New Avenues of Providing Effective Care: the Role of Microboards

‘New Avenues of Providing Effective Care: the Role of Microboards’

DR DAVID PLATER, LUKAS PRICE, ESTHER RICHARDS AND DR MARK GIANCASPRO1

In January, 2021, the independent South Australian Law Reform Institute (SALRI), based at the University of Adelaide Law School, released its Report into the role and operation of Enduring Powers of Attorney (EPAs) under the Powers of Attorney and Agency Act 1984 (SA) (POA Act) in South Australia.2 SALRI’s report also examined the role of ‘microboards’ in providing flexible and effective long-term care to persons with disability, and raised some of the legal issues and implications that exist under present law and practice.3 Significantly, the concept of microboards was not raised by SALRI in its consultation, but rather by members of the community, health and disability sectors. The concept was raised in relation to dissatisfaction with existing options – such as powers of attorney (POAs), guardianship and administration orders and the Public Trustee. The extensive reliance upon perceived unregulated commercial care and the role of Government care was also of concern. It was suggested that, drawing on recent developments in Canada4 and Western Australia, SALRI should look further at the role and operation of microboards to determine their feasibility as a viable alternative to existing support strategies.

A microboard is a relatively new concept in Australia. It involves a small group of interested individuals who gather around a person with special needs (whether elderly and/or with a disability) to support them throughout their lives.5 Generally, these groups take the form of an incorporated legal entity and can serve as a vehicle for supported decisionmaking in a number of areas, including financial management,6 health care, treatment, safeguarding and governance. In its operation, a microboard seeks to represent best practice in disability support by moving away from the concept of substitute decision-making – where a person or persons are appointed to make decisions for someone else. Substitute decision-making can impact a person’s sense of autonomy, self-worth and wellbeing.7 Microboards have the advantage of exercising decisions relating to a range of personal issues, which allows the model a certain degree of flexibility. A microboard could theoretically exercise a similar authority to that utilised under POAs, Advance Care Directives or guardianship orders, and has the potential to render these otiose. The membership of a microboard may change over time and members may be selected according to their familial, personal, or professional connections or expertise.

SALRI was told that microboards appear to offer an encouraging alternative to existing substitute decision-making mechanisms, and this relatively new approach has the potential to act as a longterm and sustainable safeguard in the lives of vulnerable people. However, significant questions remain as to the role and effect of present law and practice to accommodate and best provide for microboards. The intersection of the role and operation of a microboard with the National Disability Insurance Scheme (NDIS) in Australia8 remains unclear.9 SALRI noted that, while the ability of microboards to provide for the long-term care of persons with disability has apparent merit, further discussion was beyond the scope of its EPA reference. SALRI recommended undertaking a future reference in close consultation with interested parties to examine the role, operation, and implications of microboards.10

CONTEXT

The effective care of persons with disability or cognitive impairment and the prevention of abuse are the subject of extensive scrutiny and concern.11 There are various issues and perceived omissions in the provision of long-term care or support to an individual with disability through some of the usual means, such as a POA, guardianship or administration orders, residential care facility, commercial care or the Public Trustee. These concerns are compounded by the profound change in practice from substitute to supported decision-making models and the shift to tailored care in the community (as demonstrated by the NDIS). The suggestion of a microboard as a new flexible model to provide effective tailored care with a focus on supported decisionmaking has emerged.

The absence of relationships and support networks outside of a paid individual(s) was raised in SALRI’s EPA consultation as a source of community concern.12 The presence of non-family relationships is seen as an essential safeguard, particularly when parents are no longer around or able to take an active role in providing care. A microboard seeks to formalise relationships into a legal structure with accountability mechanisms, ensuring that safeguards exist beyond the lifespan of the primary carers.

Law and social reform in the area of disability since the 1970s has emphasised the shift from a medical model of disability to a social model of disability.13 An increased level of priority has been given to deinstitutionalisation, self-autonomy and the right of individuals to enjoy a suitable quality of life.14 The United Nations Convention on the Rights of People with Disabilities15 emphasises that these are human rights, and calls for the equal representation of people with disabilities within the law.16 This has led to an increased questioning of traditional ‘paternalistic’ substitute decision-making models (where a person, body or Government makes decisions for a person with a disability) and increasingly a shift to the concept of supported decision-making.17 Supported decision-making seeks to support people with impaired decision-making functions to make and implement informed decisions.18 In many ways, this accords with much of the ‘normal’ decision-making process, with consultation and input from family, friends and relevant professionals.19 Supported decision-making takes various practical forms, including making information accessible, giving advice about different pathways, taking steps to recognise the person’s actual preferences, and assisting

the person in communicating their wishes to others.20 It involves the principal’s permission and engagement in the process, allowing them to retain autonomy whilst being provided with resources to make a decision. This can apply to financial, medical and/or personal decisions.21

There is substantial research on the broader benefits of supported decisionmaking in improving the quality of life for people with a disability.22 The introduction of the NDIS reinforces this focus on supported decision-making as the scheme is an individualised program focusing on tailored support based on the needs and views of the person.

Microboards can facilitate supported decision-making as they seek to place a supportive network around the person with impaired decision-making capacity to assist their realisation of ‘dreams, hopes and visions’ and to clarify their needs.23 Microboards are based on a committed relationship with the subject person and promote a consultative and collaborative approach. One benefit of these boards is the flexibility to tailor the focus and direction for the needs of the principal.

The model of an incorporated microboard was used originally in Canada24 and is now being adopted in Western Australia. The first large-scale microboard development and implementation took place in British Columbia, and as of 2015 the province had over 900 microboards in operation, including all but one of the original pilot boards established in the early 1990s.25 There are a number of microboards presently established, or being established in Western Australia. There are also current efforts to establish a microboard in South Australia – however there are still unresolved legal issues and implications in that regard.

There are a number of benefits to a microboard which can be obtained through the incorporation process, as opposed to relying on informal arrangements. The key element is that an incorporated body, with its own perpetual legal personality, is a strong force in keeping members attached and connected to the subject person. This provides an additional level of legitimacy and a binding legal force behind the desired relationships. Members are also held accountable through meetings, and in many cases must replace themselves - further improving the prospects of longevity.

An incorporated body provides a structural framework for microboard members, allowing for a separation of personal liability. There are also safeguards in relation to conflicts of interest, fraudulent behaviour, personal enrichment and oppressive behaviour. A microboard’s independent legal personality allows it to transact, enter into contracts, employ people or hold property – with such issues becoming increasingly pertinent in the absence of primary caregivers or guardians. The incorporated structure, whilst not always perfect in implementation, provides a reliable, sustainable and enforceable method of disability care and support. Mandatory requirements under incorporation legislation for external financial auditing and reporting are also safeguards which informal care networks lack.

A microboard in South Australia could take the form of an association incorporated under the Associations Incorporation Act 1985 (SA) (Incorporation Act). SALRI raised that, although the Incorporation Act can be potentially used for microboards, it is not an ideal vehicle. The Incorporation Act was not designed with disability support in mind but was rather introduced with a strong emphasis on accountability in associations26 (such as sport or social clubs).27 If incorporated under the Incorporation Act, microboards are not afforded any special legal recognition beyond that ordinarily given to any incorporated association. As a microboard deals with the livelihood of a vulnerable member of society, questions arise about the need for an adequate definition to differentiate it from an ordinary association.

SALRI understands that at least one microboard is presently seeking to navigate the incorporation process in South Australia and a test case is before the South Australian Civil and Administrative Appeals Tribunal (SACAT) as to whether the Incorporation Act allows for the incorporation of a microboard in South Australia.

Irrespective of the status of incorporation or the result of the case before SACAT, it is unclear if the Incorporation Act is the best vehicle to support, facilitate and regulate microboards in the long term. At present, much regulation would have to be done by the microboards themselves through the use of rules or constitutions, with no minimum standards being mandated. When combined with limited regulation on eligibility for membership, duties held by members, or safeguards for the person living with a disability, this suggests that reform is needed to ensure microboards can be best utilised by the community. It has been suggested to SALRI that the use of the incorporated association to provide for the role and operation of microboards is akin to ‘trying to put a square peg in a round hole’.

There is a notable lack of empirical evidence as to the long-term effectiveness of microboards, both in Australia and internationally.28 Whilst limited anecdotal evidence suggests that a microboard can serve as an effective long-term safeguard against financial and other abuse and can improve the quality of life for its subject person, there is still a lack of firm research.29 It is also unclear what demand exists within the community and whether there is significant unmet demand a microboard could meet. There does however appear to be strong movement within the disability sector to seek out new best-practice means to support those living with disability. The possible role of a microboard in this regard has also

been recently discussed before the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

The role and operation of microboards is a relatively new area in Australia and is clearly of interest to the community, health and disability sectors. The fact that a microboard can cover health, lifestyle and financial decisions is significant. A microboard is not a universal solution, particularly in circumstances where a person lacks sufficient social capital to establish a network in the first place. This does not negate the fact that in many situations the concept may offer a promising, sustainable and contemporary approach to disability support.

There is a lack of empirical research in this emerging area and with respect to the issue of whether present law and practice (notably the use of the incorporated association structure under the Incorporation Act) enables the establishment and effective operation of a microboard. It is also unclear whether the Incorporation Act could or should be amended to better cater for microboards or whether a new specific legislative and practical framework may be preferable. This is an emerging area and one that should not be overlooked by either lawyers who practice in this area or for future law reform. SALRI is anxious to examine in more detail this topical concept. B

Endnotes 1 Dr David Plater is the Deputy Director of the

South Australian Law Reform Institute. Lukas Price and Esther Richards were students in the 2020 Law

Reform class whose research examined the role of microboards. Dr Mark ‘Matt’ Giancaspro is a

Lecturer at the Adelaide University Law School and regular contributor to SALRI’s work. 2 Sylvia Villios, David Plater, Gabrielle Golding,

Olga Pandos, Bernadette Richards, Anita

Brunacci, Natalie Ayoub and Holly Nicholls,

Valuable Instrument or the Single Most Abused Legal

Document in our Judicial System? A Review of the Role and Operation of Enduring Powers of Attorney in South

Australia (South Australian Law Reform Institute,

Adelaide, 2020). 3 Ibid 404-411. 4 See Carolyn Lemon and James Lemon

‘Community-Based Cooperative Ventures for

Adults with Intellectual Disabilities’ (2003) 47(4)

Canadian Geographer 414. 5 Leighton Jay and Michael Schaper, ‘Microboards:

What Are They and How Do They Work?’ (2012) 26(4) Training and Management Development

Methods 4.01. 6 Not all microboards directly manage a person’s funding, but many do. See Tim Stainton,

‘Supported Decision Making in Canada: Principles,

Policy and Practice’ (2016) 3(1) Research and Practice in Intellectual and Developmental Disabilities 1, 8. 7 Michelle Browning, Christine Bigby and

Jacinta Douglas, ‘Supported Decision Making:

Understanding How its Conceptual Link to

Legal Capacity is Influencing the Development of Practice’ (2014) 1(1) Research and Practice in

Intellectual and Development Disabilities 34-45, 38;

Matt Jameson, Tim Riesen, Shamby Polychronis,

Barbara Trader, Susan Mizner, Jonathan Martinis and Dohn Hoyle, ‘Guardianship and the potential of supported decision making with individuals with disabilities’ (2015) 40(1) Research and Practice for Persons with Severe Disabilities 36-51, 36. 8 The intersection of a microboard with NDIS is complex and unclear, but SALRI understands that funding may be available under NDIS to set up a microboard. See also Christine Bigby et al,

‘Delivering Decision Making Support to People with Cognitive Disability: What has Been Learned from Pilot Programs in Australia from 2010 to 2015’ (2017) 52(3) Australian Journal of Social Issues 222, 224. 9 See also Bloch Holdings Corporation v Ministry of Children, Community and Social Services [2019]

ONSC 4227. 10 Sylvia Villios, David Plater, Gabrielle Golding,

Olga Pandos, Bernadette Richards, Anita

Brunacci, Natalie Ayoub and Holly Nicholls,

Valuable Instrument or the Single Most Abused Legal

Document in our Judicial System? A Review of the Role and Operation of Enduring Powers of Attorney in South

Australia (South Australian Law Reform Institute,

Adelaide, 2020) Rec 118. 11 See generally Royal Commission into Violence,

Abuse, Neglect and Exploitation of People with Disability, Interim Report (Report, October 2020); Family and Community Development

Committee, Parliament of Victoria, Inquiry into Abuse in Disability Services (Final Report,

Parliamentary Paper No 167, May 2016) 12 Isabel Dayman, ‘Ann Marie Smith’s Death

Shocked the Public, but it Also Got the Neale

Family Making Future Plans’, ABC News (online, 12 July 2020). 13 Shih-Ning Then, et al, ‘Reinforcing Guardianship

Regimes Through Assisted Decision-Making: A

Scottish Perspective’ (2014) 4 Juridical Review 3. 14 Nandini Devi, ‘Supported Decision-Making and

Personal Autonomy for Persons with Intellectual

Disabilities: Article 12 of the UN Convention on

the Rights of Persons with Disabilities’ (2014) 41(4) Journal of Law Medicine and Ethics 792. 15 Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNTS 3 (entered into force 3 May 2008). 16 Ibid arts 1, 12. 17 Genevra Richardson, ‘Mental Disabilities and the

Law: From Substitute to Supported Decision-

Making?’ (2012) 65(1) Current Legal Problems 333 18 New South Wales Law Reform Commission,

Review of the Guardianship Act 1987 (Report No 145, May 2018) 19–21 [3.25]–[3.32] 19 Terry Carney, ‘Supported Decision-Making in

Australia: Meeting the Challenge of Moving from

Capacity to Capacity-Building?’ (2017) 35(2) Law in Context 44. 20 See Victorian Law Reform Commission,

Guardianship (Report No 24, January 2012). 21 See generally Genevra Richardson, ‘Mental

Disabilities and the Law: From Substitute to

Supported Decision Making?’ (2012) 65(1)

Current Legal Problems 333; Nandini Devi,

‘Supported Decision-Making and Personal

Autonomy for Persons with Intellectual

Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities’ (2014) 41(4) Journal of Law Medicine and Ethics 792. 22 Shih-Ning Then, et al, ‘Supporting Decision-

Making of Adults with Cognitive Disabilities:

The Role of Law Reform Agencies:

Recommendations, Rationales and Influence’ (2018) 61 International Journal of Law and Psychiatry 64–75; Terry Carney, ‘Supported Decision-

Making in Australia: Meeting the Challenge of

Moving from Capacity to Capacity-Building?’ (2017) 35(2) Law in Context 44. 23 Leighton Jay and Michael Schaper, ‘Microboards:

What Are They and How Do They Work?’ (2012) 26(4) Training and Management Development Methods 401-406, 401. 24 See Tim Stainton, ‘Supported Decision-Making in Canada: Principles, Policy and Practice’ (2016) 3(1) Research and Practice in Intellectual and

Developmental Disabilities 1 25 See Ibid. 26 South Australia, Parliamentary Debates, House of

Assembly, 26 February 1985, 2838–40 (Greg

Crafter). 27 This would include say a Morris dancing club (Dr

David Plater and Dr Mark ‘Matt’ Giancaspro are devotees of the fine art of Morris dancing). 28 Tim Stainton, ‘Supported Decision-Making in Canada: Principles, Policy and Practice’ (2016) 3(1) Research and Practice in Intellectual and

Developmental Disabilities 1. 29 Paul Malette, ‘Lifestyle Quality and Person-

Centred Support: Jeff, Janet, Stephanie, and the

Microboard Project’, in Steve Holburn and Peter

Vietze (eds), Person Centred Planning (Paul Brooks

Publishing, 2002).