Submission 35 — Side By Side Advocacy — Supported decision-making for adults with disability and older people in NSW | External submission

Submission

No 35

SUPPORTED DECISION-MAKING IN NSW

Organisation: Side By Side Advocacy

Date Received: 20 March 2026

side by side advocacy••• “”“Submission: Inquiry into Supported Decision-Making in NSW

Submitted by: Side By Side Advocacy

Contact: Kim Roots

Email:

Terms of reference

Inquiry into supported decision-making

That, pursuant to section 28B(1)(e) of the Ageing and Disability Commissioner Act 2019 (the Act), the Committee conduct an inquiry into and report on supported decision-making for adults with disability and older people in NSW, with particular reference to:

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

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

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

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

g) other related matters. 1

Executive Summary

Side By Side Advocacy welcomes the opportunity to contribute to the Inquiry into supported decision-making under section 28B(1)(e) of the Ageing and Disability Commissioner Act 2019.

This submission is informed by long-term advocacy with adults with intellectual disability across New South Wales (NSW). Many of the people we support have experienced institutional or segregated environments, trauma histories, limited freely given relationships, and both formal and informal substitute decision making.

We consistently observe that supported decision-making is relational, not procedural. This requires:

time to build trust and consistent relationships
trauma-informed practice
clear role boundaries and communication expectations
accessible information and experiential learning opportunities
demonstration of reliability and follow-through
recognition of the dignity of risk
preventative engagement before crises occur
sustainable funding that recognises complexity. Across NSW systems we continue to observe:
risk-averse cultures that default to protective override
substitute decision-making occurring without sufficient exploration of supported alternatives
limited recognition of the incremental learning many adults with disability have missed
crisis-driven responses rather than preventative planning
underutilisation of funded supports due to gatekeeping or lack of trust. 2

Reform should:

embed supported decision-making principles in legislation and policy
require documented exploration of supported decision-making before substitute arrangements
ensure substitute decision-making is proportionate, time-limited and subject to restoration pathways
strengthen the Ageing and Disability Commission’s guidance and oversight role
fund long-term relational advocacy
include proactive interventions that extend beyond personal decisions about care, services and finances, and apply equally to civic participation, governance and leadership.

Without structural reform and sustained investment in relational practice, substitute decision-making will continue to operate as the default regardless of legislative intent.

Introduction Side By Side Advocacy welcomes the opportunity to contribute to the Inquiry into supported decision-making for adults with disability and older people in NSW.

We are funded to provide:

Citizen Advocacy, Individual Advocacy, Self Advocacy, Family Advocacy and Systemic Advocacy through the National Disability Advocacy

Program

Supported Employment Advocacy
Appeals Support Advocacy. We also undertake smaller projects as funding permits. This has included research into inclusive governance models in partnership with Southern Cross University, with a focus on increasing meaningful inclusion of people with intellectual disability on Boards and management committees.

Our submission is informed by extensive, long-term advocacy engagement with people with intellectual disability, including people who communicate without using words or other formal systems.

Side By Side started more than 30 years ago as institutions were devolving in the local area. John Roarty, a man who lived in a local institution called Weemala, recognised the specialist needs of people with intellectual disability and spearheaded the organisation’s beginning. All our work is grounded in the learning that began in this period.

Our experience shows that supported decision-making is not simply a legal mechanism or procedural framework. It is a relational practice that requires time, trust, communication support, and often trauma-informed approaches.

Lived experience of people seeking support for decision-making (Term of Reference a)

Many people accessing our advocacy support:

Have few, if any, freely given relationships
Primarily interact with paid service providers
Have lived in institutional or semi-devolved institutional settings, including group homes
Communicate in informal or non-standard ways that are not consistently understood by people who do not know them well
Live with multiple diagnostic labels
Have experienced abuse, neglect, isolation and multiple traumas
Have very limited financial resources
Experience personal change at a pace not reflected in standard outcome measures
Benefit from trauma-informed specialist advocacy and complementary counselling
Require flexible and accessible advocacy supports. 4

Many have also experienced lifelong barriers to decision-making opportunities, including:

Segregated schooling
Low expectations about their capacity
Decisions routinely made “for” rather than “with” them
Funding systems that restrict choice
Decisions withheld or vetoed by family members or professionals
Having essential contextual information witheld
Limited opportunities to learn through ordinary life experiences. As a result, many people have had fewer opportunities to:
Make mistakes safely
Learn from consequences
Build confidence in their own judgement
Experience their preferences being respected. Supported decision-making therefore often involves addressing not only a current decision, but the cumulative impact of restricted life experience.

The relational nature of supported decision-making Our experience across more than 3 decades of advocacy practice is that supported decision-making is fundamentally relational rather than procedural.

There is no single model that applies uniformly. The type and level of support required varies depending on factors such as:

The person’s life history, including institutionalisation and trauma
Communication style, including informal communication
Age and stage of life 5

The nature and risk profile of the decision
Emotional context, including anxiety, grief, excitement or fear
The presence or absence of trusted relationships. Major or complex decisions, particularly those that are difficult to reverse, often require time, scaffolding and incremental exposure to options.

In our experience, supported decision-making may involve:

Trying options in low-risk ways
Using accessible language
Visual aids and other communication supports
Seeing and interacting with real alternatives rather than abstract descriptions
Role play or scenario discussion
Time for reflection between conversations
Observing non-verbal responses and emotional reactions
Researching options and consequences together. We have observed that critically important relational elements are often overlooked in policy frameworks such as:
Building confidence over time
Demonstrating that commitments will be followed through
Explicit teaching where life experience gaps exist
Developing a communication partnership
Respecting existing family dynamics while centring the person. These aspects of supported decision-making require time and relational continuity and cannot be reduced to procedural steps.

Trust and the development of decision-making capacity Trust is central to effective support for decision-making.

Across our advocacy work we observe that people often test new supporters with relatively small matters before raising more significant concerns. Communication may initially be indirect, fragmented or cautious.

Many people have learned through experience that expressing preferences leads to dismissal or override. Sensitive or complex matters may only be raised once a person feels confident that they will be taken seriously.

When people experience:

Being listened to
Having their views taken seriously
Having limits explained respectfully
Support to problem solve practical pathways to chosen options
Seeing agreed actions followed through they are more likely to:
Seek support earlier
Express will and preference in ways that others can engage with
Participate in collaborative problem solving
Recover from disappointment without disengaging
Share more complex or private concerns. For this reason, short-term or transactional service models can undermine supported decision-making. Relational continuity is critical.

Trauma-informed support for decision-making Many people who seek advocacy assistance have experienced:

Family violence
Sexual assault 7

Chronic neglect
Institutional trauma
Repeated breakdown of relationships or support arrangements. Trauma can shape preferences and responses in ways that may be misunderstood by others.

For example, individuals may:

Request female-only support workers
Express heightened safety concerns
React strongly to perceived control
Use language that elicits a duty of care response from professionals
Acquiesce when asked face to face, then avoid or refuse to participate later
Experience attachment anxiety
Demonstrate distrust of professionals. Supported decision-making must therefore be trauma informed. This includes:
Allowing partial disclosure
Respecting privacy
Explaining confidentiality boundaries clearly
Helping people articulate preferences without forcing disclosure of traumatic experiences
Avoiding pathologising trauma responses. Without trauma-informed approaches, supported decision-making processes may inadvertently reproduce earlier harms.

Barriers to implementing supported decision-making (Term of Reference b)

Across legal, financial, health, education, employment and care systems in NSW we observe a range of structural and practical barriers.

Structural barriers

Risk-averse organisational cultures
Default reliance on substitute decision-making
Poor understanding of legislative and policy frameworks in critical settings
Limited understanding of supported decision-making in practice
Funding models that do not allow time-intensive relational work
Fragmentation between systems. Practical barriers
Limited availability of trained advocates
Insufficient trauma-informed practice
Inflexible service delivery models
Lack of accessible information and communication supports
Crisis-driven responses rather than preventative approaches. Supported decision-making is often time-intensive and relational. Current funding and compliance frameworks frequently prioritise short-term measurable outcomes that do not reflect the pace at which trust and decision making capacity develop.

Dignity of risk and informal substitute decision-making Substitute decision-making frequently occurs informally within service systems.

For example, we have observed situations where:

Services assumed a person was being scammed and sought to block a relationship outright
Family members vetoed opportunities in the name of safety
Support workers routinely completed tasks for a person rather than supporting skill development.

In these situations, supported decision-making may instead involve:

Assuming adulthood and legitimacy of the person’s desire
Breaking decisions into smaller stages
Safeguarding practical risks while preserving choice
Building protective steps around a chosen course of action
Allowing a person to experience disappointment without humiliation. Even when outcomes are imperfect, people often emerge from these experiences feeling respected rather than controlled.

See Appendix A for deidentified examples. Note some details have been changed to protect anonymity.

Distinct experiences of Aboriginal and culturally and linguistically diverse communities

(Term of Reference c)

We do not claim specialist expertise in Aboriginal or culturally and linguistically diverse (CALD) advocacy, but have observed additional barriers including:

Mistrust of formal systems
Language and communication barriers
Cultural misunderstandings in assessments of “capacity”
Limited culturally safe advocacy options. 10

Supported decision-making must be culturally grounded and community informed. Standardised models are unlikely to be effective across diverse communities.

Role and functions of the Ageing and Disability Commission (Term of Reference d)

The Ageing and Disability Commission has a critical safeguarding role in protecting older people and adults with disability from abuse, neglect and exploitation within family, home and community settings.

In the context of supported decision-making, the Commission demonstrates a number of strengths. We particularly note the increasing emphasis within the abuse helpline on reports being made with or by the person affected, and the Commission’s focus on practical problem solving rather than complaints resolution. The continuation of the Official Community Visitor function, transferred from the NSW Ombudsman, remains an essential safeguard for people with communication and decision-making support needs.

These functions align with key elements of supported decision-making practice. Their impact could be strengthened by embedding a more consistent and explicit understanding of supported decision-making across all aspects of the Commission’s work.

As described earlier, supported decision-making is relational and time intensive. Current constraints within the Commission, particularly in relation to time and training, limit how consistently this approach can be applied. The ongoing relational work required to support decision-making is more often undertaken by advocacy organisations and other trusted supporters.

Strengthening the Commission’s role would involve improving its capacity to recognise, facilitate and complement supported decision-making, rather than attempting to replace relational supports.

This includes:

Helpline accessibility

Addressing barriers presented by digital interfaces and phone menu systems - the phone menu for the helpline is not accessible for many people with more complex support needs
Substantial work to support alternative pathways for engagement beyond standard call processes

Official Community Visitor function

Increasing the frequency and duration of visits
Allowing time to build trust and understand individual communication styles
Testing assumptions over multiple visits and, where appropriate, with people who know the person well
Improving awareness among people with disability and service providers that this function exists and how it can be accessed

Investigations

Adapting processes to the person’s communication style, preferred environment and pace
Allowing sufficient time to understand will and preferences while avoiding unnecessary delays
Noting whether a person has had support to make decisions Police referrals
Carefully considering the context and consequences of referral
Balancing safeguarding with the person’s rights and long-term wellbeing
Recognising that people may have had limited opportunity to build decision-making experience
Acknowledging that police may not have the specialist skills required to engage with people with complex or intersecting vulnerabilities.

We are encouraged by:

Appropriate referrals to advocacy for people experiencing or at risk of harm
The Commission’s existing education work
The proactive approach of the current Commissioner. This provides a strong foundation to build on, particularly through a more explicit and consistent focus on supported decision-making across all functions.

Possible changes to enhance supported decision-making (Term of Reference e)

Legislative and policy reform in NSW should strengthen the conditions needed for supported decision-making to operate as the default approach for adults with disability.

As reflected in our advocacy experience, supported decision-making is not a discrete intervention. It depends on relationships, time, communication and trust.

Reform should include:

Embedding supported decision-making principles explicitly in legislation and policy, including recognition of the rights, will and preferences of people with disability
Requiring demonstrable exploration of supported decision-making options before substitute decision-making mechanisms are imposed
Strengthening understanding of the presumption of capacity and the decision-specific nature of capacity across service systems
Expanding the Commission’s education role in the area of health to address confusion about decision-making roles (such as “next of kin”, “guardian” and “person responsible”), which are often used interchangeably despite having distinct legal meanings

Ensuring supported decision-making resources, including skilled human supports, are available across hospital and community health settings, including embedding the principles of supported decision making in major infrastructure projects like statewide electronic medical record systems
Strengthening education requirements for legal practitioners preparing enduring powers of attorney, enduring guardianship and wills for adults with decision making support needs, including safeguards against instruments that effectively grant plenary substitute decision-making powers
Strengthening oversight and safeguards in relation to Public Guardian and financial management arrangements
Better resourcing and training of the Office of the Public Guardian and the Estate Management teams within NSW Trustee and Guardian so that substitute decision making, when necessary, can meaningfully engage with the will and preference of the person
Funding long-term relational advocacy and community-based roles that support the development of trusted networks and decision-making supports
Supporting inclusive governance initiatives that enable people with intellectual disability to participate meaningfully in organisational and civic decision-making.

Our research with Southern Cross University indicates that inclusion within governance structures often remains symbolic. While policies may exist, they do not consistently translate into meaningful participation in decision-making.

Supported decision-making principles should extend beyond personal decisions about care, services and finances, and apply equally to civic participation, governance and leadership.

Further reform is needed for people with intellectual disability living in group home settings. This group is at heightened risk of social isolation, with networks often limited to paid staff, co-residents and family members.

Research and practice indicate that:

Dedicated roles focused on building social networks and community connections are effective
Sustained resourcing is required to achieve long-term outcomes
Deliberate community engagement strategies are necessary to avoid ongoing exclusion and institutionalisation.

Within this context, the Official Community Visitor function could play an expanded role in:

Identifying people experiencing profound social isolation
Monitoring the development of social networks and community connections
Assessing whether meaningful opportunities for relationship-building are being supported.

People identified as highly isolated could be linked with community-based supports such as citizen advocacy, social connectors or facilitators to establish foundational networks of support.

To strengthen accountability, self-determination indicators could be incorporated into Community Visitor monitoring frameworks. These may include:

The presence and quality of person-centred planning
Evidence that services are acting on the person’s will and preferences
Efforts to build and sustain unpaid relationships
Opportunities for participation in decisions affecting the person’s life These reforms would support a shift from systems that primarily manage risk and substitute decision-making, to systems that build the relationships, supports and community connections necessary for genuine self determination.

Ensuring substitute decision-making is limited and appropriate (Term of Reference f)

Substitute decision-making should operate only as an alternative approach in appropriate and limited circumstances.

Where it occurs, it should be:

A last resort
Time-limited wherever possible
Timely
Subject to regular review
Accompanied by robust oversight
Paired with active efforts to restore decision-making authority. Too often, substitute decision-making arrangements become effectively permanent by default.

Without adequate investment in supported decision-making — including skilled facilitators, communication supports, time, stability and trusted relationships — substitute decision-making will continue to function as the practical default rather than the legal exception.

Advocacy practice realities In our experience:

Many people with high support needs have no one else available to assist them with decision-making
Advocacy must be flexible and, where possible, face-to-face in familiar environments
Communication aids and visual materials are often required
Multiple stakeholders are frequently involved in decision processes
Intake systems and policies must account for complexity 16

Structured training and information sharing between advocates is essential.

Very often, people who need support for decisions have only service workers in their life who do not have sufficient skill and/or knowledge of the person and who experience conflicts of interest.

Across NSW there are limited advocacy resources, while demand increasingly involves urgent, complex and life-altering issues.

Supported decision-making is not a quick or low-cost intervention. For many people it is foundational to safety, dignity and participation in society.

Conclusion Supported decision-making is not just a legislative issue. It requires changes in practice, culture and resourcing across systems.

For many adults with disability who:

have experienced institutionalisation
live with trauma
lack freely given relationships
have complex communication and support needs supported decision-making relies on long-term relationships, trauma-informed practice and flexible, adequately resourced supports.

Independent advocacy is central to this. For many people, advocates are the only independent and consistent support available to assist with decision making, build trust over time, and ensure that will and preferences are recognised and acted on.

Without these conditions, and without sustained investment in independent advocacy, substitute decision-making will continue as the practical default, regardless of legal intent.

Reform must move beyond principle and policy and invest in the relational infrastructure, including independent advocacy, that supports people to develop, express and act on their will and preferences over time.

Side By Side Advocacy welcomes the opportunity to provide further evidence to the Committee.

Appendix A

Illustrative examples based on our advocacy experience

The following anonymised examples illustrate the practical realities of supported decision-making in advocacy practice.

Example 1: Building trust before major decisions

A man in his thirties with intellectual disability living in a group home sought advocacy support regarding several concerns about daily routines and communication with staff.

During early meetings he raised small matters such as access to activities. Over time, and after observing that the advocate followed through on agreed actions, he gradually raised more significant concerns about his living arrangements and relationships with particular staff members.

The individual communicated in ways that were sometimes indirect and required time and familiarity to understand. Multiple meetings were needed to clarify his preferences and explore options. Visual supports and visits to alternative housing options were used to help him understand potential choices.

The process took several months before the person felt confident enough to formally express his wish to explore different accommodation arrangements.

This example illustrates that supported decision-making often requires sustained relational engagement before people feel safe to raise significant matters. A short-term or crisis-only service response would likely have missed the underlying issue.

Example 2: Supporting dignity of risk in personal relationships

An adult woman with intellectual disability sought advocacy support regarding a new personal relationship. Some service providers expressed concern that the relationship might involve financial exploitation and initially moved to restrict contact.

Rather than immediately seeking to block the relationship, a supported decision-making approach was used. The advocate worked with the person to:

discuss potential risks and boundaries
explore strategies for protecting personal finances
identify trusted people she could check in with
clarify what she wanted from the relationship. Accessible information and repeated conversations were used to help the person understand possible scenarios and consequences.

While the relationship ultimately did not continue long term, the individual reported feeling respected and taken seriously in the process. She remained engaged with advocacy support and was more willing to seek advice in later situations.

This example highlights how safeguarding and supported decision-making can operate together. Protective steps can be implemented without removing the person’s opportunity to make their own choices.

Example 3: Rebuilding trust and expanding choice

An adult man with intellectual disability and autism lived with an ageing parent in social housing. The majority of his time was focused on work in a segregated employment setting. He often communicated rapidly. Service providers were observed to dismiss his speech as incoherent.

His parent informally made most major decisions, including housing and use of services. Funded supports were largely unused due to distrust of external providers.

Through sustained advocacy:

Trust was built over many informal visits
Communication was slowed and clarified through patient listening
Small, interest-based supports were introduced
A supporter with shared interests was identified
Incremental experiences were scaffolded 20

Written records of future housing preferences were created. Key themes:
Informal substitute decision-making can occur within loving family systems
“Proof” of follow-through builds trust
Small, interest-based supports can open broader life opportunities
Planning before crisis increases future options. Example 4: Communication support and recognition of decision making authority

An adult man with physical disability and complex health needs was admitted to hospital due to complications with a medical device used for nutrition.

This hospital admission followed ongoing advocacy support from an experienced advocate.

The man communicates using eye gaze technology and does not use speech. He can also type short messages using assistive communication technology.

During his admission, a medical procedure was recommended to address the issue. However, the procedure was later cancelled following discussions between medical staff and a family member. The man himself had not been consulted.

Cancelling the procedure was recognised by the medical team as a step that would lead to death within days.

The man was his own legal decision maker, and his decision-making capacity had not been questioned. However, he was unable to be understood by the treating team because his specialised communication device had not been set up in the hospital environment and the medical team was unfamiliar with his other communication methods.

An advocate who had been supporting him attended the hospital to assist with communication and raise concerns that he had not been consulted about decisions regarding his treatment.

With communication support, the man was able to express his wishes clearly to the treating team and confirm that he wanted the procedure to proceed. The advocate also provided information to staff about decision-making law and the importance of distinguishing between communication support needs and decision-making capacity.

Following this intervention, the treating team recognised the man as the decision maker for his own treatment and recorded this in his hospital notes.

This example highlights the risks faced by people with disability who communicate informally in hospital settings. Without appropriate communication support and advocacy, critical decisions may be made without the participation of the person concerned.