Submission 23 — Mr Michael Bleasdale — Supported decision-making for adults with disability and older people in NSW

Submission

No 23

SUPPORTED DECISION-MAKING IN NSW

Name: Mr Michael Bleasdale

Date Received: 13 March 2026

Submission to the NSW Parliament

Inquiry into Supported Decision-Making in New South Wales

Committee on Ageing and Disability

Submitted to: NSW Parliament Committee on Ageing and Disability

Inquiry: Supported Decision-Making in NSW

Date: March 2026

1. Introduction

Personal Involvement

I welcome the opportunity to submit my views on this matter and do so as a private citizen. My views have been formed, however, as a result of significant involvement with people with intellectual disability, people with psychosocial disability, and older people throughout the 42 years of my service to the community. I will attempt to summarise this experience here in order to provide context to my observations and recommendations.

Until 2001 I worked as a direct support worker and service manager providing drop-in support to adults with intellectual disability who were living in regular, unstaffed houses in the community. Despite operating following the Commonwealth Disability Services Act 1986 this type of service was innovative to the extent that there was not a funding category able to be applied to it until the late 1980s. My colleagues and I supported people in their everyday lives, and this necessarily involved supporting them to make decisions. Sometimes these choices impacted significantly on their lives, such as relationships, forming families and moving homes, but while others were more mundane the clients were always making decisions, sometimes supported but increasingly for themselves. Their ability to do this meant that most (not all) clients were not under guardianship or financial management orders, and the recognition by staff of this ability, even when poor choices were made, instilled a culture of respect in the service which has driven my interest and advocacy for what is now known as Supported Decision Making (SDM).

Since the late 1990s I have been keenly interested the individualised funding (IF) of services for people with disability, which is now the principle underpinning the National Disability Insurance Scheme. From around 1997 I was involved in the international discussion (including involvement in the planning and presentation of three international conferences) about what IF could achieve for people with disability in terms of their self-determination and their inclusion in community, when support was tailored to not only their needs but also to their personal and lifestyle preferences. I

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drove three major submissions to the Productivity Commission’s Inquiry into Disability Care and Support (2011) two for People with Disability Australia (and #524) and In Control Australia (link). These submissions highlighted the need for a specific arm of support to be available to participants of the (now) NDIS to assist with the increased decision-making that would necessarily accompany a scheme which championed “choice and control” and notionally attached funding to the identified wishes and needs of the individual. Often described as “brokerage” this was to be, importantly, separate and distinct from other funded arms of the NDIS, with the aim of assisting participants to visualise and articulate their wishes and needs and, to the extent required, assist them in managing and monitoring the supports they received and varying their requirements over time. This was never incorporated into the design of the NDIS and the Local Area Coordinators (which initially could have been regarded as a sub-type of “brokers”) was developed as an adjunct to a rigid system of bureaucratic delegation where in practice participants are required to “fit” into artificially constructed funding categories – which both negates the principles inherent to IF and stifles the very decision-making that would greatly increase the wellbeing and capacity of participants. Various models of SDM have been designed specifically to assist people with decisions about their supports such as Microboards, but the NDIS has not supported these in any systematic way nor any other mechanisms which would actively enable participants to control the supports they receive and command the way that their funding could enrich their lives.

From 2018 until the end of 2020 I was the CEO of the ACT Disability and Carer Advocacy Service (ADACAS) which provided funded Advocacy to older people and people with disability. When I took over at ADACAS the project team there had dev eloped a range of resources (including an app for mobile phones) that provided information about SDM and how it may be deployed by services and families to support older people and people with disability whose cognitive capacity may be declining or perceived to be inadequate to responsibly make decisions for themselves. The app we developed was launched at the Elder Abuse Awareness conference in Brisbane in 2019, where the utility of SDM as one of the tools to combat growing abuse of powers of attorney and enduring guardianship orders was presented and discussed.

I now run a small consulting business, Capacity Services, with my colleague Murray Coates, and we are currently nearing the end of a project with the Older Persons Advocacy Network (OPAN) and Disability Advocacy Network Australia (DANA) to develop an Australian Standard for Advocacy (AS 5391:2024) which is capable of being used to certify funded Advocacy Services. This Standard emphasises, among other things, the need for Advocates to respect the will and preference of their clients and to utilise the principles of SDM to encourage them to advocate for themselves as far as possible.

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Understanding the context of the Inquiry

Supported decision-making is an increasingly recognised mechanism for ensuring that older people and people with disability obtain and/or retain autonomy over decisions affecting their lives. The concept reflects international human rights standards and contemporary policy frameworks relating to ageing and disability, including the principle that all adults should be presumed capable of making decisions and have the right to be supported to exercise that capability. It also has been applied in some jurisdictions (in particular Canada) to assist in the resolution of legal matters which require informed consent for their determination by people who may otherwise have been placed under guardianship.

Supported decision-making recognises that some individuals may require assistance— such as communication support, explanation of information, or trusted advisers—but should remain the ultimate decision-maker wherever possible. In New South Wales, however, legal and service systems still largely rely on substitute decision-making mechanisms such as guardianship or financial management orders. While these mechanisms provide important safeguards, they can unnecessarily remove autonomy if applied prematurely or without adequate exploration of supported decision-making options.

The introduction of the NDIS in 2013 could have heralded a sea-change in this thinking and the building of a system of supports tailored to the diversity of need nationwide, to assist participants with the decisions they should have been making routinely about the level and nature of support they received. This lost opportunity means that the responsibility for building this capability into our systems lies elsewhere and this submission argues that NSW, under the leadership of the Ageing and Disability Commissioner, should take a systematic approach to embedding supported decision making across legislation, services and practice.

2. Lived Experience of People Seeking Decision-Making Support (Term of Reference a)

My experience in this area is considerable, in that so many situations in which people with cognitive impairment find themselves (both older people and people with disability) appear to be designed to provide maximum convenience to those staffing them and in so doing tend to deny the possibility of client choice and control – and by extension the practice of making decisions.

Common experiences include:

• Professionals speaking primarily to family members rather than the individual concerned.

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• Information being presented in inaccessible formats.

• Decisions being made quickly during crises without adequate support to understand options.

• Assumption that complex decisions or those which involve legal or financial matters should be handled by a substitute decision-maker.

• The presumption that a specific diagnosis or label (eg intellectual disability, dementia etc) automatically equates to lack of capacity

The practice of SDM is not simply laying out a number of options for a person to choose from (although that would be a reasonable starting point and something denied to many under the NDIS and in aged care), it is a skilled approach which encourages creative thinking and even “dreaming” which is then refined to identify goals and eventually the means to achieve them. Assistance to envision these goals can be done by a variety of people. In my experience this was done by my colleagues and I as service professionals, but it can and should also be done by Support Coordinators under current NDIS arrangements.

Practices which deny the opportunity for SDM undermine dignity and autonomy. Decision-making capacity for everybody should be understood as decision-specific, contextual, and potentially fluctuating, rather than a fixed personal trait, and the practice of supporting decision-making a widely accepted practice that is undertaken by most if not all members of the community in their daily lives and in situations where choices have significant consequences. Supported decision-making can include simple supports such as:

• Information and resources, and communication aids
• trusted supporters helping interpret information
• time and the right environment in which to canvas and consider options
• peer or advocacy support, including professional support When these supports are provided, many individuals who might otherwise be considered incapable of making decisions can participate meaningfully.

3. Barriers to Implementing Supported Decision-Making (Term of Reference b)

Contemporary social policy concerning older people and people with disability has at its core the principles of choice and control and person-directed support. It is recognised also that support for making these choices and decisions is necessary. But as I mentioned in the introduction nothing was provided by the NDIS to either encourage or support this practice and the availability of decision supporters remains a lottery to participants, based on their family and supporter networks and the quality of the

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services and Support Coordinators they engage. Consistency in service delivery is no longer possible under the NDIS and if the skills associated with SDM are to be embedded within the provision of everyday support this will have to be addressed through improved training and the requirement for this to be a competency of every support worker. The home-based aged care workforce also needs to better understand that their work importantly should focus on assisting people rather than completing tasks on their behalf, and that this necessarily involves a conversation about what needs to be done, how it is to be done, and what aspects of the work can still be undertaken by the older person.

Training is needed on:

• clearly understanding how to implement “working with” rather than “doing for” in everyday support

• communicating with participants and older clients about what support is required and how it is to be provided

• assessing decision-making ability with supports

• communicating complex information accessibly

• recognising undue influence versus legitimate support There are also structural and legislative challenges with a significant reliance upon supported decision-making mechanisms to efficiently address the growth in the population (mainly due to ageing) of people whose capacity may be questioned. Powers of attorney and enduring guardianship arrangements are actively encouraged in all jurisdictions, and it is evident that many of these are being invoked either prematurely of in ways that preclude the opportunity to assist and support people to make decisions. In NSW guardianship legislation and related frameworks still prioritise substitute decision-making models, and supported decision-making is not yet consistently recognised in legislation.

Key challenges include:

• absence of a formal legal status for decision supporters
• limited statutory recognition of support networks
• reliance on guardianship orders when less restrictive alternatives could be used Other Australian jurisdictions have begun incorporating supported decision-making explicitly into guardianship frameworks, demonstrating the feasibility of legislative reform, and there are some tentative steps taking place here in NSW, at least in pilot form.

The lack of progress in NSW regarding the implementation of SDM practice within guardianship frameworks is indicative of a broader cultural and institutional reluctance to recognise the benefit of providing the time and resources necessary to

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support people in a range of decisions and choices. This is based on the perception of greater efficiency if decisions are made by substitute decision-makers who are deemed more capable than those for whom they are deciding, and that this is inherently less risky that relying upon decisions made by someone whose decision-making capacity is under question. This prejudice does not take into account the time and resources taken up with disputes that occur when a person challenges the validity of decisions taken on their behalf and the mediation often required to bring parties together again after contentious decisions have been made. It also ignores the damage done to the autonomy of individuals as their confidence is undermined by having their right to choose and decide taken away from them. In turn this can lead to greater dependency and a requirement for more restrictive accommodation and financial options which are likely to more costly.

There is also a marked lack of funding for SDM supports, with SDM often relying on informal networks such as family members. Individuals without strong support networks may struggle to access meaningful support. Formal programs—such as decision-making supporters, advocates, or peer networks—are limited.

4. Experiences of Aboriginal People and People from Culturally and

Linguistically Diverse Backgrounds

(Term of Reference c)

I am not currently involved sufficiently with these populations to provide a response based on experience, so can only speak to the principles. Supported decision-making must recognise cultural differences in decision-making processes, and resource these appropriately. In many First Nations communities, decision-making occurs collectively within kinship networks. Systems that assume individualised decision-making may fail to accommodate these cultural norms. In order to establish appropriate mechanisms of support (and assuming funding is made available) genuine co-design of those supports must be achieved with the communities within which the SDM is to occur. This is likely to lead to innovations in practice which should be allowed to flourish and good practice shared across communities to rapidly expand capability and capacity.

Similarly, people from culturally and linguistically diverse backgrounds may experience:

• language barriers

• lack of culturally appropriate information

• reliance on family interpreters rather than independent support This should elicit policy responses including:

• culturally competent decision-making supports 6

• interpreters trained in supported decision-making frameworks
• engagement with community organisations and co-design of appropriate practices (again, adequately funded).

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

The NSW Ageing and Disability Commissioner has an important role to safeguard the rights of older people and people with disability in that state, and is well placed to take on the role of championing and resourcing SDM. Both the aged care and disability support systems are now funded and administered at the national level by the Australian Government, but there is a growing recognition, within discussion about the NDIS at least, of the need for there to be supports provided at the state level to ensure basic services are delivered in a way that is inclusive and do not necessarily require specialist interventions to enable people with diverse needs to participate. SDM is a ubiquitous requirement for people to be able to participate in decisions related to their education, health, housing and justice and in other areas of community life where responsibility falls to the state to deliver. Given that guardianship and financial management also falls within NSW’s responsibilities it makes sense for a state-based Commission to take the lead role in developing, implementing and monitoring the use of SDM across relevant areas of general service delivery, as well as to assist in the facilitation of individual client/participant decisions in the specialist aged care and disability service systems.

The Commission could play a stronger role in:

• promoting supported decision-making frameworks
• providing education and guidance to service providers
• developing resources for supporters and decision-makers
• monitoring systemic barriers.

6. Potential Changes to the Commission’s Functions (Term of Reference e)

Assuming the acceptance that the Commission is best placed to champion SDM in NSW a range of functions would need to be amended in legislation to facilitate this, including:

1. Promotion and education a. develop guidelines and training on supported decision-making 7

2. Oversight a. monitor the use of substitute decision-making orders b. identify systemic patterns of over-reliance

3. Advice and assistance a. support individuals to establish decision-support arrangements b. provide guidance to families and service providers

4. Systemic advocacy a. Report to Parliament on progress toward supported decision-making reforms.

5. Ensuring Substitute Decision-Making Is Used Only as a Last

Resort

(Term of Reference f)

This submission has identified a strong human rights basis for an increased emphasis on SDM and the need for resources to achieve its much greater deployment in the community. This is not to deny the need for substitute decision-making for some individuals now and into the future. A legislative fix is required to ensure that substitute decision-making is used as a last resort (which it is currently) by mandating the exploration of SDM prior to making orders, as far as is practicable – and that under funding or unavailability of SDM resources not be used as a valid reason to side-step this exploration. Making amendments to the NSW Guardianship Act 1987 would serve to make this a requirement, and the Act should also include the requirement of SDM principles to be mandated as part of good guardianship practice, with reporting on what has been done and an evaluation of impact regularly p[provided for those people under guardianship and financial management orders (both public and private).

8. Recommendations This submission supports the recommendations already made in the submission the NSW Council for Intellectual Disability (NSWCID):

9. Amend the ADC Act to give the ADC responsibility to develop a NSW Government SDM Framework and provide leadership on how to practice and promote good support for decision making as an alternative to substitute decision making.

10. Fund the ADC to create dedicated positions and skilled roles to guide best practice in SDM across government and the community, build resources and tools with a focus on early intervention and capability building of the person and their supports.

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3. Investigate and report on the issues impacting a person’s decision- making ability which lead to the appointment of guardians and financial managers, in particular the Public Guardian and NSWTAG.

4. Fund Advocacy agencies to provide decision making support and provide training and guidance on SDM for individuals and their families/informal networks and the wider sector including service providers and government agencies.

In addition I make the following recommendations:

5. Amend the NSW Guardianship Act 1987 to mandate the use of supported decision-making frameworks and practices in the application processes for guardianship and financial management orders, and in the implementation of those orders should a substitute decision-maker be appointed.

6. Create formal recognition for decision-supporters and stipulate how they operate in legal and formal service environments.

7. Implement a community education program which promotes SDM and targets professionals in health, finance, law and the social services.

8. Research, co-design, fund implement culturally appropriate decision-support resources for First Nations people and people from culturally diverse communities.

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