making, but this is often underutilised, particularly for those without close family.

A further structural barrier identified by our members is the limitation of the Commission’s jurisdiction to government-funded aged care services. Older people from CALD or Aboriginal communities who access privately arranged care (more common where family care is the norm or formal systems are unfamiliar) are effectively outside the Commission’s scope, representing a significant and unaddressed gap.

Our members also recommended using trusted community channels to reach CALD and Aboriginal communities more effectively than printed materials. Community-language radio, local Aboriginal groups, and other established networks could be engaged to disseminate information about rights and supported decision-making frameworks.

Finally, terminology was highlighted as a practical barrier. Our members observed that simpler language translates more effectively. The term supporter (now used in the Aged Care Act 2024) is easier to translate and understand across languages and cultural contexts than terms such as representative or advocate:

“Simplifying language is something I think we’re always going to be in support of. Translating ‘representative’ is difficult. Translating ‘supporter’ is a lot easier - that kind of language lends itself to translations much better.”

These insights from our members demonstrate that older people from CALD and Aboriginal communities face distinct structural, cultural, and systemic barriers to supported decision-making in NSW. Addressing these challenges will require culturally safe, inclusive, and proactive approaches that respect collective decision-making practices, strengthen community connections, and provide accessible information in culturally appropriate formats.

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

Our members consistently reported limited engagement with the Ageing and Disability Commission in relation to supported decision-making. The Commission was generally described as playing a reactive, harm-response role rather than a preventative or enabling one. As one member explained:

“Their role is really more reactive. It’s not a lot of proactive work in this space. It’s very much: harm has happened, now we’re going to ask you a lot of questions.”

Some members noted that the Commission can play a useful intermediary role in specific situations, for example helping to identify gaps in decision-making arrangements before a formal guardianship application is made. However, this function is underutilised and not consistently available.

Members also raised concerns about the accessibility of the Commission’s information. As one member observed:

“Accessible information is the cornerstone of supported decision-making. When I looked at the Commission’s website, I couldn’t find a lot of information in an accessible format to help people understand what their role was.”

Another limitation noted by our members is the Commission’s restriction to government-funded services. The Commission does not assist people who are not receiving government-funded care services. This creates a gap for older people and adults with disability who access care through private arrangements or family provision.

Our members also highlighted the need for better promotion and outreach. Many people are unaware of the Commission’s existence or role, and members suggested that proactive engagement through community-based pathways could help raise awareness, build trust, and ensure that people can access the Commission’s services when needed.

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

Consultation with our members, including the Illawarra Disability Alliance, identified a range of opportunities for the Commission to strengthen its role in supported decision-making. While providers and community organisations emphasised that the Commission could take a more proactive role without major legislative changes, some targeted amendments may still be beneficial.

Key opportunities include:

• Developing and distributing accessible, plain-language information about supported decision-making, guardianship, and the Commission’s role, including in community languages and through trusted, community-based channels.
• Providing guidance for families and substitute decision-makers at the point of NCAT appointment, including education on the limits of guardianship and the ongoing obligation to reflect the will and preferences of the person.
• Expanding outreach to Aboriginal communities, culturally and linguistically diverse (CALD) communities, and people not currently accessing government-funded services.
• Strengthening preventative and educational engagement with mainstream systems, including hospitals, financial institutions, and legal services.
• Establishing a consistent framework for regional engagement so that there is equitable access to Commission guidance and support.

Participants also stressed the importance of measuring outcomes, not just implementing policies. As one provider asked:

“It’s not just ok that we implemented a policy on supported decision-making. Does it work? Can we see the effect of this in the sector?”

The principle of presumed capacity was identified as a foundational concept that should underpin the Commission’s guidance framework and public communications. Providers recommended that the Commission actively advocate for this principle across all systems that interact with older people and adults with disability.

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

Our members raised concerns that substitute decision-making, particularly guardianship, is sometimes pursued prematurely, without adequate supports being explored first. In many cases, individuals have no formal decision-making supports in place before guardianship is considered, creating a significant gap between independent decision-making and formal substitute arrangements. A specific structural driver of this was highlighted by IDA roundtable participants: New South Wales is one of the only states that requires a formally appointed guardian to approve restrictive practices. This regulatory requirement can create a pipeline into guardianship for people whose decisions could otherwise be appropriately supported by family or community members.

Where guardianship is appointed, providers reported that the role and its limits are not consistently understood. A common pattern is for family members or guardians to treat the appointment as granting broad authority over all aspects of the person’s life, rather than applying it to specific circumstances. This was illustrated by a roundtable example:

“We have someone who is identified as fluid in his sexuality. He likes to wear nail polish and eye makeup. His mother has full guardianship but doesn’t want him to wear that out in public. It’s this real balance between his will and preference and his human right to express what he wants, but then the mother comes in and says, no. Ultimately, we respected the will and preference of the participant.”

Members also reported instances where Public Guardians make decisions without direct consultation with the person concerned, even when the individual has clearly expressed their preferences to providers. A particularly concerning pattern involves decisions made on conflict-of-interest grounds, resulting in long-established service relationships being terminated without engagement with the person:

“We’ve had the Guardian make decisions about services, a flat decision saying we’re ceasing your service because there’s a conflict of interest, without any engagement with the person. These are long-established relationships.”

Our members noted significant regional variation in how Public Guardians exercise their role. Providers operating across multiple regions described markedly different approaches, with some guardians engaging actively with providers and seeking evidence, while others act unilaterally. This inconsistency creates unpredictable outcomes for both individuals and providers.

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On a positive note, several members highlighted improvements in how NCAT conducts guardianship hearings over the past 12 to 18 months. Hearings are increasingly person-centred, with panels directing questions to the person themselves rather than only to family or legal representatives:

“The focus in hearings now is really with the participant and not everybody else in the room. Questions are directed straight to them. I actually haven’t had a bad one recently, both the Illawarra and Nowra have been extremely great just recently.”

This positive shift should be acknowledged and encouraged. Providers recommended that a similar person-centred approach be extended to substitute decision-making processes outside formal hearings, alongside clearer accountability mechanisms when decision-makers fail to consult with the individual.

Members also raised the safety dimension of poor substitute decision-making. Analyses of NDIS Commission investigations into deaths in service reveal a pattern where inadequate substitute decision-making intersects with adverse outcomes:

“When you actually read the cases and dissect them, there was always an intersectionality between families or guardians and their decision-making process, making decisions that they thought were in the best interest of their loved one. Things like terminating relationships with dieticians, delays in speech reviews, mealtime management not being followed. In every one of those cases, you could see this intersectionality of the guardian instilling what they believed was the best interest of their person.”

This evidence reinforces the need for stronger accountability mechanisms and clearer guidance on the limits of substitute decision-making authority, ensuring that it remains an appropriate and limited measure.

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Conclusion

Community Industry Group, in partnership with the Illawarra Disability Alliance, strongly supports the principle that adults with disability and older people should be supported to make decisions about their own lives wherever possible. Consultations for this submission have reinforced both the importance of this principle and the significant gap between it and current practice.

Supported decision-making is often undermined by structural, systemic, and cultural factors, including inadequate intermediate supports, regulatory frameworks that push people prematurely into guardianship, mainstream systems that default to substitute decision-making, limited accessible information, and a lack of cultural competency across formal systems.

For people from CALD and Aboriginal communities, these barriers are compounded by language, ageism, trust, and family dynamics that current policy and service design do not adequately address. Our members and the IDA highlighted that without targeted reforms, these inequities continue to restrict the autonomy, well-being, and safety of older people and adults with disability.

We call on the Committee to acknowledge these challenges and to ensure reforms are sufficient to address the issues identified. Efforts should focus on strengthening supported decision-making across all relevant systems, promoting person-centred approaches, embedding cultural accessibility, and ensuring substitute decision-making is genuinely a last resort. By addressing these systemic and cultural barriers, the Committee can help make sure that the rights, preferences, and will of older people and adults with disability are respected in practice, not just in principle.

Community Industry Group looks forward to continued engagement with the Committee as these reforms are considered.

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For More Information:

E: info@cigroup.org.au
PH: (02) 4256 4333
W: communityindustrygroup.org.au

Community Industry Group
Lot 26 Mortlock Ave,
Port Kembla, 2505
ABN 95 589 148 519

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