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Circles of Support and Microboards: Results of an environmental scan

Version: 1

Date: 26th July 2024

Author: redacted: s47F - personal privacy and redacted: s47F - personal privacy

Division: Evidence and Practice Leadership Branch

Page 1 of 97

Contents

• Circles of Support and Microboards: Results of an environmental scan 1
  • Contents 2
  • Disclaimer 5
  • Acknowledgements 5
  • Suggested Citation 5
  • Abbreviations 6
  • Glossary 6
  • 1. Executive Summary 7
  • 2. Background and NDIS context 9
  • 3. What we did 10
    • 3.1 Data collection 11
  • 4. Key findings 11
    • 4.1 Circles of Support 11
      • 4.1.1 Aims of CoS. 12
      • 4.1.2 The target population for CoS. 12
      • 4.1.3 Key components of a CoS. 13
      • 4.1.4 How providers support the formation of a CoS. 14
      • 4.1.5 Time required to set-up a CoS. 14
      • 4.1.6 Costs for CoS 14
      • 4.1.7 How CoS providers function and who runs them. 15
    • 4.2 Microboards 15
      • 4.2.1 Aim of Microboards 16
      • 4.2.2 Target population of Microboards 16
      • 4.2.3 Key components of Microboards 17
      • 4.2.4 How providers support the formation of Microboards. 17
      • 4.2.5 Legal responsibilities 18
      • 4.2.6 Time required to set up Microboards. 18
      • 4.2.7 Costs for Microboards. 19
      • 4.2.8 Hiring employees. 19

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• 4.2.9 How Microboard providers function and who runs them. 20
• 4.3 Findings relevant to both Circles of Support and Microboards 20
  • 4.3.1 How CoSAM ensure they provide supported decision-making 21
  • 4.3.2 Challenge to provide supported decision-making 23
  • 4.3.3 Working with third parties. 24
  • 4.3.4 Facilitation for CoSAM. 24
• 1. Initiating the Process 25
  • 1.1.1 Cost of facilitators 27
  • 1.1.2 Safeguarding provided by CoSAM. 27
  • 1.1.3 Sustainability. 28
  • 1.1.4 Considerations for CALD and Aboriginal and Torres Strait Islander people 29
  • 1.1.5 Challenges experienced by CoSAM providers. 30
• 2. Microboards versus Circles of support 32
• 3. Outcomes for Circles of support and Microboards 33
  • 3.1 Benefits of Circles of Support 33
    • Supported decision-making. 33
    • Oversight. 34
    • Support and respect. 34
  • 3.2 Quantitative data 35
  • 3.3 Risks of Circles of Support 38
    • Substituted decision-making and who is responsible. 38
    • PwD may not want a CoS. 38
    • Lack of commitment from members of CoS 38
  • 3.4 Benefits of Microboards 39
    • Supported decision-making 39
    • Benefit people of all ages 39
    • Additional support 39
    • Safeguarding 40
  • 3.5 Risks of Microboards 40
    • Substituted decision-making 40

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• PwD not wanting a Microboard or able to choose members 41
• Members exploit their position 41
• Legal ambiguity 41
• 3.6 Quantitative findings on Microboards 41
• 4. Barriers and enablers to setting up and maintaining Circles of support and Microboards. 43
  • 4.1 Barriers for Circles of Support 43
  • 4.2 Enablers for Circles of Support 44
  • 4.3 Barriers for Microboards 44
  • 4.4 Enablers for Microboards 44
• 5. Summary of key findings 45
  • 5.1.1 Funding considerations 46
  • 5.1.2 Establishing a CoSAM 51
  • 5.1.3 Implementing CoSAM 53
• 6. Limitations of this evidence 58
• 7. Strength of evidence 58
• 8. Research gaps 59
• 9. Next steps 59
• 10. Appendix 61
• 11. References 95
• National Disability Insurance Agency 97

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Disclaimer

The NDIA accepts no responsibility for the accuracy or completeness of any material contained in this report. Further, the National Disability Insurance Agency disclaims all liability to any person in respect of anything, and of the consequences of anything, done or not done by any such person in reliance, whether wholly or partly, upon any information presented in this report.

Views and recommendations of third parties in this report, do not necessarily reflect the views of the NDIA, or indicate a commitment to a particular course of action. However, this report may inform the implementation of home and living policies in the National Disability Insurance Scheme (NDIS).

Acknowledgements

The NDIA acknowledge the Traditional Owners and Custodians throughout Australia and their continuing connection to the many lands, seas, and communities. The NDIA pay respect to Elders past and present and extends this to any Aboriginal and Torres Strait Islander people who may be reading this Report.

Suggested Citation

National Disability Insurance Agency 2024. An Evidence Snapshot of Circles of Support and Microboards. Prepared by Evidence and Practice Leadership Branch.

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Abbreviations

Glossary

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1. Executive Summary

This report provides an in-depth exploration of Circles of Support (CoS) and Microboards (CoSAM) that aim to provide supported decision-making, promote social inclusion and safeguarding to people with disabilities (PwD). Generally the goals of the CoSAM are aspirational, such as empowering the individual to have control over their life and to maximise their independence. Members include a committed group of trusted and known individuals such as family members, friends, peers, mentors, and professionals.

Microboards are similar to a Circle except they become a small, non-profit organisation that is governed by members who become a board of directors. Microboards may also take on the responsibility of employing support workers for the PwD, purchasing property and opening bank accounts.

Key Findings:

• Benefits: CoSAM facilitate supported-decision making, socialisation, advocacy, and personalised support, enhancing quality of life for PwD. They provide safeguards against abuse, promote self-determination, and offer continuity of support beyond family involvement.
• Risks: Challenges for CoSAM may include unintended impacts such as: unactioned ideas or activities, financial abuse, substituted decision-making, lack of consent to establish a CoSAM by PwD, employee complaints, and unclear legal responsibilities for Microboard members.
• Barriers: time commitment, NDIS funding, finding committed members, administrative complexities, funding to establish and maintain CoSAM and ambiguities regarding legal responsibilities.
• Enablers: effective facilitation, a person-centred approach and collaborative efforts among members.
• Future Directions: Continued research and evaluation, including well-designed evaluation studies with validated measures, cost-effectiveness analysis, and long-term data (>2 years), are needed.
• Limitations: Findings are constrained by low quality quantitative evidence, lack of long-term data, potential reporting bias from providers, small sample sizes, and little consideration of First Nations people and people with CALD backgrounds.

NDIS Policy and Review:

The NDIS policy on supported decision-making, recognises that “all participants, including people with profound intellectual and multiple disability, have the right to support to make or direct decisions that impact their lives”. And that “decision making support may come from a person, or several people, in formal or informal ways that include: Microboards; Circles of support; Network Facilitators; Decision Coaches”. The NDIS review (2023) recommends the “National Disability Insurance Agency should include an assessment of participants’ need for independent decision-making support as part of budget setting and ensure participants can use their NDIS budgets to access independent decision-making supports”.

Challenges and Considerations:

Providers who assist with the establishment of CoSAM emphasise that CoSAM go beyond supported decision-making strategies; they offer a multitude of benefits, including enabling PwD to lead enriched lives, facilitate meaningful employment, maximise their independence, providing safeguarding and advocacy, establish crucial social connections and assist with succession planning for when family supporters age and die. Providers believe these outcomes are often unachievable without the structured, committed support of a trusted group dedicated to assisting and empowering the PwD. Whilst this finding is supported by interviews from PwD and their carers, there are no studies that compare outcomes in people who have a CoSAM compared with normal care with support from a support coordinator.

Establishing a CoSAM is not without risks. Providers and the NDIA need to ensure CoSAM do not provide substituted decision-making or Microboards misuse NDIS funds when paying for support-workers, tax advice and insurance. While paid external facilitators can help provide oversight, they typically work with a CoSAM for only 1-3 years, thus it is unclear who will take on this responsibility thereafter.

Funding for CoSAM supports could be deemed reasonable and necessary for persons with intellectual disability, cognitive disability, communication issues or complex needs. The choice between a CoS or Microboard is generally made with the PwD, their family or carer in conjunction with a provider who can explain the pros and cons of each. Providers are not registered by the NDIA, so The NDIS Quality and Safeguards Commission may need to consider whether to amend this to address the inequity of access for these supports for people with an Agency- funded budget.

Funding for CoSAM is generally needed for 1 to 3 years, depending on whether the PwD has existing supports and for Circle members, their confidence to function

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independently of a paid facilitator. Funding covers the cost of facilitators who help establish CoS (average $3,800) and Microboards ($8,400 per year), and facilitate meetings for CoS, for approximately 1 to 3 years ($4,000 to $10,000 per year). These pricing arrangements would need to be considered by the Pricing Reference Group.

Providers are not registered by the NDIA, so The NDIS Quality and Safeguards Commission may need to consider whether to amend this to address the inequity of access for CoSAM for people with an Agency-funded budget. Registering the providers will also add more oversight to the industry, since they will be subject to quality-standard audits.

The NDIA’s policy position may be best decided with the support of an advisory panel who can deliberate on the evidence to produce evidence-based advice and recommendations. This will create a structured and transparent decision-making process, building trust and credibility in the decisions and recommendations, especially where uncertainty exists.

2. Background and NDIS context

Supported decision-making is the concept that individuals with mental or intellectual disabilities should have the ability to make decisions about their own lives with the assistance of a supportive team. This approach promotes self-determination and independence, contrasting with the guardianship model, where decisions are made on behalf of the person [2].

According to the Australian Law Reform Commission (ALRC), “all persons who require support in decision-making must be provided with access to the support necessary for them to make, communicate and participate in decisions that affect their lives” [3]. The Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (The Commission) has built on the ALRC’s findings, underscoring the importance of supported decision-making to ensure that people with disabilities can make decisions for themselves with dignity and autonomy [4].

From the NDIS perspective, the NDIS Act and NDIS Supported Decision-Making Policy (2023) stipulates that “NDIS funding for supports such as network facilitation and Microboards may be available if it is reasonable and necessary” [5]. Furthermore, the NDIS Review (2023) proposed that “participants should be allowed

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to use their NDIS budgets to establish decision-making support networks (such as circles of support)” (Action 5.3) [6].

Circles of Support and Microboards (CoSAM) are designed to provide supported decision-making to people with disability, to help them have live an enriched and fulfilled life that includes social activities, choice and control over their decisions, maximise their independence, good quality supports and fulfilling employment. CoSAM typically consist of trusted and known family members, friends, peers, mentors, and professionals.

CoSAM are used by people who have intellectual disabilities, cognitive disabilities, communication issues or complex needs. These individuals can benefit greatly from the additional support since many are socially isolated with few others involved in their lives [7]. Providers of CoSAM will help identify potential members and may help build new relationships if needed for those who do not have a strong social network.

Their social networks are small and dense, often comprised only of family members, peers with intellectual disabilities and paid staff. Yet people with intellectual disabilities report that neither families nor service providers understand the significance of informal relationships and fail to provide the practical support necessary to form and maintain such relationships. Various formal strategies to build and maintain informal social networks for people with intellectual disabilities are reported in the academic and grey literature.

In August 2023, a review submitted to the NDIS review committee by members of the CoSAM Community of Practice in Australia, that includes Inclusion Melbourne, Deakin University and Microboards Australia, described how CoSAM are funded, are beneficial , can measure progress; can help access supports and provide safeguarding [8]. Recommendations from the review focused on the need for NDIS guidance on CoSAM; to set up a CoSAM advisory group; to acknowledge the benefits of CoSAM and to fund them.

In 2024, the NDIA has received several requests for funding of CoSAM and is currently developing policy and operational guidance for front line decision-making. This evidence summary was undertaken to provide an updated review of the available evidence (both research and practice -based) to help inform the NDIA’s position on who they are best suited for, how they’re implemented, their benefits, risks, barriers and enablers.

3. What we did

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This evidence summary addressed the following questions on CoS and Microboards:

1. What is the current state of evidence for CoS and Microboards for supported decision-making?
2. What are the benefits and risks associated with these strategies for people with disability, their family and/or carers?
3. What design features and implementation factors should be considered when setting up and/or maintaining CoS and Microboards?
4. What are the enablers and barriers to setting up and ongoing implementation of CoS and Microboards?
5. How can CoSAM providers build community connections and informal supports for people who are isolated or have minimal existing supports?

This is the first phase of work, being led by the Research and Evaluation Branch, to help inform the NDIA’s position on funding CoSAM.

3.1 Data collection

We conducted a grey literature search using Google and Google Scholar. We also undertook a search of ERIC, PRO-QUEST, Trove and Analysis Policy Observatory.

The peer reviewed literature search included primary research and systematic reviews. PsycINFO, Medline, CINAHL and EMBASE databases were searched..

One reviewer (LS) conducted semi-structured interviews with seven representatives of CoSAM providers in Australia and Canada via on-line video conferencing software, including: Belonging Matters, Life Assist, Imagine More, Community Living Project, Microboard Australia, Vella Microboards Canada and Microboards Canada.

A meeting with NDIS trainee planners was also conducted to explore how they would consider a request for CoSAM funding.

4. Key findings

We screened 551 academic literature records and 10 met the eligibility criteria. An additional 14 reports were identified from the grey-literature that included government reports, organisation reports and theses (Supplementary Material S1).

4.1 Circles of Support

This section of the evidence summary compares the key features of four Australian providers that support the creation of Circles of Support (CoS):

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Belonging Matters, Life Assist, Imagine More, and Community Living Project. Information was gathered from the providers’ websites, published reports, and interviews with representatives from Belonging Matters, Inclusion Melbourne, Imagine More, and Community Living Project.

4.1.1 Aims of CoS.

The aims of CoS are to:

1. Empower the PwD to live a fulfilling life: enable PwD to have the same opportunities in life as other people in the community, and to ensure their lives are fulfilling, unique, socially inclusive, and empowering
2. Provide structure to existing supports: enable existing informal supports to help the individual and their family achieve their goals by providing structure and formal processes.
3. Long-term support: to co-design a succession plan for when family are no longer able to and to provide a sustainable network of support over the individual’s life time
4. Help PwD form deeper relationships: to help the PwD expand their contacts, associations and connections.
5. Provide opportunities for social activities: CoS can help provide social supports and social opportunities for the PwD.

Interviews with providers revealed that the goals of CoS should be aspirational, helping individuals with disabilities envision what is possible in their lives (Belonging Matters, Imagine More). The purpose of a CoS is not to default to ‘easy’ options like segregated employment or group home living, but to assist individuals in achieving a full, meaningful, and inclusive life. This includes securing open-market employment, pursuing interests and hobbies, or living independently (Belonging Matters). For example, if a PwD prefers to stay in segregated employment because their friends are there, the CoS should help them understand their options and explore what fulfilling employment could look like (Belonging Matters).

“People with intellectual disability are so vulnerable to services and the impact of systems just taking over their life and saying, you know what this would be so much easier if you went to a day program and you lived in a group home. You know? So really the circle with a mechanism to safeguard people’s vision but also bring other people into their life” (Director, Belonging Matters).

4.1.2 The target population for CoS.

CoS are designed to assist people with disabilities, particularly those with intellectual disabilities and autism. Some providers, like Life Assist, have eligibility criteria for

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setting up a CoS, working only with individuals who already have existing networks. Others, such as Belonging Matters and Imagine More, believe that everyone has a network that can be discovered and engaged with time and effort. For individuals without a network, facilitators at the Community Living Project enlist other support workers to help establish one.

Inclusion Melbourne expresses concerns about excluding those without existing networks “it means that those [who] are less privileged … are more disenfranchised, would struggle” (Head of Policy, Research, and Advocacy, Inclusion Melbourne).

Most PwD who are creating a CoS will need some level of assistance with their decision-making. However, providers like Belonging Matters and Imagine More do not assess this need or use it as an eligibility criterion. Belonging Matters requires that PwD have “a vision for a good life. They need to want it. If they don’t want that, then there are a million other providers that can help them with segregated care, so we just leave that to other providers to do” (Facilitator, Belonging Matters).

CoS are also crucial for individuals whose parents are elderly and may soon pass away, as they ensure continuity of care and support, “You know that there are a group of people around the person who are unpaid to safeguard them when families are no longer here” (Facilitator, Belonging Matters).

CoS are promoted for young people, especially when they’re attending school. CoS may involve recruiting school friends to join, potentially holding meetings at school to facilitate support during school hours and provide opportunities for social activities for the PwD.

4.1.3 Key components of a CoS.

• Circles of Support include members familiar with the PwD, such as family, school friends, neighbours, and service providers.
• The PwD actively participates in selecting CoS members.
• Meetings are held regularly, typically every six weeks, often at the PwD’s home.
• Facilitators are crucial for CoS success:
• They ensure the PwD’s goals are aspirational.
• They involve the PwD in decision-making.
• They encourage active participation from members inside and outside of meetings.
• Facilitators should not be family members to maintain neutrality.
• The PwD may need time to feel comfortable in meetings.
• CoS collaboratively works toward common goals for the PwD.

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• Membership in CoS is initiated and meetings are planned by the members themselves.

4.1.4 How providers support the formation of a CoS.

Some providers spend several months working closely with families and PwD before inviting members to join a CoS. They assess the PwD’s needs and social network to determine if a CoS is appropriate (United Care Queensland, Belonging Matters). Not everyone may find CoS suitable; some PwD may prefer individual mentoring or joining peer support groups (Belonging Matters). Once a decision is made to establish a CoS, providers evaluate the existing network and assist in inviting members. Belonging Matters suggests interested parties submit an expression of interest and involve the PwD when selecting members to join.

4.1.5 Time required to set-up a CoS.

The time and effort needed to establish a CoS vary depending on whether the individual has an established support network (Belonging Matters, Inclusion Melbourne, Life Assist).

On average, facilitators invest 15 hours (10 to 20 hours) to set up the CoS, then 4 to 8 hours per meeting (usually every 6 to 8 weeks) for the first 3 years (Inclusion Melbourne). Meeting times include preparation time and follow-up tasks. After 3 years, paid facilitation hours are reduced with the goal of having CoS running independently.

Imagine More do not limit their time since they provide free advice and support (but do not provide facilitation). Belonging Matters describes the need to consult with families and the PwD over several months before invites to join the CoS are sent out.

Inclusion Melbourne believes it may take a year before a circle may achieve anything significant, so outcomes shouldn’t be assessed until then: “the first year is about forming those natural consolidating national networks. Second year is about a lot of the goal setting and connection and trying new things. It’s not fair to lean on a circle in the first couple of years…. but by year three it’s quite fair for a funder to lean on that circle for outcomes and outputs” (Head of policy and research, Inclusion Melbourne).

4.1.6 Costs for CoS

The cost of establishing a CoS depends on the hours worked by the facilitator (Life Assist, Community Living Project). Generally, a facilitator provides 3 hours of work a week, so over the year it costs $10,000 for a facilitator. PwD may receive funds to

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set up a CoS through their NDIS plan, and families may receive financial support from the redacted: s22(1)(a)(ii) - irrelevant.

For a provider, the money received to pay for a facilitator covers approximately two thirds of their running costs. The other third needs to be found elsewhere, such as grants (Community Living Project).

Imagine More provides free advise and support for setting up a CoS, excluding facilitation. They receive Independent Living Centre (ILC) funding from the Federal Government to sustain their staff and operations, with further funding expected to commence in August (pending confirmation).

4.1.7 How CoS providers function and who runs them.

The not-for-profit CoSAM providers typically operate with 1-9 staff members who specialise in developing CoS, have expertise in the disability sector, person-centred planning, and group facilitation. Imagine More has staff with lived experience but does not employ dedicated facilitators. Some providers, like Belonging Matters, contract facilitators who they check in with regularly for updates and to provide oversight. Belonging Matters currently oversees 13 CoS, having managed them for a decade, while Inclusion Melbourne established 9 CoS in two years and Imagine More has assisted setting up 50 CoS.

These providers often rely on Informational Linkages and Capacity Building (ILC) funding from the Federal Government to execute community projects benefiting Australians with disabilities, their carers, and families. This funding is used to cover the costs of training and consulting with families, it does not pay for the facilitators time to set up and run CoS.

4.2 Microboards

A Microboard functions similarly to a traditional Circle of Support, involving a trusted group of individuals who help advocate for and realise a person’s goals and wishes. However, unlike a Circle of Support, a Microboard is a formalised and legally recognised organisation. Shea (2001) describes it as “a non-profit society of family and friends, committed to knowing a person, supporting that person, and having a volunteer (unpaid), reciprocal relationship with that person” [9]. Microboards are a supported decision-making structure that “legally recognises the process of supporting a person with their decision making. That is, it is an alternative legal regime to substituted decision making and a system intended to replace guardianship” [10].

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4.2.1 Aim of Microboards

Microboards are small nonprofit providers established by a dedicated group of family members, friends, and community members. They aim to provide personalised support and advocacy for people with disabilities (PwD), focusing on their specific needs and goals. “It’s a group of people who are in a freely given reciprocal relationship with a person with disability….who make a commitment to in a number of principles, but the three main ones are person-centred thinking, self-determination and reciprocal relationships” (CEO Microboards Australia).

The primary objectives of Microboards include:

1. Individualised support: finding services and support to meet the specific needs, preferences, and aspirations of the PwD.
2. Hire support staff they choose: the MB can employ support staff for the PwD. Within the NDIS context, the Microboard hires support staff using a self-managed or plan-managed fund and invoice the participant for their supports.
3. Empowerment and inclusion: empowering the PwD to live more independently and to have an inclusive life within their community.
4. Advocacy: acting as advocates for the individual’s rights and needs, ensuring they have access to necessary resources and opportunities.
5. Quality of life: enhancing the overall quality of life for the individual by providing consistent, reliable support from a committed group of people who know them well.
6. Self-determination: promoting self-determination and enabling the individual to have a greater say in their life decisions and the direction of their care and support.
7. Sustainability: creating a sustainable network of support that can adapt to the changing needs of the individual over time (e.g., when the carers are no longer able to help).
8. Social activities: create opportunities for the PwD to engage in the wider community and to do fun activities with Microboard members.

4.2.2 Target population of Microboards

People suitable for a Microboard include those with intellectual or learning disabilities, physical disabilities, complex conditions like sensory impairments, and specific conditions such as dementia. Lack of an existing support network is not a barrier to starting a Microboard. Providers assist by identifying close relationships in the person’s life or expanding social connections through community engagement activities or facilitating the development of meaningful relationships.

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4.2.3 Key components of Microboards

Microboards in Australia are often established using the parameters outlined by Vela Microboards Canada. These include:

1. Members must establish and maintain a personal relationship with the person for whom the board is created.
2. All people are assumed to have the capacity for self-determination.
3. All decisions made by a Microboard will respect the person’s safety and dignity, and reflect their needs and wishes.
4. Members must ensure the person participates in community events with themselves or others in their network.
5. All Microboard members will conduct their board business in the spirit of mutual respect, cooperation, and collaboration.
6. Members are there on a voluntary basis, and its understood that people may choose to leave or take a break.
7. A Microboard is structured in a way that it can remain in place forever.
8. A Microboard is a supported-decision-making structure for people who need support to make a decision, but not everyone does.
9. A Microboard may employ support workers for the PwD.
10. A facilitator will work with the Microboard initially to ensure they focus on the PwD’s needs and goals, but ultimately move to a model where the Microboard functions independently of the facilitator.

4.2.4 How providers support the formation of Microboards.

Providers of CoSAM provide a range of services to help families of a PwD establish and maintain Microboards. These services typically include:

1. Information and education: conduct workshops and training sessions to educate families and community members about the concept of Microboards, their benefits, and how they operate.
2. Facilitation and consultation: offer the services of experienced facilitators who guide the meetings and planning sessions, helping to form the Microboard.
3. Consultation services: provide ongoing consultation to address questions and challenges that arise during the setup and operation of the Microboard.
4. Legal and administrative support: help with the legal process of incorporating the Microboard as a nonprofit provider.
5. Compliance guidance: ensure that the Microboard complies with local, state, and federal regulations.
6. Person-centred planning: facilitate the development of a person-centered plan that outlines the individual’s needs, goals, and preferences, which will guide the Microboards activities.

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7. Support network building: help identify and recruit family members, friends, and community members who can contribute to the Microboard.
8. Policy advocacy: advocate for policies and systems that support the establishment and sustainability of Microboards.
9. Networking opportunities: facilitate connections between different Microboards to share experiences, resources, and best practices.
10. Evaluation tools: provide tools and frameworks for evaluating the effectiveness of the Microboard and the well-being of the individual it supports.

4.2.5 Legal responsibilities

The following describes who might generally bear legal responsibility:

1. The Microboard as an entity: if the Microboard is formally incorporated, it operates as a legal entity. This means the Microboard itself can be legally responsible for decisions and actions taken in its name.
2. Board members: individual members of the Microboards board of directors have a fiduciary duty to act in the best interests of the PwD. They can be held legally responsible for decisions made by the board, especially if those decisions result in harm or are found to be negligent.
3. The PwD: the PwD is also a board member and bears some responsibility for board decisions. However, their legal responsibility may be limited by their capacity to understand and make informed decisions, and this is often taken into account in legal considerations.
4. Third parties: when working with third parties, the Microboard as a whole is typically legally responsible for agreements and decisions
5. Ethical responsibility: members of the Microboard (and CoS) bear ethical responsibility for ensuring decisions align with the PwD’s best interests. This ethical responsibility does not always equate to legal liability.

4.2.6 Time required to set up Microboards.

Setting up a Microboard typically spans several months to two years, including consultations with families to determine suitability, preparation of necessary documents, exploration of potential members, provision of member training, and selection of a facilitator. The process of choosing members for the Microboard can be a lengthy process, often employing relationship mapping techniques to categorise individuals in the person’s life who “care about the person, know the person and either understand or are able to engage in a process of understanding the principles which underpin Microboards” (CEO, Microboards Australia). Often families will think they need professionals on the board, such as lawyers and doctors, but “part of our role is to help them to understand that you can outsource all of that support” (CEO,

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Microboards Australia). For individuals lacking a robust support network, time is allotted to cultivate new relationships that may lead to potential board invitations.

4.2.7 Costs for Microboards.

Microboards Australia estimates an annual operational cost of $8,400, covering 84 hours of facilitator time and delivery of workshops to train new members on how to run Microboards and supported decision-making ($100 per hour). Facilitators help establish the Microboard (approximately 2 years) and may attend a few meetings, but they mostly run independent of facilitators.

Ongoing training and education provided by Microboards Australia is estimated to cost $3,800 per year.

Setting up a Microboard in British Columbia only costs $130 for non-profit incorporation and $40 annually thereafter. Vella Microboards provide free mentoring, including training and ongoing advice to Microboard members. Vella is funded by Community Living British Columba (CLBC), that allows them to provide free services to families: “if those 750 people didn’t have a free resource in Vella, then there definitely would be more cost associated with them trying to figure out how to move forward and how to set things up and how to proceed” (Executive Vella Microboards).

4.2.8 Hiring employees.

Microboards can hire support staff who assist in the home for PwD. In British Columbia the majority of Microboards take on this responsibility. However, in Australia, only 4 of the 20 Microboards do this. In such cases, the Microboard will pay the salary of the support worker and invoice the PwD who then claims this money from the NDIS and repays the Microboard. For this to happen the PwD needs to manage their own funds. Microboards Australia emphasises that “this has since proven to be a reliable and robust way of engaging support teams and providing individualised supports which are not solely dependent on the parent of person with disability, and have the added transparency and accountability of oversight by a responsible board” (CEO, Microboards Australia). For the remaining PwD who have a Microboard, but do not employ staff, the carer will take on the task of hiring support workers.

Part of the role of Microboards Australia is to advise members of Microboards who wish to hire support staff, by providing “substantial support around legal engagement and management of paid support workers” (CEO, Microboards Australia).

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Some Microboards may face a barrier in needing to pay for insurance to protect themselves in cases of workplace injuries or breakdowns in employee relationships “you never want to have a legal entity in place without insurance…. it provides that safety net for families, for the person, right, especially in situations where there’s a breakdown in the employee relationship, or there’s some sort of injury in the workplace” (Board member and lawyer, Microboard Ontario).

Having a Microboard and insurance can help families mitigate risk effectively: “If the family’s been managing four or five workers for 20 years and they’ve had funds flowing through their accounts and they’ve had no insurance and no employment agreements or contracts ….this is just a way to make things easier….and to set up proper controls, proper operating environment” (Board member and lawyer, Microboard Ontario).

The cost of insurance for a Microboard in Australia can vary widely depending on factors such as the size of the Microboard, the activities it undertakes, and the specific insurance coverage required. Typically, insurance costs for nonprofit providers like Microboards can range from a few hundred to several thousand dollars per year. “So there is this myth that it’s hard and it’s more expensive, but I do think it’s a bit of a myth” (Board member and lawyer, Microboard Ontario).

4.2.9 How Microboard providers function and who runs them.

In Australia, Microboards Australia employs 20 team members, including 8 full-time staff and 12 facilitators, and has received ILC funding for the past 4 years. This funding supports their activities in establishing Microboards, training members, and pairing individuals with one of their 12 facilitators. Once a Microboard is established, Microboards Australia steps back and offers support as needed, such as legal engagement and management of paid support workers. Currently, there are 20 Microboards in Australia.

In Canada, Vella Microboards receives government funding from Community Living British Columbia, enabling them to provide services at no cost to people with disabilities and their families. They currently support 750 individuals and in the last year signed up 70 new Microboards, but lack the capacity to oversee every Microboard closely: “it’s not like we have the capacity to chase people down and make sure they’re actually doing things properly” (Executive, Vella Microboards).

4.3 Findings relevant to both Circles of Support and Microboards

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4.3.1 How CoSAM ensure they provide supported decision-making

There is a history of people with disabilities not being supported or enabled to make decisions for themselves. This is based on the idea that because a person can not communicate, that the person doesn’t know how to or want to make decisions. Because of this, people with cognitive impairment are often left out of decisions about their lives and rely on other people to make decisions for them, known as substituted decision-making. These decisions are generally made in the person’s perceived ‘best interest’, however, this does not necessarily mean their will and preference has been considered.

Microboards and Circles of Support ensure they provide supported decision-making rather than substituted decision-making through various practices and structures that prioritise the preferences of the individual they support. This includes:

1. Person-centred planning: centre all planning and decision-making processes around the individual’s needs, preferences, and goals.
2. Active participation: involve the individual in all discussions and decisions to the greatest extent possible, ensuring their voice is heard and respected. The individual is encouraged to attend the meetings and are a member of the CoSAM.
3. Trusted relationships: a CoSAM is composed of family members, friends, and community members who know the individual well and have their best interests at heart.
4. Role clarity: clearly define the roles of each member to ensure they are there to support, not override, the individual’s decisions.
5. Effective communication: use communication methods that are accessible and understandable to the individual, including plain language, visual aids, or assistive technologies if needed.
6. Patience and time: allow the individual time to express their thoughts and make decisions, without rushing the process. Individuals may decide sometime after the meeting when the facilitator gets back in touch.
7. Risk and responsibility: respect the individual’s right to take risks and make mistakes, recognising that this is a normal part of learning and personal growth. Encourage them to make their own choices and take control of their life decisions, even if those decisions differ from what others might choose.
8. Facilitated decision-making: When necessary, facilitate decision-making by breaking down complex decisions into smaller, more manageable steps and providing support at each stage.
9. Ongoing assessment: regularly review and adapt the support provided to ensure it continues to align with the individual’s evolving needs and preferences.

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By implementing these practices, CoSAM can create an environment where the individual is empowered to make their own decisions with the necessary support, rather than having decisions made for them.

“That in many ways because of how a circle is set up, it actually embodies so much of supported decision-making in its structure. It’s almost like it’s got a bit of an idiot proof thing to it because the fact that you have the regularity, the people, the checks and balances, the structured meeting, the agenda that you have, the goals, [and] that you’ve gotta work towards the external accountability…..So even if you’ve got people who have got no understanding [about] support theory,….as long as the structure of the circle functions well, you’ve got the regularity, the checks, the goals and the Facilitator teaching training [there is] a chance for them to catch up with others. And you already have that machine happening of supported decision-making” (head of research and policy, Inclusion Melbourne).

Interviews with representatives from CoSAM providers in Australia and Canada revealed that the approach to supported decision-making varies depending on the individual’s ability to communicate. “Someone might need to make a decision using pictures, they may need to make a decision [by] going and visiting something” (Director, Belonging Matters), but maintained it is possible “…regardless of, you know, the impact of the disability, I think there’s always a way and it’s just doing that deeper thinking to make sure that the person is involved” (Director, Imagine More)

Supported decision-making training for facilitators provided by Inclusion Melbourne integrates several models, focusing on:

• Recognising a person’s past experiences and options, and reinforcing these.
• Identifying decisions that need to be made or could be made.
• Emphasising the importance of making decisions now to achieve long-term goals.
• Expanding the range of choices and experiences available to the person.
• Engaging the insights of supporters, family members, etc., to discern the person’s will and preferences.
• Considering potential consequences of decisions.
• Empowering the person to make decisions independently or with support.
• Reviewing and learning from decisions made.

Other strategies employed by CoSAM to facilitate supported decision-making include:

• Encouraging the PwD to write a manifesto outlining how the CoSAM can support them in decision-making.

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• Actively involving the PwD in attending meetings.
• The PwD collaborating with the facilitator to set the agenda for meetings.

A successful outcome for CoSAM, as highlighted by Belonging Matters, is a shift in the PwD’s decision-making capability to articulate their genuine preferences. PwDs often respond saying “yes” to all suggestions, but when they start to say

Belonging Matters recognises the ongoing challenge of avoiding substituted decision-making within CoS, acknowledging,

A facilitator (i.e., generally staff who work for a COSAM provider), plays a crucial role in the establishment of CoSAM and facilitating meetings for CoS but not Microboards, since they function independently soon after they’re established. The key responsibilities of a facilitator are summarised in Table 1.

Table 1. The key responsibilities of a facilitator.

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| 7. Advocacy and Support
Advocate for the individual’s needs and rights, both within the CoSAM and in broader contexts | ✓ | ✓ | | 8. Monitoring and Evaluation
Monitor the implementation of the person-centred plan and track progress towards achieving the individual’s goals. | ✓ | | | 9. Sustainability Planning
Help the CoSAM plan for long-term sustainability, including succession planning and for Microboards financial management. | ✓ | ✓ | | 10. Empowerment and Independence
Encourage and support the PwD to take an active role in decision-making and self-advocacy. | ✓ | ✓ |

The facilitator plays a key role in educating COSAM members and family, about what is possible for the PwD. “….it can come up in a Circle, maybe even by people who love, you know, their son or daughter by just simply saying, I don’t think that they can do that. That’s not possible. So, it’s that that [we’re] constantly trying to chip away at [and] lift the bar” (Director, Belonging Matters).

Facilitators generally attend Circle meetings for 1 to 3 years with meetings every 6 to 8 weeks. Having a well-trained, paid facilitator increases the Circles chances of success “without good facilitation and without good direction and a strong value base behind that, they would fall apart very quickly” (Facilitator, Belonging Matters).

Conversely, a facilitator works to set up the Microboard over 2 years and may attend a few meetings but they generally become independent as soon as they are established. Microboards Australia see themselves as a “capacity building providers, so it’s a little bit different to a Circle’s model. They need that intensive work at the start [to establish a Microboard], which might be two or three years, but then they tend to run independently, but they do need intermittent support at times across their journey.” (Microboard Australia).

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One of the critical skills of a good facilitator, is understanding and knowing how to make use of the services, tools and opportunities provided within the NDIS, communities, service providers and government. The head of policy and research at Inclusion Melbourne states “having that ability to use these tools and systems and planning, that then becomes the next real driver”.

When the CoS is ready to become independent of a paid external facilitator, a member will step into the role. Ideally, this not a family member so they can participate in the discussions and avoid the challenging task of requesting help from other members (Imagine More and Belonging Matters).

Most providers highlighted the difficulty of finding good facilitators due to the complexity of the role and the need to work flexibility outside of office hours.

1.1.1 Cost of facilitators

When CoSAM providers discuss ‘funding Circles and Microboards’, they primarily focus on funding the facilitators. It costs approximately $10,000 a year for a CoS facilitator and $8,400 a year for a Microboard facilitator and for training board members. These costs will vary depending on the provider and level of need of the PwD to establish a CoSAM.

1.1.2 Safeguarding provided by CoSAM.

Circles and Microboards play a crucial role in safeguarding by ensuring that services provided are supportive and safe for individuals, keeping their needs at the forefront of planning, establishing succession plans, fostering community connections, and acting as a natural safeguarding mechanism by consistently bringing people together around a PwD. According to Jay (2018),

An important goal of the CoSAM is to continue across the individual’s lifetime, to ensure they receive ongoing support and care even when the family are no longer alive. While CoSAM inherently act as a safeguarding strategy, Microboard Australia CEO emphasises the importance of the PwD selecting their Microboard members willingly,

society) and how to promote sustainability. Other topics may include establishing a CoSAM, the role of the facilitator, planning the first gathering, creating a positive culture, letting a Circle grow naturally, how to make it fun and to do things outside the circle (Inclusion Melbourne, Imagine More). Inclusion Melbourne offers 6-hour training for facilitators.

Holding the CoSAM accountable can be an effective strategy to ensure their sustainability. Belonging Matters requires the CoS to establish a plan at the commencement of each year based on what the PwD would like to achieve, and then review progress against the plan. It is important the CoSAM work towards a specific goal to give the CoSAM a sense of purpose (Imagine Melbourne).

Sometimes members of a Circle may only participate for the duration it takes for the PwD to achieve a particular goal, i.e., fulltime employment (Imagine More, Belonging Matters), or for the time the PwD is at school (Imagine More). Thus, the selection of Circle members may depend on the goal of the PwD at the time (i.e., school friends to include PwD in social activities). Inclusion Melbourne provides some guidance on how members may withdraw from the Circle.

1.1.4 Considerations for CALD and Aboriginal and Torres Strait Islander people

Belonging Matters is one provider that describes the demographic of the circles of support they have created. The majority are described as non-CALD families. Of the 16 of Circles established with Belonging Matters since 2015, ten are non-indigenous Australians, two have Jewish backgrounds, one Polish, one New Zealand, one British, and one Italian. The two people from Jewish backgrounds have strong cultural and religious roots and values, providing some evidence that the CoS can work for people from CALD backgrounds.

Imagine More claimed they not any need to adjust their approach for setting up a CoS for cultural reasons but the CEO commented they are sensitive to the needs of people with CALD backgrounds “but we would be, you know, aware of that and… what sort of considerations that they would want and what would be important”.

The concept of establishing a formal network, such as a CoSAM, to support a PwD may seem unfamiliar to First Nations people (CEO, Microboard Australia). They may already have a healthy, inclusive, community culture that provides a support network for the PwD and their family “We see it very much as our community is a collective community. Supported decision-making for a person that has a disability or doesn’t have a disability is often the same. It’s always a group consensus about what can and can’t be done particularly in more rural, regional and remote communities.. And

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literally we do sit and decide who is going to make the decision and who needs to be involved in that decision-making process. And it doesn’t mean that we’re taking away the autonomy of the individual. The individual is still centred but the decision is collectively made about what’s best for that person. And literally it is our way of doing the circle of support whether you have a disability or not…” (First Nations person)[4]

The barriers faced by First Nations peoples was briefly considered in the Commonwealth Department of Social Services commissioned report on supported decision-making. That research made the point that due to the mistrust in the sector, ‘Capacity building must also be sensitive to historical and current factors affecting the relationship between communities and government/services’ [13].

The NSWLRC noted that supported decision-making aligned closely with the: collaborative and communal style of decision-making in First Nations communities, particularly where there are multiple supporters. However, somewhat different from supported decision-making an individual’s decision is often thought of as a decision by and for their whole family or community group [13].

Guidance for providers by the Office of the Public Advocate (VIC), on interacting with First Nations clients may be helpful when exploring supported decision-making in various contexts [14].

1.1.5 Challenges experienced by CoSAM providers.

CoSAM providers in Australia described the challenges they experience when setting up and maintaining a CoSAM for participants. The following paraphrases what providers have claimed in reports and in interviews. They included:

1. Inconsistent decision-making by NDIS planners: inconsistent decisions made by planners about whether to fund facilitators for CoSAM is a source of frustration for providers, families and the PwD. Some planners may approve it, whist others may not. Additionally, it may be funded one year but refused the following year. An email (June 2024) from a Support Coordinator to a facilitator about an individual with an intellectual disability (who has two parents who are intellectually disabled), who had a circle funded for 18 months said, “at this stage she [the planner] confirmed funding for circle meetings is declined until they have explored it further”. The funding was denied because the planner believed a facilitator is a duplication of services provided by support coordinators.

In other instances, it’s because they believe the PwD has friends and doesn’t need a facilitator. This may lead to a breakdown of the CoSAM and impact the

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PwD and their carer’s wellbeing.

2. Funding facilitators using the support coordinators budget: NDIA agreed in 2021 that facilitators could be funded using the line item of Support Co-ordination level 2. However, this led to no Microboards being approved. While CoSAM facilitation may include elements of support coordination, providers claim one is not a stand-in for the other. Currently, there is no line item for a CoSAM facilitator. Requests for funding a CoSAM are currently going via the Technical Advice and Practice Improvement Branch and since January none Microboards have been approved.

The differences between services provided by a CoSAM versus support coordinators are:

• Support coordinators have a greater knowledge and understanding of the NDIS.
• CoSAM support the PwD to choose a service or provider that their support coordinator has found.
• CoSAM advocate with the PwD if they are not being heard by a service.
• CoSAM can explore lifestyle options for the PwD that are outside of the NDIS goals.
• Support coordinator’s role is time limited.
• CoSAM can spend more time exploring what a PwD wants or needs in all aspects of their life.

3. Assuming role of CoSAM is only for supported decision-making: while CoSAM practices supported decision-making, it is inaccurate for NDIS planners to view CoSAM as merely a supported decision-making mechanism. CoSAM offers much more, including safeguarding, advocacy, social activities, community connections, and inclusion, among many other benefits.
4. Do not understand the value for money: there is a lack of understanding regarding the value for money a CoSAM can provide compared with treatments with therapists. For instance, CoSAM can reduce the need for other supports such as occupational therapy, attending day centres.
5. Overreliance on therapeutic solutions: the focus on clinical or therapeutic solutions to help PwD, such as occupational therapy, has diminished the importance social networks or close relationships have in helping a PwD achieve their goals.
6. Lack of guidance for planners: NDIA planners receive little training on the benefits of CoS, despite how they align with NDIS goals “and it it’s very odd because the goals of the NDIA, for example are, [a] good life in community,

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social or economic, all of that. And yet what’s happening in practise on the ground is completely different. And this, you know, cause it filters down through planners. If they haven’t had training” (Director, Belonging Matters). 7. Disability sector’s misconception of what is possible for PwD: many (NDIA planners, families and the disability sector) fail to believe a PwD can contribute socially and economically to society “it’s countercultural at this stage still, because culturally in the disability sector, as babies, you know, people are still being told that what is on offer is segregated options. Planners are telling people they can’t live on their own” (Director, Belonging Matters).
“…what we’re doing is trying to work in a paradigm that isolates, segregates and has such low expectations of people with intellectual disability” (Director, Belonging Matters). 8. Lack of funding for facilitators may compromise access to other supports or CoSAM: PwD will typically pay the facilitator’s fees out of their NDIS capacity building or core supports budget. Some families have had to decide whether to use their limited funds for therapeutic support (i.e. occupational therapy) or a facilitator because they didn’t have enough funds for both. 9. The need to advocate for families who have had CoSAM funding denied: because so many families have CoSAM funding denied by the NDIS, it places additional strain on providers such as Inclusion Melbourne to advocate for them “And I’m pretty good with supporting families to get funds for the circle facilitated. But the average person struggles. Really often it’s not because of the circle that they’ve requested funding for is poorly put together. It’s often because they just struggle to articulate all this complexity” (Head of research and policy, Inclusion Melbourne).

2. Microboards versus Circles of support

A Circle of Support may be a good option when the person has a strong existing support network and there’s no need to progress to a Microboard.

A Microboard may be a good option when the person: 1) does not have a strong network of existing supports, such as family or friends, 2) requires management and oversight for various aspects of their life, 3) needs more structure and reliable checks and balances, 4) needs strong advocacy, 5) wishes to formalise their support for when their parents are no longer alive, 6) has a Circle of Support at risk of falling apart, 7) has parents who no longer want to self-manage NDIS funds and prefers a Microboard acts as a provider to hire support workers and handle fiscal, legal, and practical responsibilities, 8) has people in their life with financial and reporting expertise and 9) has people in their life willing to be part of an incorporated entity.

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3. Outcomes for Circles of support and Microboards

Twenty-seven papers from academic and grey literature reported on the benefits and risks of setting up and maintaining circles of support and Microboards. Most data were qualitative, derived from interviews and focus groups with facilitators, carers, people with disabilities, members of circles of support and Microboards, and service providers.

A limitation of the data is that authors often summarise interview responses without providing full quotes. This practice can make it difficult to understand the context or full meaning of the statements. Additionally, authors may quote other authors’ publications rather than directly quoting interviews, complicating the extraction of original interview data. This approach lacks transparency and reduces the reliability of the reported information. To counter this, quotes from PwD (or carers are highlighted in this chapter. Fortunately, most of the reported benefits are derived from PwD or their carer’s quotes, so there is a reduced chance of positive bias in our findings. However, some researchers and their publications are funded by CoSAM organisations, potentially biasing their results [4, 15-18].

No cost-effectiveness analysis on CoSAM versus usual care was identified in the literature. One study estimated the cost saving CoS may provide people with severe learning difficulties by arranging a care package to be delivered in the home and compared this with the cost of living in fully-staffed residential care (mean £51,000 versus £139,000) [19].

Of the 25 papers, twelve were from Australia (44%), eight from Canada (30%) where the concept of Microboards originated, three from the UK and Ireland (11%), and three from the United States (11%). The most reported benefits and risks found in the literature are shown in bold, and the corresponding references and examples quotes can be found in “Appendix Table A2-A5”.

3.1 Benefits of Circles of Support

Supported decision-making.

Structuring existing relationships into a Circle of Support provides numerous benefits for PwD. It establishes a reliable, coordinated system that regularly meets to find greater opportunities for the PwD to achieve their personal and professional goals. “You know when you get a group of smart people together who’ve got different

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life experience, they are very good at brainstorming…. They clarified issues” (Parent of PwD) [20].

By providing supported decision-making, they empower individuals by giving them choice and control over their lives and the support they receive. A PwD said “good support like I get has helped me to learn. I go to them and I have people to ask questions. Other people’s thoughts and ideas help me decide what to do” [21].

Oversight.

Having several members in a Circle of Support increases oversight, ensuring the PwD receives high-quality services and holding providers to account. The circle can also advocate for the rights and needs of PwD, tasks often left to caregivers who are frequently exhausted and have limited capacity to challenge the system. They can also assist those who have minimal support “[CoS can support the] thousands of people who are living in disability accommodation, who are unable to self-advocate and do not have family support” (Family of PwD) [22].

Support and respect.

A CoS facilitates socialisation and friendships, reducing isolation and improving mental well-being: “Jeff had more people to call on following the program than before” (Mother, circle member) [22]. Another circle member described “[the circle] produced major social, psychological and practical outcomes for the individual and their family” [19]. One member described the Circle’s impact as “massive” for a person with complex needs who now knew that “people are looking out for her. She could now take part in activities in the same way as people without disabilities and was much more integrated in the local community” [19].

It also creates a safe space for the PwD to feel valued and respected. Engaging with the CoS fosters a capacity-building environment, allowing the PwD to enhance their skills in communication, socialisation, and self-advocacy: “Every gathering Louise would share something about herself, she tells what she had done, what she likes, she just loves it… It meant that she had her voice heard which was great because it didn’t always get heard by that many people” (Parent of PwD) [20].

By giving PwD a voice it changes the perspective and understanding of people, including circle members and family, about people with disabilities: “We sort of overlooked her potential for photography, you know how it is when you are living with a person with disability, sometimes you’re just busy with the day-to-day so we overlooked her eye for photography. So people in the group help her set up what you call it “Instagram”, she takes pictures I write the story, she loves it, people comment and she loves it” (Parent of PwD) [20].

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The CoS also provides shared responsibility, a source of help for the carer, who typically takes on all the responsibility of caring for a PwD: “I would just send text message to someone and then these people, someone from the circle … come at the car up from the train station” (Parent of PwD) [20]. Another carer said ’…the Circle had ‘taken away the constant stress of being a carer 24/7 and that monumental responsibility for someone’s life’. Having felt suicidal and requiring long-term counselling, one parent described herself as “living a normal” existence because the Circle supported her as much as her child: “it gave me my life and it gave (child) hers” (Carer) [20]. The collective nature of Circles of Support and the sense of community reported by the many people involved were associated with family feelings of confidence, respect, reduced burden and an increased sense of belonging and wellbeing [23].

Better use of resources available to them.

A CoS can ensure PwD get full access to the services available to them:

• A study by Wistow et al. (2016) surveyed four parents and an unpaid carer to measure the quality of life for a PwD using the social care quality of life tool [19]. They compared the quality of life of a PwD with a CoS to an estimated scenario without a CoS The study reported that the PwD’s quality of life score with a CoS was 0.82, compared with an estimated 0.21 without it. However, these findings are at a high risk of reporting bias, includes no control group and includes a small sample size (n=5).
• In the same study, Wistow et al (2016) demonstrated how much money CoS saved 5 individuals with learning disabilities by arranging care packages for them to live at home (£7,000 to £80,000) compared with a fully staffed residential setting (£139,308 per year) [19].
• In their PhD thesis, Watson (2016) compared before and after results in 5 PwDs who had a CoS for 6-months using questionnaires, interviews and observations [24]. All outcomes improved over time including PwD responsiveness (23%), decision-making capability (50%) and number of conflicts amongst CoS members (-55%). A positive association was found between the closeness of a supporter and the PwD, and their degree of responsiveness to the PwD communications (n=6). Unpaid supporters had the highest number of intimate relationships with the PwD, but the paid/unpaid status of supporters had no effect on the PwD’s responsiveness (n=8). The results are descriptive only, with no statistical analysis, and includes a small sample size and short-term follow-up.
• Jay (2018) reviewed the outcomes from 10 individuals who had set up a CoS with Belonging Matters in 2016 and 2017 and categorised these into the NDIS Outcomes Domains (Table 2) [12]. The results are descriptive only, includes a small sample size (n=10), there is no control group, it is unclear how they can attribute all these outcomes to a CoS and not another reason, and it is unclear how these CoS were selected [12].

Table 2. Summary of 10 individual Circle of Support outcomes mapped to the NDIS Outcome Domains (Jay 2018)

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| | | the community; Royal Show exhibitor & contestant; AFL Club banner making team; assistant coach Spec O swimming; volunteer @ local AFL club; F1 GP volunteer roles; 2x shopping w own debit card |

• One Door Mental Health (2023) published online their findings from a study where they trained psychological case managers to become circle facilitators and established a Circle of Support for people with psychosocial disability for 6 months (Table 3)[25]. The study included 3 facilitators, however it is unclear how many PwD participated. The project demonstrated improvements in the feelings of loneliness and mental and physical health, building stronger trusting relationships and addressing barriers to connecting with people. The results carry a high risk of bias due to unclear methodology, the number of participants, how they recruited participants, whether baseline measures were conducted and lack of control group.

Table 3. Outcomes reported by participants who experienced a CoS for 6 months (One Door Mental Health 2023).

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redacted available to them, in addition to the formal supports that we were providing.

• Fong et al (2021) surveyed 153 parents of children with autism spectrum disorder and found after controlling for demographic factors and child behavioural problems, that satisfaction with informal supports that comprises of a network that may include family, friends and other parents of children with disability in the community, significantly predicted family resilience (p<0.001)[26]. The informal supports are not necessarily a Circle of Support but the findings indicate how support from friends and family can improve how well families cope with the stresses of raising a child with autism.

3.3 Risks of Circles of Support

Substituted decision-making and who is responsible.

Circles of support (CoS) face several risks, including substituted decision-making replacing supported decision-making and an undue focus on parental decision- making: “some CoS are established to support parental decision-making rather than the person with disability” (Author) [4]. The power CoS can have to make decisions is significant when the PwD cannot speak for themselves. And because the CoS is an informal arrangement, compared with a Microboard, “the potential for financial or other abuse likely increases” (Author) [27].

There is often difficulty in determining how much a PwD is legally responsible for their own decisions when they may not have understood the risks associated with a decision. Members of CoS bear some ethical responsibility for decisions made unless they formally distance themselves from those decisions (Author) [27].

PwD may not want a CoS.

Additionally, there may be a lack of consent from PwD to create a CoS. They may not feel comfortable in a group or having their private details shared with others. For these reasons, a CoS may not be required in all cases, and the PwD may prefer to continue with their existing supports or mentoring or peer support groups instead. The grey literature on CoS contains anecdotal stories of success but does not adequately consider the specific groups of people for whom CoS would benefit the most.

Lack of commitment from members of CoS

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Activities planned by the CoS for the PwD may not be carried out, leaving the person and their carers feeling let down. A parent of a PwD who had a circle of friendship at school found the connections didn’t translate to friendship out of school “at home, like the whole summer no one called on him, no one phoned, no one came to the door” [28]. However, there are often unrealistic expectations placed on people to commit to CoS that requires time and effort in and outside of meetings. For these reasons, a CoS may not be sustainable.

3.4 Benefits of Microboards

Supported decision-making

The benefits for Microboards are similar to Circles of Support. They empower PwD by promoting choice and control, allowing them to make decisions about their own lives through supported decision-making processes. A PwD said about their Microboard who employed their support workers “It’s good now. I don’t have 64 people taking care of me. These are my friends [present paid supports]” [29]. Another said “I’m getting more choice and control than I had before. I’m learning how to use it. I’m not a number. I have preferences. The most important choices for me are where I want to go, what I want to do, what I want to eat, what time I go to bed, and what time I get up. I have these choices now” [29].

Microboards also establish a succession plan that details long-term support strategies for the PwD, ensuring continued support even when family members are no longer alive. “I kind of feel like [my husband] and I could die because we’ve got these very committed people overseeing [our daughter’s] life and services and supports. You know, it’s so comforting to us to share this with people who have made such commitments to [her] life and that’s huge for me” (Parent of PwD) [15].

Benefit people of all ages

Deakin University’s evaluation of Microboards for Children program found that families with a Microboard were better equipped to advocate for systemic inclusion of their child or young person and that their child’s choice and control in their life was enhanced [17].

Additional support

Microboards also provide additional support, offering PwD opportunities for socialisation and friendships, that can significantly improve their mental well-being and sense of belonging: “Kate got an improved understanding and communication with those in the group so because they lost some of their fear of communicating

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with her and because she could see that they were actually interested in her she began to talk more to that circle of people, ladies in particular, and they became free to communicate with her… It gave Kate more social outlets because when she went to church, people knew more about her and so they could come and start a conversation with her”(Brother) [20].

Additionally, Microboards offer vital support for carers, alleviating some of their burdens and allowing them to navigate the system more effectively. “Having the Microboard step in around some of these difficult decisions was so invaluable to me because it was now shared decision making with a network of people bringing a variety of perspectives.” (Parent of PwD) [15].

Microboards have also been shown to lead to real improvements in the quality of life for persons with disabilities (PwD), resulting in a more enriched and fulfilling life experience. As one carer noted, “Having the Microboard just makes it really flexible for somebody with such high complex needs to not just exist, but to truly live. And without the Microboard, [he] wouldn’t have the unique, rich life that he does have” [15].

Safeguarding

Furthermore, Microboards enhance safeguarding by having multiple members oversee and advocate for the PwD’s rights and needs, ensuring they receive high- quality services and protection from potential abuse. A PwD commented “with the Microboard I feel I am the key decision maker. Respect and choice are the most important to me. I am more respected now, and I have more respect for myself. I like it a lot better than a group home. I can do what I want, whenever I want, as part of the community” (Malette 1996).

3.5 Risks of Microboards

Substituted decision-making

Setting up a Microboard can present several risks, particularly if the process does not fully consider the consent and desires of the PwD. If the PwD did not provide their consent to establish a Microboard, it can lead to feelings of disenfranchisement and undermine the core purpose of empowering them to make decisions for themselves. Additionally, there is a risk of substituted decision- making, where decisions are made on behalf of the PwD without truly reflecting their wishes and preferences. This can occur when those involved assume they know what is best for the PwD, rather than supporting them to make their own decisions.

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PwD not wanting a Microboard or able to choose members

The influence of family members in choosing Microboard members can negatively impact the PwD. Family members may select individuals who align more with their own views rather than the PwD’s best interests. Another risk is the assumption that everyone would benefit from a Microboard. This model may not be suitable for all PwD and the diversity of disabilities and personal situations means that a one-size-fits-all approach can be harmful.

Members exploit their position

Even with supported decision-making models, there are opportunities for financial or other forms of abuse. However, no data was identified on the incidence of such abuse [30]. Members of the Microboard could exploit their position of trust to benefit themselves rather than the PwD. An example of this is that a Microboard changed their constitution (from what Microboards Australia promote) to allow support workers to join. This is a conflict of interest and can make the PwD feel uncomfortable discussing matters with these support workers present.

This highlights the importance of careful selection and oversight of Microboard members to ensure they have the right intentions and competencies.

Legal ambiguity

The lack of clarity for third parties regarding who is legally responsible for decisions made by the Microboard can lead to confusion and potential legal disputes (see Legal responsibilities).

Alternatives unexplored and questionable benefits

Other drawbacks of Microboards, include the uncertainty regarding how they provide accountability [27] and the image of a corporate-faced support is a little confrontational. Succession planning and safeguarding may also be delivered in other ways [31, 32].

3.6 Quantitative findings on Microboards

• Cocks et al (2018) surveyed 29 members of a Microboard (Table 4)[33]. The results showed the Microboard had assisted in finding paid employment, improving community engagement and a social life and achieving life goals. There were ongoing challenges identified, including few opportunities to socialise, few close friends or valued roles in society and long term planning by the Microboard. There is a high risk of reporting bias since the findings are

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cross-sectional, based on a small sample size, participants were attending a Microboard conference, no control group, and no adverse events were captured.

Table 4. Outcomes of 29 participants surveyed about their experience of Microboards (Cocks 2018).

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redacted

Note: Focal person is the person with the disability who has a Microboard

4. Barriers and enablers to setting up and maintaining Circles of support and Microboards.

Fifteen papers from the academic and grey literature reported on the barriers and enablers for setting up and maintaining circles of support and Microboards. All the data were qualitative, derived from interviews and focus groups with facilitators, carers of people with disabilities, individuals with disabilities, members of circles of support and Microboards, and service providers. Of these papers, seven were from Australia (47%), six from Canada (40%), two from the United States (13%). The most reported barriers and enablers found in the literature are shown in bold, the corresponding references and examples quotes can be found in the Supplementary Material Tables S7-S9.

4.1 Barriers for Circles of Support

Setting up CoS faces numerous barriers that can impede their effectiveness and sustainability. One challenge is the limited informal support networks available to some individuals that makes finding committed members to join the CoS difficult.

Often people with intellectual disabilities do not have a strong support network since their family and service providers do not understand the significance of informal relationships and fail to provide the support necessary to form and maintain such relationships [23].

CoS may facilitate or work well as a supportive decision-making strategy, but unhelpful group dynamics can undermine their effectiveness. Having a reliable source of funds to pay for a facilitator is another major barrier. Planners within the NDIS often make inconsistent decisions on whether to fund the use of a facilitator.

The sustainability of a CoS is also a concern, as maintaining consistent support from members over time can be practically and emotionally challenging. Upskilling members to ensure stay they focused on the purpose and goal of the CoS meeting is also a challenge. Ineffective coordination and facilitation can further hinder the success of a CoS.

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Additionally, there is a lack of published, well-designed, long term quantitative and qualitative studies on running a CoS, so establishing and maintaining effective models is challenging.

4.2 Enablers for Circles of Support

Several key enablers contribute to the success of CoS. Effective facilitation can help guide the group, foster a collaborative environment, and ensure members maintain their focus on the individual’s goals. Having an existing social network and supportive family makes it easier for the PwD to find and invite members to join their CoS. A collaborative CoS enables diverse input and shared responsibility, ensuring that the carer is not burdened with all the group’s tasks.

4.3 Barriers for Microboards

A person setting up a Microboard can be faced with several barriers. The time commitment required can be daunting for many potential members, thus impacting finding suitable individuals who are willing to join. Even when members are found, there may be a lack of commitment from board members, leading to inconsistent participation and support.

Administrative challenges add another layer of complexity, as does the necessity to navigate funding eligibility and secure adequate NDIS funding, which is often insufficient. Managing and funding services, along with the challenge of hiring employees, further complicates the process. The need to hire a facilitator can be a logistical and financial burden for families.

Additionally, a Microboard may have limited authority when it comes to some decisions, such as those around medical treatment. A Microboard is not the only way to provide safeguarding. Informal approaches such as circles of support are an option. The efficacy of Microboards in offering greater accountability is also questionable. Ultimately, a Microboard is not suitable for everyone: “Microboards have been found to hold little appeal for people with mental illness…; or for people with ABI who are more likely to have circles of like-age informal partners/supporters; or for people with dementia struggling to find a single supporter, much less a pool of people” [4].

4.4 Enablers for Microboards

Setting up a Microboard involves several enabling factors that contribute to its success. A key aspect is ensuring that the PwD chooses to set up a Microboard. The PwD is often accompanied by someone close to the PwD, such as a family

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member or close friend, who plays a vital role in setting up the Microboard. To ensure sustainability and effectiveness of the Microboard, a person-centred approach is used to ensure that all decisions and actions are tailored to the needs and goals of the PwD.

Providers often assist in establishing Microboards, offering expertise, training and resources to navigate the complex steps involved. Facilitator support is also crucial when starting up a Microboard. They also help the Microboard become independent over time, by empowering members to manage the board themselves.

Legal status granted to individuals in the Microboard provides a formal structure and authority, enhancing accountability and legitimacy compared with CoS. Support from agencies in Ontario Canada can help families receive funding for a Microboard.

Having a legal agreement can enable members join and leave the Microboard when needed, and ensure there is an agreed minimum number of members and meetings to be held each year.

Microboards must keep records of what is discussed in meetings including how plan and decisions are made. This offers a layer of accountability to the board to be acting in alignment with the vision and values of the person.

An effective Microboard will play a role similar to service providers, by finding the right supports that meet the PwD’s needs and preferences.

5. Summary of key findings

The following Tables 5-13 include 12 considerations for the NDIA (in purple), the evidence that informed these considerations, and a commentary on the quality of the evidence that impacts our confidence in the results.

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5.1.1 Funding considerations

Table 5. Who the NDIA may consider funding CoSAM for.

1. The NDIA might consider funding the cost of CoSAM facilitators for individuals:

• who have intellectual disabilities, cognitive disabilities, communication issues or complex needs
• would benefit from supported decision-making structures, enhanced social connections, safeguarding, advocacy, and help to improve their quality of life and achieve personal goals.
• regardless of whether they have an existing support network.
• who are children, adolescents, or adults, provided they understand what these supports are and can communicate their wish to establish one
• the NDIS considers a CoSAM is reasonable and necessary

Evidence

• Generally, people with intellectual or cognitive disabilities, communication issues, or complex needs use a CoSAM.
• CoSAM can be established for individuals of any age. For school-aged children, a CoSAM (such as a Circle of Friends) can involve their peers.
• Socially isolated individuals or those with little to no family or friends are likely to benefit the most from a CoSAM.
• PwD with an existing support network can also benefit from a CoSAM’s support. Often, parents or carers may feel overwhelmed and unable to fully understand or address their child’s needs. A CoSAM can help reduce the burden on parents and carers, providing them and the PwD with additional support.
• Not all PwD will require or benefit from a CoSAM. Some may feel uncomfortable in a group environment or sharing personal details with others, or they may already have a supportive, inclusive community.
• First Nation peoples support a person with a disability with their decision-making in a similar way to CoS. How they support an individual with a disability is the same for any member of their community.

Other considerations

• CoSAM can help mitigate the risk that parents or carers make all the decisions for a PwD.
• It is important for the PwD, family or carers to understand there are no guarantees of success with a CoSAM.
• Given the lack of evidence on CoSAM in other populations, it may not be suitable to promote these supports to a wider population at this point in time.

Quality of evidence

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• The evidence was gathered from grey literature and interviews with seven providers from Australia and Canada.
• There is a risk of reporting bias in the interviews with providers who may promote the benefits of COSAM and minimise any risks or harms.
• No evidence was found regarding the effectiveness of establishing COSAM among different cohorts of PwD.
• Providers have set up CoS for a few people with CALD backgrounds but had little insight on how to best approach these cohorts.
• The qualitative evidence on First Nation’s people was based on one quote.

Table 6. Whether to fund CoSAM

2. The NDIA could consider asking planners and TAPIB to explore the following questions when deciding whether a CoSAM is funded within the participant’s reasonable and necessary budget:

• What information has been provided to demonstrate the CoSAM will be beneficial for this individual?
• What goals does the individual, along with their CoSAM, hope to achieve?
• Is the request for decision-making support based on the participant’s choice, and will they be actively involved in selecting members?
• Why does the participant prefer setting up a Microboard over a Circle of Support?
• Does the provision of Circle of Support or Microboards duplicate supports provided through other NDIS funding or alternative mechanisms, such as advocacy and support coordinators?

3. The NDIA could recommend annual reviews of funding for individuals with CoSAM to ensure they remain beneficial to PwD. This is only needed for the duration a paid facilitator works with the CoSAM (approximately 2-3 years).

Evidence

• The decision that the NDIA could consider funding CoSAM was based on the review of benefits versus risks (See the summary below).
• The questions listed above were based on 1) current questions asked by TAPIB and 2) some of the harms identified in the review (listed below).

Benefits of COSAM

• opportunities for socialisation and friendships.
• supported decision-making that provides choice and control.
• saving money by making better use of services available.
• accountability of supports.

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• safeguarding of PwD by having more people engaged in their life.
• an enriched and fulfilled life that includes securing open employment.
• develop and support their capacity to undertake activities that enable them to participate in the community.
• supports plans to maximise their independence.
• building their confidence and skills to choose and control their own supports (capacity building).
• a safe space for PwD to communicate.
• committed, reliable support.
• succession planning.
• long-term support especially when family members age and die.
• improved understanding by CoSAM members of how a PwD communicates.

For family and carers, CoSAM has provided:

• additional support and alleviated their burden.
• increased sense of belonging and wellbeing.
• better understanding of their child’s abilities and interests.

Challenges, risks, harms

• lack of consent from PwD to form a CoSAM.
• some PwD may not feel comfortable sharing their personal details with others.
• substituted decision-making.
• unclear legal responsibilities for Microboard members.
• relationship with members did not translate into friendships.
• ideas or social activities were not actioned.
• financial abuse with a Microboard.
• unclear how CoSAM provide accountability of services delivered to PwD
• employee complaints.
• the legal responsibility of a PwD in a Microboard, may be limited by their capacity to understand and make informed decisions. How this is considered if legal matters arise is unclear.
• Microboards changing their constitution to allow support workers to join. It’s a conflict of interest and the PwD may feel uncomfortable discussing matters with them present.
• not open to other models of supported decision-making, safeguarding and succession planning are available.
• confronting image by having an incorporation represent a PwD
• potential duplication of services

Other considerations

How the decision to consider funding CoSAM was weighed up.

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• Weighing up the benefits against the risks is challenging because the frequency of harms versus benefits is unclear.
• Based on the available evidence, CoSAM appears to benefit people with intellectual and cognitive disabilities, communication issues or complex needs.

What a planner might consider when reviewing a funding request

• The questions planners could ask, aim to ensure a CoS or a Microboard: 1) meets the needs of the individual, 2) are requested by the individual and, 3) are not a replication of other supports.
• The benefits participants expect should map on to the NDIS goals such as: 1) choice and control; 2) daily living; 3) relationships; 4) home, 5) work and 6) social, community and civic participations.

Duplication of supports

• There is the potential that CoSAM are a duplicate of services provided by support coordinators, who may assist PwD to review their NDIS plan, access services, and provide supported decision-making.

• CoSAM may also be a duplicate of what an advocate provides - to uphold the rights of PwD who are unable to act, speak or write about a difficult situation on their own, or don’t have a support network to help them.

• Planners are often unclear what the differences are between the role of a support coordinator and facilitator and may reject a funding request on these grounds.

• According to providers, the differences between services provided by a CoSAM versus support coordinators are:

  o Support coordinators have greater knowledge of the NDIS. o CoSAM support the PwD to choose a service or provider that their support coordinator has found. o CoSAM advocate with the PwD if they are not being heard by a service. o CoSAM can explore lifestyle options for the PwD that are outside of the NDIS goals. o Support coordinator’s role is time limited. o CoSAM can spend more time exploring what a PwD wants or needs in all aspects of their life.

Quality of the evidence

• The evidence was mostly gathered from 11 academic qualitative studies and 14 grey literature reports where they interviewed PwD, carers, facilitators, providers, or provided academic opinions, with sample sizes ranging from 1 to 32.
• Some outcomes were obtained from the 7 interviews with providers as part of this review, and from quantitative data in academic and grey literature.
• Some outcomes were reported as secondary quotations from other papers or without quotes, thus complicating data extraction and reducing result reliability.
• There is a notable risk of reporting bias, particularly from interviews with providers, studies where authors received funding from providers, and market-driven reports in the grey literature.

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• Risks associated with CoSAM were mostly identified from one academic paper (Nunnelly 2015) and interviews with providers. Providers suggest they are infrequent however they do not monitor the activities of CoSAM long-term (>2 to 3 years).
• No long-term studies were identified that assessed the frequency of adverse events compared with positive outcomes. The scarcity of data on adverse events, may either be due to the challenge of capturing this data or positive reporting bias.
• Only one cost estimate was identified (n=5) that compared the cost of PwD living in fully staffed residential housing versus living independently with services the CoS helped establish. The authors used this comparison to calculate the amount of money the PwD saved due to the assistance of CoS.
• The quantitative evidence was generally low to moderate quality. They used small sample sizes (n=4 to 10), were cross-sectional or data was collected over short durations (6 months), they were not controlled for and potentially biased in how they selected participants (i.e., surveyed providers who were attending a conference).

Table 7. Duration of funding for CoSAM

4. For CoS, NDIA could consider funding the cost of a facilitator who supports the establishment of a CoS, delivers training, and facilitates meetings, for approximately 3 years.

5. For Microboards, the NDIA could consider funding the cost of a facilitator who supports the establishment of a Microboard and delivers training to members (but does not facilitate meetings) for approximately 2 years.

Evidence

Cost estimates were based on information provided by Australian providers during their interview and found in grey literature.

Cost estimates

• Cost estimates are based on the time needed with a facilitator.
• Facilitators typically work for a CoSAM provider.
• Facilitators attend the CoS meetings (but not a Microboards), so they generally work longer with a CoS compared with a Microboard (3 versus 2 years)
• CoSAM are set up for life, however, NDIS funding is only needed for the time a facilitator works with the CoSAM.
• CoSAM meetings are typically held every 6-8 weeks
• Estimates for CoS varied across the different providers.
• The following are estimates only.

| Circle of Support | Microboard |

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| Establish | | | | Set-up hours | 10 to 30 hours | 168 hours over 2 years | | Cost of facilitator per hour | $190 | $100 | | Total cost | $1,900 to $5,700 | $16,800 ($8,400 per year) | | Maintaining | | | | Total hours per year | Estimate 1: 30 to 50 hours
Estimate 2: 150 hours | | | Cost of facilitator per hour | Estimate 1: $100
Estimate 2: $77* | | | Training and mentoring | | $3,800 | | Total cost per year | Estimate 1: $3,000 to $5,000
Estimate 2: $10,000 | $3,800 |

Note: Estimate 1 is from CoSAM; Estimate 2*: Community Living Projects whose costs are subsidised

Other considerations

• The NDIA could consult with the Pricing Reference Group for advice on pricing arrangements for CoSAM facilitators.

Table 8. Risks with funding CoSAM

6. The NDIA could consider whether NDIS funding should cover a Microboards’ costs for insurance, bookkeepers, accountants, HR advice, ongoing training and advice.

Evidence

• Evidence on the costs associated with running a Microboard were identified from interviews with providers, however, they were unclear how these costs are covered.
• Microboards Australia charges members to attend training after they’re established, for $3,800 per year (estimate only).

Other considerations

• For Microboards that hire employees (currently 4 out of 20 in Australia) it is unclear how they pay for insurance, services from accountants and bookkeepers, and human resources. It is possible they claim these costs by invoicing the PwD who receives money from the NDIS and then pays the Microboard.

5.1.2 Establishing a COSAM

Table 9. Choice between a CoS or Microboard.

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7. The NDIA could consider funding either a CoS or Microboard.

Evidence

PwD and their family or carers, consult with providers to determine whether a CoS or a Microboard is more suitable for their needs.

Both CoS and Microboards meet every 6-8 weeks to help the PwD plan and achieve their personal goals and provide supported decision-making.

The differences lie in the:

o oversight provided by a facilitator who attends CoS meetings. o incorporation of Microboards so they can hire support workers. o potential for Microboards to charge the NDIS for additional running costs.

A CoS may be best suited for: o those with a strong existing support network. o prefer flexibility in member composition and to allow short-term membership to help with a particular goal. o members who are not interested in becoming a Microboard.

Conversely, a Microboard may suit those: o without a strong support network and would benefit from formalised long-term support. o who require oversight across various aspects of the PwD’s life. o their existing support network is at risk of falling apart.

Microboards become non-profit entities that have the legal authority to manage finances and staffing matters.

Microboards indirectly use NDIS funds to employ support workers for the PwD. They invoice the PwD, who pays for the support worker and claims the money back from the NDIS.

Microboards have fiscal responsibilities, requiring insurance, accountants or bookkeepers, and HR services. A treasurer ensures financial transparency through annual audits.

It is unclear how additional services needed by a Microboard are paid for.

Both CoSAM can collaborate with guardians (i.e., people who have the authority to manage the legal and non-legal affairs of a person such as power of attorney or Centrelink nominations) to ensure NDIS decisions align with the PwD preferences and interests.

Quality of the evidence

The evidence primarily came from interviews with seven providers in Australia and Canada, each advocating for their respective model (Circle of Support or Microboard) while offering limited insight on the potential drawbacks of the alternative.

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Table 10. Establishing a network for PwD who do not have one.

8. The time needed to set up a COSAM will be longer for PwD who do not have an existing network. The time invested by facilitators to find members and establish new relationships for the PwD, will be charged to the PwD.

Evidence

• Providers will establish a COSAM for a PwD, regardless of whether they have an existing support network. They work with the PwD and their family or carers to develop a network map, identify who they could invite to join the CoS or Microboard.

• It may take up to 1 year to set up a CoS and 2 years for a Microboard.

• If the PwD does not have an existing network, providers may:

  o consider previous support workers. o work with the PwD to build on existing community connections and friendships. o explore opportunities for the PwD to begin building new connections and friendships. o collaborate with charities who can assist in forging new friendships.

• Providers do not market COSAM. They wait for PwD and their carers to contact them to set one up. Therefore, there is a gap in service provision for PwD who are socially isolated or have minimal existing supports and are unaware that COSAM exist or how they could benefit from them.

• Providers explored the idea they could disseminate marketing material through LACs, community organisations and via the COSAM website.

Quality of the evidence

• The evidence was gathered from interviews conducted by the reviewer with seven providers in Australia and Canada. No biases were noted in their responses to the research question regarding how to set up CoSAM for PwD who do not have an existing network.
• There was no published evidence about costs and strategies for building and maintaining social connections for people without existing family or informal core supporters.

5.1.3 Implementing CoSAM

Table 11. Guidance to support practice change.

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9. The NDIA could consider strengthening guidance and resources on CoSAM for TAPIB and planners, including details on what they are, how they’re established, who they might benefit, the known benefits and risks of these supports.

Evidence

• Planners often do not know what COSAM are.
• There is inconsistent decision making and delays in decision making on whether to fund COSAM.
• Planners often don’t understand how COSAM facilitators differ to the role of support coordinators.

Other considerations

• See Table A2 in appendix for information on how to establish and maintain a COSAM.

Quality of evidence

• Evidence was obtained from interviews with providers in Australia, along with reports published online. There is a minimal risk of bias informing this consideration since it is based on the typical experience of participants when requesting funds from NDIS.

Table 12. Administering CoSAM within the NDIS.

10. Agency managed NDIS participants cannot access CoS or Microboards. This has implications for participants who may benefit from this support.

11. Since CoSAM providers are not registered with the NDIS, there are implications for quality assurance given that they are not subjected to regular audits.

Evidence

The above two statements are written in response to a barrier identified in the review:

Barrier

• there is inequitable access to COSAM, since only PwD who have a self-managed or plan managed funds can access CoSAM organisations that are non-registered NDIS providers.

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Other considerations

• If considered important, a decision whether COSAM providers and individual Microboards become NDIS providers, would need to be made by the NDIS Quality and Safeguards Commission.

• If individual Microboards (not just the providers) are registered as NDIS providers, they too would be subjected to regular audits against NDIS Practice Standards. This will provide some oversight on their conduct.

• Microboards keep records of what is discussed in meetings, including how decisions are made. These records could be used as part of an audit.

• If the NDIA introduced a unique line item for CoSAM facilitation, it would:

  o allow the NDIA to monitor the use of and outcomes of people who set up COSAM. It is currently unclear who use these supports. o help address the planner’s confusion regarding the difference between support coordinators and COSAM

• There appears to be a shortage of facilitators in Australia, so expanding the service of CoSAM to more participants may be difficult to achieve.

Quality of evidence

• Evidence for the above statements was derived from interviews with providers in Australia and reports published online.
• There is an incentive for providers to become registered because it will increase their reach to participants and their income.
• An analysis exploring the feasibility of CoSAM organisations and Microboards becoming registered NDIS providers was beyond the scope of this review.

Table 13. How to promote sustainability of CoSAM

8. To improve the likelihood of a successful CoSAM, the NDIS could consider promoting:

People with disabilities

• receive advice from CoSAM providers on whether a CoS or Microboard is the best option
• receive help from CoSAM providers to prepare a case for NDIS funding.

Providers

• assist families and PwD screen members for conflicts of interest or not having the PwD’s best interest.
• educate Microboard members on their legal capacities and responsibilities, especially around health-related decision making.
• deliver training to facilitators, members of COSAM, and potentially PwD to enhance skills in supported decision-making, advocacy, social valorisation, how to promote sustainability, safeguarding and the role of members.

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• facilitate networking opportunities between members of CoSAM to share experiences, resources, and solutions for common challenges.

Facilitators

• ensure CoSAM members communicate well, engage in supported decision-making, and commit to achieving goals of the PwD.
• prepare the CoSAM to function independently of a paid facilitator.

CoSAM

• the goals and expectations of a CoSAM are clear and members have a person-centred approach whereby they listen and learn about what matters to the PwD.
• their conduct is held to account by a facilitator, provider or potentially the NDIA or NDIS Quality and Safeguards Commission.
• members can collaborate with legal guardians or powers of attorney to align decisions with the best interests and preferences of the PwD.

Evidence

• Evidence for the above considerations was derived from the review of barriers and enablers, and from interviews from providers.
• Some of the above considerations are currently carried out by providers but are important to reiterate to improve the likelihood of a successful CoSAM.

Enablers

To establish a CoSAM:

• providers write explanations on why a PwD needs a CoSAM
• facilitators help identify eligible members for the COSAM
• PwD’s involvement in setting up the COSAM
• a PwD has a friend or family to help set up a COSAM
• members and facilitators receive training on topics such as establishing a COSAM, what their role is, supported decision-making, creating a positive culture
• the PwD has an extensive social network

For ongoing success of CoSAM:

• members are willing to function independent of a facilitator
• providers offer ongoing advice to members when needed
• providers deliver ongoing education for members so they stay up to date on a range of topics, like sexuality for PwD
• collaborative efforts among members
• for Microboards, having a legal agreement on a minimum number of members and meetings
• for Microboards, having a constitution that members agree: 1) on what they hope to achieve and 2) that their role is to provide supported decision-making
• their conduct is held to account

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Barriers

Relating to the NDIS:

• explaining to NDIS planners why a CoS or Microboard is needed can be difficult for PwD and their family or carers. They may not be able to present a convincing case without help from a provider
• confusion by NDIS planners regarding the role of facilitators versus support coordinators
• inconsistent and delayed funding decisions by NDIS

Other barriers:

• finding suitable members
• for Microboards, not having the minimum number of members needed, 5 or 6
• not enough facilitators
• time commitment of members
• administrative challenges such as managing employees
• support workers and family not understanding the significance of friendships and failing to provide the support necessary to form and maintain these relationships (prior to establishing CoSAM)
• conflict within the group
• lack of evidence on different models of a CoSAM
• limited authority to represent the decisions of a PwD, it requires guardianship or power of attorney
• it may take < 2 years to be see benefits
• limited capacity of PwD who have high support needs to be socially active

Other considerations

• How the NDIA could address the above considerations was not explored in this review.
• If the NDIS Quality and Safeguards Commission decides that CoSAM providers should become registered NDIS providers, they could use the above information to design guidance and best practice information for these organisations as part of their registration responsibilities.

Quality of the evidence

• The evidence primarily stemmed from qualitative studies and reports involving interviews with PwD, their families or carers, and facilitators.
• Sample sizes were small, with a median of 5 for PwD and 16 for parents, members, or facilitators.
• Quotes were often used to substantiate findings, although some outcomes were presented without quotes, or they were quotes of made by authors in other papers.

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6. Limitations of this evidence

The limitations of the findings on CoSAM include:

1. Methodological constraints: mostly qualitative data identified, with very little quantitative data on the effectiveness of CoSAM.
2. Risk of reporting bias: results may be biased if the researchers were funded by CoSAM organisations
3. Data quality and availability: no data on long-term benefits versus harms, cost- effectiveness, and comparisons with alternative supports such as support coordinators.
4. Limited perspectives: we only conducted interviews with providers. It may have been helpful to interview PwD, carers or families, support coordinators, planners, and advocates.
5. Complexity of the intervention: the benefits of CoSAM may take years to materialise.
6. Recognising diversity in supported decision-making: the lack of data on First Nations people, individuals identifying as LGBTIQ, and from CALD backgrounds, makes it difficult to know if or how the CoSAM needs to be adapted for these groups.
7. Populations studied: limited data on different cohorts of PwD, so it is difficult to know if CoSAM are not suited for some groups.
8. Evidence summary: this is not a systematic review, the quality of the papers was not formally assessed, nor did we conduct a thematic analysis of the qualitative evidence.
9. Grey literature: more than half of the data sources were from the grey literature, thus they were not peer-reviewed.

7. Strength of evidence

The evidence identified for this review was mostly anecdotal, but it provided rich data on the experiences of CoSAM among PwD, their families or carers, and facilitators. The experiences from PwD, their families, and carers were predominantly positive, thus adding reassurance that the intended beneficiaries of CoSAM are seeing the benefits. A key report that informed our understanding of the legal complexities and potential risks or harms of CoSAM was a Canadian study by Nunnelly for the Ontario Law Commission [27]. A significant amount of information came from interviews with seven CoSAM providers in Australia and Canada, who shared detailed insights based on their extensive experience, ranging from a few years to over a decade.

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These providers were generally well-informed and were open to answering all questions, including any follow-up queries, and were willing to meet again if needed.

8. Research gaps

The following research gaps were identified from this evidence summary:

• Long-term outcomes of individuals who set up a CoSAM and compare these to other decision-making supports (i.e., peer-support groups, mentoring, decision-making coaches) and usual supports (i.e., support coordinators).
• Well-designed studies, such as RCTs or prospective cohort studies, that use validated tools to measure outcomes, including quality of life and a cost- effective analysis.
• A research program to understand how to build social connections for people with intellectual or cognitive disabilities, communication issues and complex needs, who do not have existing strong family or informal relationships, should be funded as a priority.
• NDIA data on the outcomes of PwD who use CoSAM.
• Insights from support coordinators and advocates on how they understand their role is distinct from and/or complements a CoSAM.
• The effectiveness and/or appropriateness of CoSAM in different cohorts of PwD, CALD and First Nations’ people.

9. Next steps

This evidence review provides an overview of the published research, grey literature, alongside the providers perspectives on the implementation and effectiveness of CoSAM for supported decision-making. The review highlights some positive findings supporting the use of CoSAM in intellectual disabilities, cognitive disabilities, communication issues or complex needs cohorts, but the evidence is low to moderate quality owing to the lack of well-designed long-term studies, revealing research gaps and areas of uncertainty.

In the absence of strong research evidence and the need to consider other forms of evidence (e.g., agency data, additional participant perspectives from the NDIS, and other expert voices in supported decision-making), it may be worthwhile to develop an evidence-to-decision framework with an advisory panel with people such as topic experts, providers, support coordinators, advocates, researchers, PwD, planners, and members from TAPIB, the policy team, Pricing Reference Group and NDIS Commission. This panel would deliberate on various forms of evidence to produce

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evidence-based advice and recommendations, that can inform policy and operational guidelines. This approach will create a structured and transparent decision-making process, building trust and credibility in the decisions and recommendations, especially where uncertainty exists.

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10. Appendix

Table A1. Summary of papers included in this review

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| 6. Cocks 2018 [33] | Report (grey literature) | Australia | PwD, family members, friends, and facilitators. N=29 | Circles of Support and Microboards | Quantitative | Survey | | 7. Despott 2023 [8] | Report (grey literature) | Australia | Facilitators, authors. | Circles of Support and Microboards | Qualitative | Literature review | | 8. Fong 2021 [26] | Academic literature | Canada | Parents of children with autism spectrum disorder. N=163 | Circles of Support | Quantitative | Survey | | 9. Gold 1996 [28] | Thesis (grey literature) | USA | Mothers of a child with autism, students, teachers, facilitators. N=24 | Circle of Friends | Qualitative | Interviews | | 10. Jay 2003 [35] | Report (grey literature) | UK | Parent of child with disability. N=1 | Circles of Support | Qualitative | Literature review and case study | | 11. Jay 2018 [12] | Report (grey literature) | Australia | Staff members, family, circle members and PwD. N=17 | Circles of Support | Qualitative and quantitative | Interviews and surveys | | 12. Lockman-Turner 2022 [21] | Report (grey literature) | USA | Person with intellectual disability. N=2 | Circles of Support | Qualitative | Interview | | 13. Malette 1996 [29] | Thesis (grey literature) | Canada | People with severe disabilities. N=3 | Microboard | Qualitative | Interviews and observations | | 14. Morris 2024 [36] | Academic literature | Canada | Board members (n=21) and providers (n=2) | Microboard | Qualitative | Interviews |

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| 15. Nunnelley 2015 [27] | Academic literature | British Columbia, Canada | Lawyers, facilitators, providers, members, parents, advocates, researchers, third parties (n=19) | Circles of Support and Microboards | Qualitative | Interviews and literature review | | 16. Nuri 2024 [37] | Academic literature | Canada | Providers (n=16) | Circles of Support | Qualitative | Interviews | | 17. One Door Mental Health 2023 | Report (grey literature) | Australia | People with psychosocial disability (unclear) and facilitators (n=3) | Circles of Support | Qualitative | NR | | 18. Rother 2012 [38] | Policy paper (grey literature) | Canada | People with a CoS and members of CoS. N=6 | Circles of Support | Qualitative | NA | | 19. Rowlands 2002 [39] | Academic literature | Australia | People with traumatic brain injuries (n=10), family, circle members, providers (n=9) | Circles of Support | Qualitative and quantitative | Interviews | | 20. Ryan 2019 [40] | Thesis (grey literature) | Ireland | Family or carers of people with profound intellectual and multiple disabilities. N=26 | Doesn’t focus on either; explores perspectives of family carers and references CoS in discussion | Qualitative | Interviews | | 21. Spagnolo 2011 [41] [15] | Academic literature | USA | People with psychiatric disabilities (n=8) and supported employment staff (n=7) | Circles of Support | Qualitative | Interviews |

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| 22. Stainton 2020 | Academic literature | Canada | Members of MBs for people with intellectual and developmental disabilities (n=32) | Microboard | Qualitative | Interviews | | 23. Taylor 2022 [17] | Academic literature | Australia | Families of children with disability (n=10) | Microboard | Qualitative | Interviews | | 24. Watson 2016 [24] | Thesis (grey literature). | Australia | Adults with severe disability or profound intellectual disability, supporters (n=19) | Circles of Support | Qualitative and quantitative | Interviews | | 25. Wistow 2016 [19] | Report (grey literature) | UK | Parents of child with disability and carer (n=5) | Circles of Support | Qualitative and quantitative | Interviews and surveys |

Table A2. Benefits of Circles of Support

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| 4. | Opportunities for socialisation and friendships | “I think the Circle helps people with a disability to move from living isolated lives that are very much controlled by agencies and traditional supports” (Facilitator).
“There’s a huge difference between saying to a friend or acquaintance, “My parents are dying and I could really use your help in taking care of my brother” and saying, “A few of us get together to shoot some 8 ball and drink beer on Thursday nights…would you like to join us?” As we’re learning to shift our focus toward finding enjoyable things people can do together, our concerns about asking for help are becoming less relevant.” (Parent of PwD) | 4 | [21, 27, 28, 38] | | 5. | Additional support for PWD | “We’ve actually shown that a circle still has relevance for someone who has no family in their life, that you can actually start to provide some of these things. It’s not a case of ‘who will care about me when I’m gone and what will I be doing when they’re gone?’, it’s actually around ‘what can I do to have something now, that resembles a life?’ that we’d like for someone to have, and be worried about when it’s absent… Did we achieve a sustainable Circle of Support for Colin? No. But does he have a new pair of shoes and doesn’t have wet feet, and did someone take an active interest in his life? Absolutely” (Inclusion Melbourne, CEO). | 3 | [12, 20, 27] | | 6. | Provides supported decision-making | “A facilitator in Ontario emphasised that parents sometimes need guidance on how to support their son or daughter’s autonomy and right to take risks” (Author’s quote on behalf of facilitator). | 3 | [22, 24, 27] | | 7. | Accountability of providers/services | “I think it’s valuable for group homes and services because it keeps them accountable. …So, I think the value of circles is it makes services accountable for a person and to do the right thing. That’s like a big element of advocacy there” (Circles of support program coordinator). | 2 | [20, 37] | | 8. | Additional support for carers | “Interviews with primary informants showed how Circles made significant contributions to their own emotional support as well as the individual’s. Some said they might have been unable to continue caring without the support of the Circle” (Author on behalf of carer). | 2 | [12, 19] | | 9. | Advocacy | “Being able to liaise powerfully with a range of professionals who were involved in planning Jonathan’s future, including health, social services, education, speech therapists, carers and the providers of residential care” (Parent of a young adult with disability). | 2 | [12, 28] |

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| 10. | Capacity building | “Kate got an improved understanding and communication with those in the group so because they lost some of their fear of communicating with her and because she could see that they were actually interested in her she began to talk more to that circle of people, ladies in particular, and they became free to communicate with her… It gave Kate more social outlets because when she went to church, people knew more about her and so they could come and start a conversation with her” (Brother, circle member). | 2 | [20, 21] | | 11. | Changed perspective/enhanced understanding of PWD | “I think number one, the value of having a circle for a person with a disability is that they internally see that they have value because people are coming for them. People are coming because they are interested in them as a person and not as a person with a disability who needs services and assistance, I think that’s really good” (Cos facilitator). | 2 | [20, 24] | | 12. | Provides safeguarding | “In the words of one informant, “the whole point is that there’s more than one person”. Another talked about the value of having people watch and balance each other, thus forming an informal system of checks and balances” (Informant) | 2 | [20, 27] | | 13. | Safe space for PWD | “Craig, I call him the yes-man. He just says yes all the time. He’ll just say yes to anything. But at one circle meeting he was upset about his house and we asked him “Craig, how does this make you feel?” and he said, “I feel really sad about this … and it was amazing. So I think there’s a place for a circle to create a really safe environment for a person where they’re able to express what they’re actually feeling” (CoS program coordinator). | 2 | [8, 20] | | 14. | Shared responsibility for the carer | “It’s that informal support, it’s be mindful of the care recipient, they’re comfortable with the people around them, because they know them, they’re family, they’re friends. And the outcome for us working with the carer is to give that carer a break from their caring role. They don’t have to take on all of the responsibility of caring for that care recipient when other people can come on board and help… services in the future are not going to be always available but this informal capacity or informal support allows the carer to relax, because they know the care recipient is being supported by other people” (Lead of the Carer wellbeing disability support program). | 2 | [20, 28] | | 15. | Succession planning | “It’s a group for Mum and Dad, to make decisions. It’s like a think tank or a brains trust …long-term, if Mum and Dad suddenly aren’t there, there’s a group of people that intimately know what Mum and Dad wanted for their son or | 1 | [20] |

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| 16. | Additional support for carers and PwD | “Relationships with education and social care professionals were described as very difficult, protracted and stressful for some families, and the Circle provided an essential source of support. One primary informant described how it enabled them to ‘go to services with the solution and ask for funding not for help with the problem” (Author on behalf of carer). | 1 | [19] | | 17. | Additional support from a facilitator | “The facilitator brings structure, intentionality and accountability that speeds up how quickly things happen” (Author, on behalf of CoS). | 1 | [12] | | 18. | Cos improved quality of life | “Informants considered the Circle had impacted positively on each individual’s quality of life and that outcomes would have been substantially worse across most domains if the Circle had not existed. Indeed, the group as a whole had a reported score of 0.82 compared with an estimate of 0.21 without the support of the Circle. Thus, the reported gain in overall SCRQoL was at the substantial level of 0.61” (Author’s quote). | 1 | [19] | | 19. | CoSAM can help with NDIS funding | “COSAM can support a person to think about their needs and outline their goals, essential to applying for and getting an NDIS plan” (Author’s quote). | 1 | [8] | | 20. | Facilitator can help find an informal support network | “Recruits volunteers interested in going out regularly to a music or sporting event with a person with intellectual disabilities. They are recruited through advertising, social media, and corporate organisations and given one day of training in small groups which includes information about the aims of the program” (Author’s quote). | 1 | [34] | | 21. | Financial benefit and alternative to residential care. | “Although some cost data are missing, the available data show total costs of the most expensive care packages well within the nearly £140,000 annual unit cost of residential care for people with severe learning disabilities (which may themselves have been insufficient to meet the needs of the three people with high level needs)” (Author’s quote). | 1 | [19] | | 22. | Goals of CoSAM are person-centered, address funding and services, and social connections | “That being said, some common themes emerge. Three of these are: (i) individualised funding and service delivery; (ii) friendship and community (and, relatedly, security for when parents are gone); and (iii) person-directed planning | 1 | [27] |

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| 23. | Intersectionality - Cultural | “We see it very much as our community is a collective community. Supported decision-making for a person that has a disability or doesn’t have a disability is often the same. It’s always a group consensus about what can and can’t be done particularly in more rural, regional and remote communities…. And because we have a very well-built understanding of our governance structure and our authority structures, we know who needs to be part of the decision-making process. We have been doing circles of support long before it became known as circles of support. … And literally we do sit and decide who is going to make the decision and who needs to be involved in that decision-making process. And it doesn’t mean that we’re taking away the autonomy of the individual. The individual is still centred but the decision is collectively made about what’s best for that person. And literally it is our way of doing the Circle of Support whether you have a disability or not… We hear what they want to — we hear what they say. We know what they mean through either their behaviour, their words and then we’ll sit down and have a discussion about what’s the best way to support that individual to do what they need to be able to do” (quote from a First Nations person). | 1 | [4] | | 24. | Opportunities for community participation | “Circle members universally said they produced major social, psychological and practical outcomes for the individual and their family. One described the Circle’s impact as ‘massive’ for a person with complex needs who now knew that ‘people are looking out for her’. She could now take part in activities in the same way as people without disabilities and was much more integrated in the local community” (Author’s quote on behalf of carer). | 1 | [19] | | 25. | Sounding board for PWD | “So, it’s having that Circle of Support there, so a bit of body armour to hear what their ideals are and what they’d like to succeed, and how can they do it, and, of course, as we all know it’s all about who you know” (Development worker and circles of support coordinator). | 1 | [20] | | 26. | Strengths based perspective | “By creating a circle for Jonathan we were able to plan a smooth integration for him, using techniques which focused on his long-term desires and dreams rather than his perceived limitations or problems” (Parent of a young adult with disability). | 1 | [35] |

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| 27. | Supported decision making for PWD | “Good support like I get has helped me to learn. I go to them and I have people to ask questions. Other people’s thoughts and ideas help me decide what to do” (PwD). | 1 | [21] | | 28. | Sounding board for PWD | “You know when you get a group of smart people together who’ve got different life experience, they are very good at brainstorming…. They clarified issues, it clarified the fact that we really needed to sort out our legal things…. Having to talk about things in front of everybody provided motivation to move forward on issues like legals for the family …. It gave me courage, every couple of months I have to fess up to what I’ve done or I haven’t done, you know It does create that little bit of pressure to get moving, to continue to move forward” (Mother, circle member). | 1 | [20] | | 29. | Facilitator can help find an informal support network | “I literally stalked Fred for the majority of his activities …..So I went along and I sat next to him and I would ask the staff who talk to him on a daily basis… which staff talk to him often, which residents or which people here talk to him?” (Program coordinator). | 1 | [34] | | 30. | Family members feel supported | “And often their families are fatigued, they’re fatigued through a life of caring, and you know, they’re just not going to be able to do that lobbying in the same way. (Bigby, forthcoming)” (Author’s quote). | 1 | [22] | | 31. | Benefit of CoSAM vs guardianship | “Since March 2020, Victorian legislation requires guardians to make decisions based on the will, preference and rights of people with disabilities, rather than best interests, but this is not the case in all Australian states. Regardless, whatever the regime, the imposition of guardianship does mean the removal of decision-making rights” (Author’s quote). | 1 | [22] | | 32. | Lack of supported decision making in absence of CoSAM | “27 of the 28 participants with intellectual disabilities reported that a family member who supported them largely determined what was included in their plans, and at times overrode, failed to listen to or silenced the adult’s own perspective” (Author’s quote). | 1 | [22] | | 33. | NDIS does not fund independent advocacy | “_..thousands of people with a disability who are living in disability accommodation, who are unable to self-advocate and do not have family support. The NDIS has a fundamental weakness, in that it does not fund independent advocacy for people who need it. Without advocacy, our most vulnerable Australians are unlikely to be any better off under the NDIS” (Author’s quote). | 1 | [22] |

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| 34. | Formal CoS may not be required in all cases | “…this idea of circles has changed a little bit… maybe you do have to be a little more structured and formal as to what we’re trying to do. But I keep thinking, “Sarah’s got [contact with neighbourhood kids] you know?” And, “does it spoil it to sorta sit down and analyse it and talk about it?” (Mother of child with disability). | 1 | [17] | | 35. | Safeguarding concerns in absence of CoSAM or guardian | “The provisions have also been criticised as a form of “guardianship light”, which lack the due process or protections afforded by the appointment of an actual guardian” (Author). | 1 | [22] | | 36. | No formal options in NDIS to assist people with plans | “The absence of a formal scheme for supported decision-making meant participants relied on their own informal network, or on existing service providers, for assistance with decision making around planning and during the initial stages of plan implementation” (Author’s quote). | 1 | [22] | | 37. | Benefits for children and young people. | “An evaluation of the Microboards for Children (MB4C) model found that families using the model were better equipped than previously to advocate for systemic inclusion of their child or young person” (Author’s quote).
“Families with a Microboard or those using MBC4 principles and processes reported their child or young person’s choice and control in their life was enhanced.” (Author’s quote). | 1 | [17] |

Table A3. Risks, challenges or harms associated with Circles of Support.

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| 2. | Focus on parental decision-making | “However, it has also been found that some circles of support are established to support parental decision-making rather than that of the person with disability” (Author’s quote). | 2 | [4, 27] | | 3. | Activities with PwD are not carried out | “I knew things were good at school because a lot of kids knew him and they all talked to him and all that…But at home like the whole summer no one called on him, no one phoned, no one came to the door, you know, or, or anything! Like I know they all have their different and busy with this and they were away and everything else, but it, like so far it hadn’t affected his home life…” (Parent of child with disability). | 1 | [28] | | 4. | Difficulty of knowing how much a PwD is legally responsible for a decision when they have significant vulnerabilities | “A difficult question is the apportionment of legal responsibility for decisions made through supported decision-making. Responses are to some degree linked to the model of supported decision-making adopted, and the role that supporters are expected to play. One approach is to say that the decision is that of the person, and that therefore that person bears the full responsibility for the decision: critics argue that this approach can lead to troubling moral outcomes where some persons with significant levels of vulnerability may be liable to suffer substantial legal consequences despite not having understood the risks associated with the decision. Another approach is to emphasise the interdependent nature of decisions made through a supported decision-making approach” (Law Commission of Ontario). | 1 | [27] | | 5. | Formal CoS may not be required in all cases | …this idea of circles has changed a little bit…maybe you do have to be a little more structured and formal as to what we’re trying to do. But I keep thinking, “Sarah’s got [contact with neighbourhood kids] you know?” And, “does it spoil it to sorta sit down and analyse it and talk about it?” | 1 | [28] | | 6. | Lack of clarity around who CoS benefit | “The grey literature on Circles of Support contains anecdotal stories of success but does not adequately consider the specific groups of people whom programs target” (Author’s quote). | 1 | [34] |

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| 7. | Lack of consent of PwD to CoSAM | “Whatever the impetus, the supported person might have varying levels of ability to agree or consent to the network’s creation. One informant, a facilitator, said that consent is essential, as there is risk inherent in opening one’s most private details to group discussion; while this can provide support, it also brings a measure of accountability for decisions because the members are now ’watching” (Facilitator). | 1 | [27] | | 8. | Not sustainable. | “We’ve actually shown that a circle still has relevance for someone who has no family in their life, that you can actually start to provide some of these things. It’s not a case of ‘who will care about me when I’m gone and what will I be doing when they’re gone?’, it’s actually around ‘what can I do to have something now, that resembles a life?’ that we’d like for someone to have, and be worried about when it’s absent… Did we achieve a sustainable Circle of Support for Colin? No. But does he have a new pair of shoes and doesn’t have wet feet, and did someone take an active interest in his life? Absolutely” (CEO, Inclusion Melbourne). | 1 | [20] | | 9. | Members of CoS bear some ethical responsibility for the decisions made | “If decision-making is an interdependent process and if a person has a support network assisting them to make decisions, it can be argued that the members of the support network should bear at least some ethical responsibility for the decisions made, unless they formally distance themselves from the decision. The question of legal responsibility arises if decisions with legal ramifications are being made, for example decisions involving a financial contract, decisions requiring formal consent or decisions that may result in a person having a civil action brought against them. An alternative form of supported decision-making is to establish the support network as an Incorporated Association. Under this arrangement, all the members of the network take responsibility” (Office for Public Advocate for Victoria). | 1 | [27] | | 10. | Opportunities for financial or other abuse even with supported | “One of the primary worries, even for those advocating supported decision-making, is the potential for coercion or other inappropriate influence by a representative or supporter. Exploitation and abuse certainly occur in guardianship context (although it is unclear how frequently), and supported decision-making arrangements create new opportunities for abuse.

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| | decision-making models | Indeed, when we turn to more informal arrangements such as supported decision making, which may occur in private and with less accountability, the potential for financial or other abuse likely increases” (Author’s quote). | | | | 11. | Power CoS can have to make decisions | “Where the individual had capacity, his/her views were of prime importance, but where someone could not speak for him/herself, the Circle had ’huge power’ to provide solutions” (Author’s quote). | 1 | [19] | | 12. | PwD may not feel comfortable in groups | “an independent facilitator in Ontario said she is cautious about recommending “circles” in any defined sense, as these often don’t work, either for the supported person or for members. She said that expecting a group of people to come together on a regular basis is often unrealistic, and many supported persons don’t feel comfortable in groups in any event” (Author’s interpretation of facilitator). | 1 | [27] | | 13. | Unrealistic expectations of people to commit to CoS | “an independent facilitator in Ontario said she is cautious about recommending “circles” in any defined sense, as these often don’t work, either for the supported person or for members. She said that expecting a group of people to come together on a regular basis is often unrealistic, and many supported persons don’t feel comfortable in groups in any event” (Author’s quote based on facilitator). | 1 | [27] | | 14. | Expenses expected to be paid for by coordinator | “Program 2 experienced a particular challenge in this respect if the person had no existing informal network members and when potential circle members met venues such as cafés, they expected associated costs would be covered either by the program or by the person. Costs such as these were not accounted for in the program budget, which often resulted in the coordinator paying them from her own pocket”. (Author’s quote based on facilitator). | 1 | [23] |

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Table A4. Barriers to setting up or maintaining a Circle of Support.

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| Practical and emotional sustainability | 2 | “Several informants talked about the challenges of keeping even informal groups of family and friends consistently involved.” (Author’s quote from informants [on CoSAM]) | [27, 28] | | Upskilling requirements | 2 | “We would meet at 3:30 after a long day, a social worker would only want to talk about things that I wasn’t doing well so we had to talk about how that is not what a Circle does.” (PwD) | [20, 21] | | Prioritising support above cultivating personal relationships | 2 | “If a person is not known and cared for then they are usually ‘done for.’ Service providers need to learn that welcoming people into the lives of the individuals they serve is as important as administering their medication and clipping their toenails” (Carer of PwD). | [38] | | Ineffective coordination and facilitation | 2 | “84% (n=15) of times a supporter was found not to respond to the person’s expression of preference they were supporting, it was because they “had not acknowledged or noticed the person’s expression of preference” (Author). | [20, 28] | | Providers will only work with PwD who have family | 1 | “Program 1 was part of an organisation with a strong mission to support families and this was reflected in the program logic. The program (delivered by providers of CoSAM) focused on supporting families to ensure continuity of informal support across the lifespan, with the rationale that if the family were well supported the person with disability would benefit.” (Author) | [23] | | Support varies across developmental stages | 1 | “My daughter is 22. We had a lot of support in school, but when she graduated, I realised that adult services provided a tenth of that. Before I heard about networks, I wasn’t aware that my child was so isolated. But she is. It has been a real eye opener for me. I’ve seen that government and services won’t be there and won’t care for her as an individual” (Carer of PwD). | [38] |

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| Carers’ reluctance to expand support network | 1 | “When new people begin to play a significant roles in the lives of a vulnerable family member there can be fear of giving up power to the network. It is difficult to change or relinquish power and believe that others will care as much and do as well as you. It is even more difficult to consider that they might do better than you.” (Author) | [38] | | Difficulty securing effective facilitation | 1 | “Some networks involved in this study had four facilitators in less than two years. Because most facilitators work part-time, the relative small number of working hours per month often attracts students. Their natural transience as well as the lack of lived experience which would provide a greater sophistication of understanding, presents an ongoing difficulty” (Author). | [38] | | Risk aversion | 1 | “Service is concerned with risk, liability and accountability. I don’t want to talk about safety in the way that services do. If something is going to happen then I want it to happen in the community rather than having my son shut away. I want relational accountability” (Carer of PwD). | [38] |

Table A5. Enablers to setting up and maintain a Circle of Support.

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| | | ‘great.’ When asked why this one was different, he said, ‘This is the first meeting where people listened to me” (Parent of PwD). | | | Effective facilitation | 4 | “Helping develop a positive perception of the person’s ability to communicate and participate in decision making, manage conflict between supporters and provide a leadership role in “pulling it all together” (Supporter in Circle of Support). | [8, 21, 24, 28] | | Stong social network | 4 | “We did a social inventory of our life and that of our son’s. We had a whole whack of names. It was overwhelming. If we had invited everyone, we’d have had to rent a hall.” (Parent of PwD) | [20, 21, 28, 38] | | Relationship among members | 3 | “You have a circle meeting, you find out that every single person in that circle only knows the tiniest little miniscule thing about that person, so you spend the next four or five months just pretty much socialising.” (Bigby and Araten-Bergman 2018) | [20, 24, 38] |

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Collaboration 2 “You can’t make life-altering [24, 27] decisions if you’re separated, if you have day service and home. You can’t make life-altering decisions if you are only looking at one perspective. So that’s why the collaborative approach, because holistically to make up one person we have to take into account what happens during the day as well as what happens at home.” (Supporter in Circle of Support)

Flexibility among staff 1 “Staff emphasised their flexibility [23] in arranging their time according to the requests of people with intellectual disabilities, families and circle members” (Author’s interpretation of facilitators)

                                                                                  “staff conveyed an extremely high
                                                      commitment to the program and
                                                                     willingness to work beyond the
                                                            boundaries of their budgeted time
                                                     and role to promote circle

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activities” (Author’s interpretation of facilitators)

Flexibility among circle members 1 “Many activities associated with [23] Circles of Support rely on the availability of family or circle members and happen after office hours.” (author’s interpretation of family members)

Communication skills 1 “It’s those people skills, whoever sits [20] in a Circle of Support needs to have very good listening skills, you know what’s said, what isn’t said, really strong observation skills, very good communication skills and ability to be able to negotiate …. but it’s that social and community framework really, ability to be nimble and a bit flexible when needed. So sometimes you think, you know you’re heading in one direction and you’re going to have to shift a little bit somewhere else and also that you don’t have ownership over it and you’re not there to fix anyone just to help.”

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Effective coordination 1 “[The facilitator] also observes new [27] networks closely for the first six months to a year to ensure that it is still working well for the person.”

Incentivise member participation 1 “The [yearbook] statement is [28] accompanied by a picture of Jen’s circle and the teacher. These examples show how helpfulness was seen as a desirable trait for prospective circle members.” (Author)

Table A6. Benefits associated with setting up and maintaining a Microboard.

37] Structuring relationships | “Emphasises the critical importance of social networks to “health and social outcomes”. 1 [27] into a support network Focusing on the ‘security’ side of the equation, the authors of a guide to Aroha entities in Ontario [similar to microboards] describe friends as

talking about their support workers in front of them, or if there’s a team member present that’s that’s really risky for people to do that” (Provider interview).

4. Assumption that “Informants recognised that some people will not be able to ’choose (or terminate) a 1 [27] everyone would network in the traditional sense, but took the position that people of all levels of abilities benefit from CoSAM should benefit from personal support network arrangements” (Author’s interpretation of informants quote).

5. Difficulty of knowing “A difficult question is the apportionment of legal responsibility for decisions made through 1 [27] how much a PwD is supported decision-making. Responses are to some degree linked to the model of legally responsible for supported decision-making adopted, and the role that supporters are expected to play. a decision when they One approach is to say that the decision is that of the person, and that therefore that have significant person bears the full responsibility for the decision: critics argue that this approach can vulnerabilities lead to troubling moral outcomes where some persons with significant levels of vulnerability may be liable to suffer substantial legal consequences despite not having understood the risks associated with the decision. Another approach is to emphasise the interdependent nature of decisions made through a supported decision-making approach” (Law Commission in Ontario).

6. Negative influence of “One person, a parent, said that the supported person must choose members, and 1 [27] family members cautioned that family members must be very careful not to impose their preferences about choosing members network membership. She emphasised that the focus person may have views that diverge from those of family members, and they may specifically want to ensure the presence of non-family members” (Author’s interpretation of parent’s interview)

7. Potential opportunities “One of the primary worries, even for those advocating supported decision-making, is the 1 [27] for financial or other potential for coercion or other inappropriate influence by a representative or supporter. abuse even with Exploitation and abuse certainly occur in guardianship context (although it is unclear how

supported decision frequently), and supported decision-making arrangements create new opportunities for making models abuse. Indeed, when we turn to more informal arrangements such as supported decision making, which may occur in private and with less accountability, the potential for financial or other abuse likely increases. However, data do not seem available on the incidence of such abuse in the supported decision-making context.” (Law review by Kohn 2013).

8. Not considering other | “Succession planning is a much contested goal (paternalistically assuming that this is 1 [4] models of necessary rather than a product of the person’s will and preferences) and in any event it safeguarding, can better be promoted in other ways.” “The advantages conferred by having more than succession planning one supporter (that there are several watchful eyes to help protect against abuse) can be and supportive- obtained in several more informal ways, short of setting up Microboards” (Author’s quote decision making with reference)

9. Unclear for 3rd parties | “Concerns have been raised that supported decision-making, relying as it does on multiple | 1 [27] who is legal persons, provides insufficient clarity for third parties, who must be able to easily pinpoint responsible for those persons who are authorised to enter into legally binding transactions” (Author’s decisions made quote).

10. Image of corporation | “and the symbolism of corporate-faced ‘personalisation’ of support is, to say the least, 1 [4] somewhat jarring” (Author’s quote, with reference)

Table A8. Enablers for setting up and maintaining a Microboard

| 1. Facilitator support needed | “Almost all of the boards that I am aware of have reached that point….within 6 months to a year where things are getting real tense, people are starting to feel uncomforatable around each other, and a couple of people want to punch each other out. And they sort of need some help, and invariably that’s where I will hear from them again” (Facilitator) | 2 | [27] [29] | | 2. PwD choose to set up Microboard | “She explained that before setting up a new network, she takes the focus person to another person’s support network to help them understand what a network entails.” | 1 | [27] | | 3. Provider’s support setting up Microboard | “We could not do this without Vela [Canada]. I think that’s critical to mention. I had no idea how to form a non-profit society or put a budget together for funding. I had a vision, a dream of what a good life would look like for [the person being supported], and I could not have done this without [facilitating organisation]’s staff walking beside us every step of the way in the early stages.” (Mother) | 1 | [36] | | 4. Someone close to PwD to help set up Microboard | “I would have taken the initiative but it would have been a lot later (microboards). I would never believe it now that Lisa got it going. ….She was pushing for the microboard and getting married…” (PwD, referring to future wife who arranged MB) | 1 | [29] | | 5. Microboard plays a similar role as a provider | The Wetherows (who innovated the first Microboards in Manitoba) have suggested that the appropriate relationship between a Microboard and government is one in which “[t]he Microboard has the same standing as a provider agency – it is a provider agency, for one person” | 1 | [27] | | 6. Working with agencies to receive funding for Microboard | Among Ontario networks that do receive and manage funding, they are apparently doing so as a result of creative arrangements with transfer payment agencies supportive of their objectives. | 1 | [27] |

| 7. Have a legal framework and consitituion | “Well, it’s good thing about having the legal structure in place. So that’s reviewed every year as a matter of course at the annual general meeting. So it’s understood that that’s a natural step on step off point for people, even if they just want to leave or take a break” (CEO, Microboads Australia) | 1 | Provider interview |

Table A9 Barriers for setting up and maintaining a Microboard

| 4. Administrative challenges | “Families will often need to hire a lawyer, and will be faced with substantial work relating to meetings, bookkeeping, and government filings, among other issues. For already over-burdened families, this might act as a deterrent.” (Author) | 1 | [27] | | 5. Need for NDIS funding | “Compounding the absence of a formal supported decision-making scheme, current NDIS policy does not allow funding of supported decision-making in a participant’s package, other than one off funding to establish a microboard (see discussion at Sections 5.3 and 8.3.1).” (Author) | 1 | [4] | | 6. Requiring a minimum of 5 to 6 members | “could be where micro board needed – legal entity – but needs to be wound up if less than 5 or 6 people– needs a commitment”. (Family–disability) | 1 | [4] | | 7. Funding eligibility | The informant interviews indicate that there is confusion and a lack of information about whether incorporated networks are eligible to receive funds in Ontario. Several informants said there is no reason to incorporate a support network in Ontario because the government will not allow it to receive funding. | 1 | [27] | | 8. Insufficient funding |

| payment agency (while still having effective choice in the services provided due to an arrangement with the agency. In general, informants wanted a range of options that could be adapted to individuals’ particular needs, not a prescriptive mode

| greater accountability | contested goal (paternalistically assuming that this is necessary rather than a product of the person’s will and preferences) and in any event it can better be promoted in other ways. | | | | 15. A Microboard is not suitable for everyone |

11. References

12. Department of Health – Victoria. Person centred practice. 2015; Available from: https://www.health.vic.gov.au/patient-care/person-centred-practice.

13. Association, A.B. Supported Decision-Making. Available from: https://www.americanbar.org/groups/law aging/resources/guardianship law practice/support ed-decision-making/.

14. Alston, B., Towards supported decision-making: Article 12 of the convention on the rights of persons with disabilities and guardianship law reform. Law in Context, 2017. 35(2): p. 21-43.

15. Bigby, C., et al., Diversity, dignity, equity and best practice: a framework for supported decision-making., A. Royal Commission into Violence, Neglect and Exploitation of People with Disability, Editor. 2023: Australia. p. 434.

16. NDIS, NDIS Supported Decision Making Policy. 2023. p. 34.

17. Australia, C.o., Working together to deliver the NDIS. Independent Review into the National Disability Insurance Scheme. 2023, Australian Federal Government, Department of the Prime Minister and Cabinet: Australia.

18. van Asselt‐Goverts, A., P. Embregts, and A. Hendriks, Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life. Journal of Intellectual Disability Research, 2015. 59(5): p. 450-461.

19. Despott, N., et al., Circles of Support and Microboards: Person-centred, efficient models for capacity building, supported decision making, and enfranchisement., in A Submission to the NDIS Review Committee, August 2023. 2023, Circles of Support and Microboard.org.au: Australia. p. 1-8.

20. Shea, J. A definition of microboards. . 2001; Available from: http://www.dimagine.com/page20.htm7.

21. Browning, M., C. Bigby, and J. Douglas, Supported decision making: Understanding how its conceptual link to legal capacity is influencing the development of practice. Research and Practice in Intellectual and Developmental Disabilities, 2014. 1(1): p. 34-45.

22. Commission, A.L.R. Supported and substituted decision-making. 2014; Available from: https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws- dp-81/2-conceptual-landscape-the-context-for-reform/supported-and-substituted-decision- making/.

23. Jay, L., Circles of Support and Microboards Review: Building Community Networks with Belonging Matters, Sotica, Editor. 2018, Belonging Matters: Melbourne, Australia. p. 31.

24. Laurens, J., et al., Good practice in supported decision-making for people with disability. 2021.

25. Office of the Public Advocate (Vic), Walk with me, talk with me: A practice guide for OPA staff. 2018.

26. Stainton, T., et al., Microboards™, social capital and quality of life. 2020, University of British Columbia, Canadian Institute for Inclusion and Citizenship.

27. Taylor, S., et al., The role of microboards in enhancing quality of life for children with intellectual disability and their families. Journal of Policy and Practice in Intellectual Disabilities, 2023.

28. Taylor, S., et al., Microboards for children project. 2022.

29. COSAM.org, Research and evaluation summary Academic Research and Professional Evaluation of Circles of Support & Microboards – COSAM. 2023. p. 19.

30. Wistow, G., et al., Circles of support and personalization: Exploring the economic case. Journal of Intellectual Disabilities, 2016. 20(2): p. 194-207.

31. Bigby, C. and T. Araten-Bergman, Models for forming and supporting circles of support for people with intellectual disabilities. . 2018, Living with Disability Research Centre, La Trobe University.

32. Lockman Turner, E., et al., Circles of support and self-direction: An interview highlighting a journey of friendship and managing services. Inclusive Practices, 2022. 1(2): p. 75-78.

22. Bigby, C., Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together. Journal of Intellectual and Developmental Disability, 2020. 45(4): p. 309-319.
23. Araten-Bergman, T. and C. Bigby, Forming and supporting circles of support for people with intellectual disabilities—A comparative case analysis. Journal of Intellectual and Developmental Disability, 2022. 47(2): p. 177-189.
24. Watson, J., The right to supported decision-making for people rarely heard. 2016, Deakin University.
25. Health, O.D.M. Circles Of Connection. 2023; Available from: https://www.onedoor.org.au/news-updates/research/circles-of-connection-project-findings.
26. Fong, V., E. Gardiner, and G. Iarocci, Satisfaction with informal supports predicts resilience in families of children with autism spectrum disorder. Autism, 2021. 25(2): p. 452-463.
27. Nunnelley, S., Personal support networks in practice and theory: asesssing the implication for supported decision-making law. 2015: Commissioned by the Law Commission of Ontario.
28. Gold, D., Attempts to create friendship in the lives of students with disabilities: The case of ‘circles of friends’. 1996, ProQuest Information & Learning. p. 0638-0638.
29. Malette, P., Lifestyle perspectives of person’s with disability in a person-centered support program, in Department of Educational Psychology and Special Education. 1996, University of British Columbia: British Columbia. p. 294.
30. Kohn, N.A., J.A. Blumenthal, and A.T. Campbell, Supported decision-making: A viable alternative to guardianship. Penn St. L. Rev., 2012. 117: p. 1111.
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33. Cocks, E., Review of the quality achievements by five Microboard organisations in Australia. , N.R.C.f.C.O.S.A.M.C.a.I. Melbourne, Editor. 2018. p. 26.
34. Bigby, C., Programs and Practices to Support Community Participation of People with Intellectual Disabilities, in Handbook of Social Inclusion: Research and Practices in Health and Social Sciences, P. Liamputtong, Editor. 2022, Springer International Publishing: Cham. p. 695-727.
35. Jay, N., The Circles Network CREDO Project. Support for Learning, 2003. 18(1): p. 24-28.
36. Morris, R., et al., The impact of microboards on social and community inclusion of adults with intellectual and developmental disabilities: “To not just exist, but to truly live”. Research and Practice in Intellectual and Developmental Disabilities, 2024: p. 1-11.
37. Nuri, R.P., et al., The Limits and Contributions of Formal Support: Service Providers’ Perspectives on Balancing Formal and Natural Support for People with Disabilities and their Families in Canada. Journal of Developmental and Physical Disabilities, 2024: p. 1-28.
38. Rother, N., Reaching Out. A portrait of Social Network Facilitation in Canada. 2012, PLAN Institute for Citizenship and Disability.
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