Submission to the NSW Parliament Committee on Ageing and Disability Inquiry into Supported Decision Making for Adults with Disability and Older People in NSW

Submission No 12

SUPPORTED DECISION-MAKING IN NSW

Organisation: Ethnic Community Services Co-operative

Date Received: 12 March 2026

Partially Confidential

Ethnic Community Services

Submission to the NSW Parliament Committee on Ageing and Disability

Inquiry into Supported Decision Making for Adults with Disability and Older People in NSW

Submitted by:

redacted

Dina Petrakis —- CEO Ethnic Community Services (ECS)

redacted redacted Date: March 2026

1. Summary of recommendations

Recommendation 1. Establish a legislated requirement for culturally responsive supported decision making across all NSW disability and aged care systems, with the Ageing and Disability Commission empowered to oversee, monitor and enforce compliance.

Recommendation 2. Provide sustained, long‑term funding to CALD‑specific organisations to deliver bilingual and bicultural supported decision‑making assistance including through the development of resources.

Recommendation 3. Require all disability, aged care, health, education and legal services in NSW to provide translated materials, use trained interpreters appropriately, and conduct culturally informed capacity assessments as mandatory components of supported decision making.

Recommendation 4. Strengthen the Ageing and Disability Commission’s mandate to lead CALD outreach, cultural capability, and equity monitoring across all supported decision‑making systems.

Recommendation 5. Require that substitute decision making be used only after all culturally appropriate supported decision‑making strategies have been demonstrably attempted and exhausted.

2. About Ethnic Community Services (ECS)

Ethnic Community Services (ECS) is a long‑established, community‑based organisation with more than 45 years of continuous service to culturally and linguistically diverse (CALD) and culturally and racially marginalised (CARM) communities across NSW. Over this time, ECS has built a strong reputation as a trusted, specialist provider with deep cultural knowledge, long‑standing community relationships, and a bilingual and bicultural workforce that reflects the communities we serve. Our service model is grounded in cultural safety, relational practice, and a commitment to equitable access across disability, aged care, early intervention, family support, and community development.

ECS’s experience supporting people with disability is extensive and spans individual support, advocacy, community education, and system navigation. Our teams work closely with people who require assistance to understand service systems, articulate their goals, and participate in decisions about their supports. This includes supporting people to prepare for and engage with the NDIS, coordinating with health and community services, and building confidence through culturally tailored information and education. Our bilingual and bicultural staff bring specialist capability in cross‑cultural communication, strengths‑based engagement, and working with families and community networks in ways that respect cultural norms while upholding individual rights. This depth of practice has positioned ECS as a key partner for disability providers, multicultural organisations, and government agencies seeking to improve access and inclusion for CALD people with disability.

ECS also has significant experience supporting older people from CALD backgrounds across the aged care continuum. Our work includes assisting older people to navigate My Aged Care, understand assessment pathways, and make informed choices about home care and community supports. We deliver bilingual and bicultural social support, wellbeing programs, and community connection activities that help older people maintain independence, cultural identity, and social participation. Our teams also work closely with carers, families, and community groups to strengthen understanding of aged care options and to support older people to express their preferences and participate in decisions about their care. Through decades of practice, ECS has developed strong capability in culturally responsive engagement with older people, including those with limited English proficiency, low digital literacy, or complex health and social needs.

Taken together, ECS’s long history of practice provides the Inquiry with a rich evidence base about what effective supported decision-making looks like for CALD people in both disability and aged care contexts. It also offers practical insights into the workforce capabilities, and system settings required to ensure that adults with disability and older people from diverse cultural backgrounds can genuinely exercise choice and control.

3. Introduction

Supported decision making is a fundamental human right, grounded in the principle that every person should be supported to make their own decisions rather than having decisions made for them. In simple terms, it means providing the time, communication tools, and relational support a person needs so they can understand information, consider their options, express their preferences, and remain in control of decisions about their life. For adults with disability and older people, this approach recognises that decision‑making ability is not fixed; it grows when the right supports are present.

In a CALD context, supported decision making must also ensure that people can participate in ways that reflect their language, culture, migration history, and preferred ways of communicating. For many CALD adults with disability and older CALD people, meaningful participation is only possible when information is provided in their preferred language, when interpreters or bilingual/bicultural workers are involved, and when cultural norms around family roles, trust, autonomy, and collective decision making are understood and respected. Supported decision making in CALD communities therefore requires more than simply offering choices, it requires culturally safe communication, culturally informed practice, and support that recognises how cultural identity shapes how people interpret rights, risks, and responsibilities.

When these supports are absent, the right to supported decision making becomes inaccessible. Language barriers, cultural misunderstandings, and unfamiliar or inflexible service systems can prevent people from understanding their options or expressing their preferences. As a result, CALD people with disability and older CALD people are disproportionately misunderstood, excluded, or placed in substitute decision‑making arrangements, not because they lack capacity, but because systems fail to communicate with them in ways they can understand.

ECS has raised these concerns repeatedly over many years, alongside other CALD‑focused organisations across NSW and Australia. The issues outlined in this submission are not new, and the solutions are well known. What has been consistently missing is sustained, coordinated and adequately funded investment in the frontline resources required to make supported decision making genuinely accessible for CALD communities. Without long‑term commitment to bilingual workforce development, culturally responsive practice, translated materials, and community‑based partnerships, inquiries risk revisiting the same questions while the underlying inequities remain unchanged. Meaningful reform requires ongoing, comprehensive and culturally grounded investment, not short‑term projects or piecemeal initiatives.

Case Study 1: Culturally Informed Realignment of Decision‑Making Authority

Background: A young participant with disability relied on his mother as his primary decision maker. Over time, the mother’s mental health declined to the point where she was no longer able to make timely or informed decisions on his behalf. As a result, the participant was unable to attend school or access essential NDIS supports because his mother was unresponsive to service providers and unable to engage in required processes.

Culturally responsive engagement with the family: ECS staff initiated a series of respectful, culturally informed discussions with the mother, the grandmother and the NDIS planner to explore safe and appropriate pathways forward. These conversations acknowledged the family’s cultural norms around collective responsibility and the importance of maintaining decision‑making authority within the family unit wherever possible.

Exploring supported options: Together, the group considered several pathways, including applying for public guardianship or transferring decision‑making authority to another trusted family member. The mother expressed discomfort with the idea of a public guardian, reflecting both cultural expectations and concerns about external authority, and agreed that the grandmother, who lived with and cared for the participant, was best placed to assume the role.

Outcome: Once the grandmother became the recognised decision maker, the participant was promptly enrolled in school and began accessing NDIS support services. ECS’s Support Coordinator continued to provide clear, accessible information to the grandmother, enabling her to make informed decisions and navigate systems confidently

4. Access to Supported Decision Making

CALD people with disability often struggle to access meaningful decision‑making support because mainstream systems are not built with their cultural or linguistic realities in mind. Information is typically provided only in English and delivered through technical language, unfamiliar concepts, and service models that assume a high level of system literacy.

Many people therefore come to ECS already confused, overwhelmed, or misinformed, not because they lack ability, but because they have never been given clear, culturally or linguistically accessible explanations. In these situations, language barriers are routinely misread as cognitive limitations, and CALD clients report being judged, dismissed, or treated as though they lack capacity simply because they cannot communicate in the way the system expects.

Many are left relying on family members or community networks who may themselves lack accurate information or the confidence to engage with government systems. The absence of a properly funded bilingual workforce means that ECS and similar organisations are left to fill

systemic gaps without the resources required to meet the scale of need. This structural inequity directly undermines CALD clients’ ability to understand their rights, weigh their options and participate meaningfully in decisions about their own lives.

Many CALD families make decisions collectively, and this culturally grounded practice is often misinterpreted by mainstream services as coercion or incapacity, leading to assessments that overlook the person’s actual will and preferences. At the same time, it is equally common for CALD individuals to not want family or community members involved in their decision making, particularly when the issue is sensitive, private, or likely to create pressure, obligation or conflict. Some fear community judgement or worry that family members may dominate conversations or lack the knowledge and confidence to support them effectively. These two realities sit side by side: collective decision making is a legitimate cultural norm that must be respected, but services must also recognise that many CALD clients prefer a neutral, culturally competent supporter, such as a bilingual or bicultural worker, who can provide safe, confidential, and culturally informed assistance without the complexities of family or community dynamics.

The term family must be understood in its culturally grounded sense, not its narrow Western legal definition. Many ECS participants come from cultural backgrounds where family extends well beyond parents and siblings to include grandparents, aunties, uncles, cousins and, in some cases, community elders who hold recognised roles in guidance and decision making. These broader kinship structures are embedded in legal, social and regulatory frameworks in many countries of origin, where it is entirely normal, and expected, for extended family members to participate in or lead decision‑making processes. By contrast, Australian systems often apply a restricted legal definition of family that excludes these culturally legitimate relationships. This mismatch can lead services to misunderstand who the person trusts, who they defer to, and who they wish to involve in decisions about their life. Recognising culturally grounded definitions of family is therefore essential to ensuring that supported decision making reflects the person’s actual social world, rather than imposing Western assumptions that limit who is considered an appropriate support.

At the same time, mainstream services frequently dismiss or misunderstand CALD clients because they do not recognise or value their cultural frameworks, communication styles or lived experiences. Everyday interactions that lack culturally responsive can leave CALD people feeling scrutinised, judged or treated as though their questions are inconvenient. This erodes trust quickly and makes people reluctant to disclose their needs or assert their preferences. In contrast, ECS’s bilingual and bicultural workers provide the relational safety and cultural grounding that enable clients to speak in their first language, use familiar concepts and express what matters to them.

Clients often wait long periods for an interpreter, and when one is finally available the support is frequently inadequate for the complexity or sensitivity of the discussion. Many interpreters lack training in the specific cultural context required, are booked for too little time, or are expected to use formal, professional language that is inaccessible to clients with low literacy or limited English. Sessions can feel rushed, with interpreters speaking quickly or moving through information

without checking whether the client has genuinely understood what is being asked of them. These delays, combined with limited culturally responsive and communication that does not meet the client’s needs, leave many CALD clients without the clarity, confidence or support required to participate meaningfully in decisions about their own lives.

By contrast, bilingual and bicultural workers offer a far more effective and culturally safe form of communication support. They understand not only the language, but the cultural norms, decision‑making practices, family dynamics, and lived experiences that shape how CALD people interpret information and make choices. They can explain concepts in culturally meaningful ways, check understanding, build trust, and support the person to articulate their will and preferences, not just translate words. For many CALD people with disability and older CALD people, bilingual/bicultural workers are the only pathway to genuine supported decision making, because they provide the cultural and relational context that interpreters alone cannot.

Many CALD families do not want to rely on family members or people from their own community to support them with decision making, even when services assume they will. For some, involving family can create pressure, conflict, or a sense of obligation that makes it harder to express their true preferences. Others worry about privacy, community judgement, or sensitive information becoming known within close‑knit cultural networks. Many also recognise that their family members may not have accurate information, may lack confidence engaging with government systems, or may unintentionally dominate conversations with professionals. As a result, CALD clients often prefer support from bilingual or bicultural workers who understand their cultural context but are not embedded in their personal or community relationships. This provides a safer, more neutral space where they can ask questions freely, explore options without fear of judgement, and make decisions that genuinely reflect their own will and preferences.

Without this cultural safety, supported decision making becomes superficial. Clients may appear to agree with decisions simply to avoid conflict or embarrassment, rather than because they genuinely understand or consent. Meaningful supported decision making is only possible when people feel safe enough to express uncertainty, ask questions and challenge assumptions, and for CALD communities, that safety is inseparable from culturally responsive practice.

—CALD clients are more likely to lose autonomy because systems fail to communicate with them in ways that support genuine understanding, not because they lack the ability to make decisions” redacted: s47F Multicultural Aged Care Services Program Manager

These challenges are further compounded by fear and stigma. Many CALD people with disability avoid seeking help because past experiences with government systems, whether in Australia or overseas, have taught them they are likely to be misunderstood, judged or dismissed. For those who have experienced trauma, discrimination or fear of authority, approaching a service provider can feel unsafe. When language barriers are added, the risk of being misinterpreted or not believed becomes even greater.

What services often label as ‘disengagement’ is, in reality, a rational response to systems that have repeatedly failed to communicate in culturally respectful or linguistically accessible ways. Without investment in culturally appropriate communication, bilingual staff and trauma‑informed practice, CALD clients are left without a safe pathway to seek help, resulting in further isolation and exclusion from decision‑making processes.

‘Services often label CALD families as ‘non‑compliant’ when they are actually under‑supported” redacted: s47F ECS Strategic Program Manager

5. Challenges Across Key Service Systems

Health, education, NDIS, aged care, legal and financial systems are among the most challenging for CALD clients because they rely on English‑only communication, complex documentation and rigid, bureaucratic processes that take no account of cultural norms or language needs. Interpreters, when available at all, are often untrained, inappropriate for the context, or booked for too little time, while professionals frequently use jargon, speak too quickly, or fail to check whether clients have genuinely understood what is being asked of them. CALD clients are routinely pressured to make decisions on the spot, without adequate explanation or the culturally expected opportunity to consult family or community. Positive experiences do occur, but only when individual workers take extra time, use plain language and collaborate closely with CALD‑specialist organisations, exceptions that highlight the broader systemic inequity rather than evidence of a functioning system.

‘Clients are often pressured to make decisions without adequate explanation or time to consult family or community. Positive experiences occur only when individual workers take extra time to overcome systemic gaps” Dina Petrakis ECS CEO

6. Role of the Ageing and Disability Commission

Awareness of the Ageing and Disability Commission remains extremely low across CALD communities because information about its role, powers and pathways for support is not delivered through trusted cultural channels or community‑embedded networks. When CALD clients do engage with the Commission, they often feel intimidated, uncertain of their rights, and unsure how to navigate processes that are not designed with cultural or linguistic accessibility in mind. This results in limited and uneven engagement, with many CALD people effectively excluded from the protections the Commission is intended to provide. To address this inequity, the Commission must adopt a culturally responsive approach that includes multilingual outreach, culturally trained staff, and formal partnerships with CALD organisations. Only through sustained, community‑embedded engagement can the Commission ensure that CALD people with disability and older CALD people have equitable access to its services and safeguards.

7. Legislative and Policy Considerations

Current legislative and policy settings assume Western, individualistic models of decision making and fail to recognise the collective decision‑making norms, cultural obligations and structural disadvantage experienced by many CALD communities. To address this gap, the Ageing and Disability Commission’s mandate must be strengthened so it is explicitly responsible for ensuring that all supported decision‑making resources, processes and safeguards are culturally and linguistically accessible, and for monitoring CALD equity across systems. This requires embedding essential safeguards, mandatory culturally responsive, mandatory translated materials, and mandatory use of trained interpreters—so that CALD people with disability and older CALD people can participate meaningfully and safely in decisions that affect their lives.

Case Study 2: Soft‑Entry Pathways to Supported Decision Making for CALD Adults with Disability

Background: B is a 35‑year‑old man of Chinese background with a dual diagnosis that includes intellectual disability. He lives with his family, who provide day‑to‑day support and play a central role in his life. B has consistently expressed a desire to increase his independence and participate in activities that extend beyond his immediate family environment.

Soft‑entry engagement through culturally safe programs: B first engaged with ECS through bilingual/bicultural social groups designed to provide culturally safe, low‑pressure opportunities for CALD adults with disability to build confidence, social connection and familiarity with service providers. Over time, B developed trusting relationships with ECS staff, who were able to observe his strengths, interests and emerging goals in a culturally responsive environment.

Identification of decision‑making potential: Through ongoing engagement, ECS staff identified that B possessed the capability and motivation to take on a more active role in community participation. Staff recognised that supporting B to contribute to the organisation of a major community event would align with his goals for independence, build his confidence, and provide a meaningful opportunity for supported decision making.

Culturally informed negotiation with family: Given the family’s central role in B’s life and decision‑making processes, ECS undertook careful, culturally informed discussions with his parents. These conversations were facilitated by trusted bilingual/bicultural workers and supported by respected community leaders. The purpose was to explain the opportunity, address concerns, and ensure the family felt safe, respected and fully informed. The trust built through B’s participation in ECS programs was critical in enabling the family to consider a new level of independence for their son.

Outcome: With the family’s informed agreement, B successfully participated in organising a professional community event. He contributed to planning tasks, engaged with staff and volunteers, and demonstrated strong capability when provided with culturally safe support. The experience strengthened his confidence, expanded his social networks, and reinforced his sense of autonomy.

7. Substitute Decision Making

CALD clients are disproportionately placed in substitute decision‑making arrangements because language barriers are routinely misinterpreted as a lack of capacity, rather than a lack of accessible communication. Cultural norms around collective decision making are also frequently misunderstood by mainstream services, with family involvement wrongly viewed as undue influence instead of a legitimate and culturally grounded decision‑making process. These misunderstandings lead to unnecessary and inappropriate substitute arrangements that could be avoided with culturally informed capacity assessments, access to bilingual advocates, and sufficient time for supported decision making. Strengthening these supports would significantly reduce the over‑use of substitute decision making for CALD people with disability and older CALD people, ensuring that substitute arrangements are used only when all culturally appropriate options have genuinely been exhausted.

8. Conclusions and Recommendations

Effective supported decision making relies on time, trust and relational engagement rather than rushed or transactional interactions, allowing people to ask questions, seek clarification and reflect before deciding. It requires recognising the person’s cultural context, family roles and preferred ways of making decisions, and ensuring these are respected rather than treated as barriers. Ultimately, systems must adapt to the person, through culturally informed communication, flexible processes and genuine collaboration, rather than expecting the person to adapt to rigid, Western‑centric service models.

• Recommendation 1. Establish a legislated requirement for culturally responsive supported decision making across all NSW disability and aged care systems, with the Ageing and Disability Commission empowered to oversee, monitor and enforce compliance.

  Supported decision making must be delivered in ways that reflect the cultural, linguistic and social realities of the people using the system. Embedding cultural responsiveness as a statutory obligation ensures that services cannot rely on ad‑hoc goodwill or inconsistent local practice. Assigning clear responsibility to the Ageing and Disability Commission provides a single point of accountability for setting standards, auditing compliance, and intervening where CALD people are excluded or placed at risk of inappropriate substitute decision‑making arrangements.

• Recommendation 2. Provide sustained, long‑term funding to CALD‑specific organisations to deliver bilingual and bicultural supported decision‑making assistance including through the development of resources.

  CALD organisations such as ECS play an irreplaceable role in bridging cultural and linguistic gaps that mainstream services cannot fill. Their bilingual/bicultural workforce provides the relational trust, cultural grounding and communication support essential for genuine participation. Long‑term, recurrent funding—not short‑term projects—is required to build and maintain this specialist workforce and ensure CALD people with disability and older CALD people can access culturally safe supported decision making in particular when discussing end of life planning and support for carers.

• Recommendation 3. Require all disability, aged care, health, education and legal services in NSW to provide translated materials, use trained interpreters appropriately, and conduct culturally informed capacity assessments as mandatory components of supported decision making.

  CALD people cannot participate meaningfully if they cannot understand the information provided or if their cultural context is misunderstood. Translated materials must be standard

practice across all systems. Interpreters must be trained in disability, aged care and trauma‑informed practice, not simply bilingual. Capacity assessments must be culturally informed so that language barriers, collective decision‑making norms or unfamiliarity with Western systems are not misinterpreted as lack of capacity. These measures are foundational safeguards, not optional enhancements.

• Recommendation 4. Strengthen the Ageing and Disability Commission’s mandate to lead CALD outreach, cultural capability, and equity monitoring across all supported decision‑making systems.

  The Commission must adopt a proactive, community‑embedded approach to ensure CALD people understand its role and can safely access its protections. This requires multilingual outreach, culturally trained staff, and formal partnerships with CALD organisations. The Commission should also be responsible for monitoring CALD equity across systems, including tracking barriers, complaints and outcomes. Without an expanded mandate, CALD communities will remain under‑represented and under‑protected.

• Recommendation 5. Require that substitute decision making be used only after all culturally appropriate supported decision‑making strategies have been demonstrably attempted and exhausted.

  CALD people are disproportionately placed in substitute arrangements because language barriers and cultural norms are misinterpreted as incapacity. Systems must demonstrate that bilingual support, culturally informed assessments, adequate time for decision making, and involvement of trusted family or community members have been provided before substitute arrangements are considered. Substitute decision making must be a genuine last resort, not a default response to cultural or linguistic misunderstanding.

END OF SUBMISSION