Supported and substituted decision-making

2.51 There is an important distinction between ‘substituted’ and ‘supported’ decision-making. It is the key issue in the discussion surrounding the meaning and effect of art 12 of the CRPD.

2.52 Decision-making supports and arrangements for persons with disability take many forms along a spectrum, including:

• informal arrangements—usually involving family members, friends or other supporters;

• formal pre-emptive arrangements—anticipating future loss of legal capacity through appointment of a proxy, for example in enduring powers of attorney (financial/property), enduring guardianships (lifestyle) and advance care directives (health/medical);^[69] and

• formal arrangements—where a court or tribunal appoints a private manager or guardian, or a state-appointed trustee, guardian or advocate to make decisions on an individual’s behalf (guardians and administrators).^[70]

2.53 For Aboriginal and Torres Strait Islander people with disability decision-making may also have a collective quality.

2.54 Formal arrangements may also include recognition of support by family, friends or others where provision is made for designation of a ‘nominee’ for particular purposes, such as ‘correspondence nominees’ in the Centrelink context.^[71]

2.55 The formal appointment of guardians and administrators in Australia occurs under state and territory laws. Guardians and administrators are vested with power to make decisions on behalf of persons assessed to be unable to make decisions for themselves.

2.56 In the literature discussing support for people who may require decision-making assistance there is an evident tension in the way that the labels of ‘supported decision-making’ and ‘substituted decision-making’ are used. The discourse around art 12, and particularly the General Comment on art 12 when published as a draft,^[72] has exacerbated this tension. The ALRC considers that it is constructive to summarise the development of the use of these terms, and the conflict around them, and to place this in the context of formulating legal policy responses in this Inquiry that prioritise supported decision-making.

The emergence of ‘substitute’ decision-making

2.57 Decision-making support has a long history, conventionally summarised in the evolution and development of guardianship regimes. Professors Carney and David Tait describe the history of adult guardianship as comprising three periods:

The first period was characterised by an emphasis on protecting the property of individual family members who were disabled, with the courts stepping in to provide this security. The second period was one in which Public Trustee organisations took over responsibilities for property management for the whole groups of institutionalised people, usually without judicial review (or only token review). Medical control was growing, as forms of treatment and care became more specialised and sophisticated. Court-ordered guardianship was used occasionally, alongside various forms of welfare or mental health guardianship. The third stage maintained the ease of access characteristic of the second stage, but anchored reforms to a commitment to protecting individual freedoms. The state took on new responsibilities to minimise its own role.^[73]

2.58 The first period was one in which the focus was upon the person who was being ‘protected’ and what they would have wanted.^[74]

2.59 Guardianship and management of property reveal two broad themes: ‘providing appropriate protection for those unable to look after themselves’; and ‘preserving and, where possible, enhancing the personal autonomy of such persons’.^[75] However, as Sarah Burningham commented, when these themes are articulated in legislative regimes,

there is great potential for conflict between competing values as legislators attempt to manufacture statutes that both respect the adult’s autonomy and protect the adult from harm. This tension recurs throughout guardianship’s history.^[76]

2.60 There may also be a distinction between law and what happens in practice. ‘Traditional’ guardianship laws have been described as ‘exceedingly paternalistic’, protecting the estate of the person under protection, and not promoting their autonomy, especially where ‘plenary’ forms were used involving a complete vesting of authority in another person. The disability rights movement of the 1960s led to increasing pressure to move away from such models, championing a social, rather than a medical, model of disability.^[77]

The principles of new legislation were fairly consistent: the least restrictive option (with guardianship as a last resort), promoting maximum autonomy, encouraging habilitation and living as ‘normally’ as possible, and a preference for family over state proxies. This meant keeping orders as short and limited as possible. Generally ‘private’ arrangements were to be preferred to public ones, and a ‘substituted judgement’ principle was to be used rather than a ‘best interests’ one, where these came into conflict.^[78]

2.61 ‘Best interests’ standards, as suggested in this quote, were ones that preceded, and were to be contrasted with, a ‘substituted judgement’ approach. The ‘best interests’ principle was seen to reflect the idea of ‘beneficence’—a dominant theme in medical ethics, in which the ‘primary imperatives were for doing good for the patient, the avoidance of harm and the protection of life’.^[79]

2.62 A best interests standard was identified as associated with paternalistic approaches to persons with disability; ‘substituted judgment’ was seen as reflective of the person and respectful of their autonomy. Describing the emergence of the substituted judgment approach in the United States in the context of healthcare decision-making, Dr Mary Donnelly said that it was a standard ‘based on what the patient would have wished had [they] had capacity notwithstanding, in some cases, very limited evidence of [their] likely views or preferences’.^[80] Even in the medical context, therefore, the best interests standard had given way to autonomy.^[81]

2.63 In a report in 1995, Robin Creyke described the emergence of a ‘common core of principles’ to guide substitute decision-makers as ‘[o]ne of the most remarkable developments in this area of law’. It involved an appreciation that disability

is not an absolute state and that individuals’ capacities to reason and to make decisions continue, or can be developed, in some areas, albeit they are lost, or cannot be exercised without assistance or training in others. This awareness, coupled with the growing focus on people’s rights as individuals, led to the notion that the powers given to substitute decision-makers should be restricted and tailored to the special needs of the individual for whom assistance is needed.^[82]

2.64 The ‘guiding philosophies’ that became ‘strongly entrenched in Australian laws for guardians, financial managers or administrators’ by the 1990s were: the presumption of competence; normalisation; the least restrictive option; respect for autonomy; and fostering self-management.^[83] Even in a reformed context of being committed to advancing individuals’ rights, ‘best interests’ standards were still retained.

2.65 The Australian Guardianship and Administration Council (AGAC) described the approach of state and territory appointments as being ‘governed by three principles, variously expressed’, that:

(a) an appointment must promote as far as possible the person’s freedom of decision and action (sometimes called the ‘least restrictive alternative’ or ‘autonomy’ principle); and

(b) an appointment promotes the person’s best interests; and

(c) the person’s wishes are given effect to, wherever possible.^[84]

2.66 ‘Best interests’ and the person’s wishes are both used. Some ‘best interests’ standards have also been expressed in terms of prioritising the wishes and preferences of the person. For example, the Mental Capacity Act 2005 (UK) s 4(6) requires a person making a determination of ‘best interests’ to consider, ‘so far as is reasonably ascertainable’:

(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(c) the other factors that he would be likely to consider if he were able to do so.^[85]

2.67 In addition, s 4(7) requires the decision-maker to take into account, ‘if it is practicable and appropriate to consult them’, the views of:

(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,

(b) anyone engaged in caring for the person or interested in his welfare,

(c) any donee of a lasting power of attorney granted by the person, and

(d) any deputy appointed for the person by the court,

as to what would be in the person’s best interests and, in particular as to the matters mentioned in subsection (6).

2.68 Of such a hybrid standard, Donnelly writes that it ‘attempts to mitigate the consequences of a loss of capacity while staying within a best interests framework’.^[86]

Shift towards supported decision-making

2.69 Although substitute decision-making was a step that was seen as an advance and an expression of autonomy for persons with disability, and conceptually linked to the disability rights movement of the 1960s, by the second decade of the 21st century it had become the focus of criticism in a new articulation of a standard described as ‘supported decision-making’.

2.70 ‘Supported decision-making’ places the person who is being supported at the front of the decision-making process. The decision is theirs. As Carney summarises:

Supported decision-making encompasses a range of processes to support individuals to exercise their legal capacity, and these consist of:

• effective communication, including in the provision of information and advice to a person and through ensuring that a person is able to communicate their decisions to others;

• spending time to determine a person’s preferences and wishes;

• informal relationships of support between a person and members of their social networks;

• agreements or appointments to indicate that a relationship of support exists; and

• statutory relationships of support—whether through private or court/tribunal appointment.^[87]

2.71 In the context of developing ‘supported decision-making’, ‘substitute’ is often equated with ‘guardianship’ and both are assumed to represent a standard that is not consistent with the rights of persons with disability. However, interwoven in the discussion about ‘substitute’ and ‘supported’ decision-making is a lack of conceptual clarity about the role that a person’s wishes and preferences play when another acts for them as a ‘substitute’ decision-maker; and the role that a ‘supporter’ plays in assisting a person to make decisions. Conceptual confusion is also exacerbated when models use ‘best interests’ language but expressed in terms of giving priority to the person’s wishes and preferences. Given the tensions around the usage and understanding about ‘substituted’ decision-making, the ALRC considers that it might be preferable to move away from this language altogether. These tensions are seen in the discussion about the meaning and effect of art 12 and submissions from stakeholders in this Inquiry.

Substitute decision-making and the CRPD

2.72 An important issue to clarify is whether the CRPD permits substitute decision-making at all, or in what form. This also begs the question of what is meant by substitute decision-making in the CRPD context, how it is different from supported decision-making, and the extent to which arguments are ones of substance rather than of form. In the context of this Inquiry, the question becomes one of the implications for this analysis in informing reform proposals for Commonwealth laws and legal frameworks.

2.73 In September 2013, the UNCRPD focused attention on the distinction made between the concepts of substitute and supported decision-making in its Draft General Comment on Article 12.^[88] After submissions were considered, the General Comment was finalised in April 2014.^[89]

2.74 What is meant by the distinction? As the Committee explained, ‘support’ is a broad term—‘that encompasses both informal and formal support arrangements, of varying types and intensity’.^[90] It then spelled out its understanding of the difference between a ‘support’ model and a ‘substitute’ one.

2.75 A supported model comprises ‘various support options which give primacy to a person’s will and preferences and respect human rights norms’ and, while supported decision-making regimes ‘can take many forms’, ‘they should all incorporate key provisions to ensure compliance with article 12’.^[91] Supported decision-making processes prioritise personal autonomy and recognise that individuals should be empowered with information to make decisions—even bad ones (acknowledging the dignity of risk).^[92]

2.76 A substituted decision-making regime has different characteristics and can also take many forms. The common defining elements, as understood by the UNCPRD, are where

(i) legal capacity is removed from a person, even if this is just in respect of a single decision; (ii) a substitute decision-maker can be appointed by someone other than the person concerned, and this can be done against his or her will or (iii) any decision made by a substitute decision-maker is based on what is believed to be in the objective ‘best interests’ of the person concerned, as opposed to being based on the person’s own will and preferences.^[93]

2.77 The General Comment was prompted by what the UNCRPD described as ‘a general misunderstanding of the exact scope of the obligations of States Parties under Article 12’.^[94] Australia’s view, as expressed through its Interpretative Declaration in respect of art 12, is that the CRPD allows for fully supported or substituted decision-making arrangements. However, the Declaration notes that such arrangements may only be made where they are necessary, as a last resort, and subject to safeguards.^[95]

2.78 In the General Comment, the UNCRPD suggested that substitute decision-making regimes should be abolished and replaced by supported decision-making regimes and the development of supported decision-making alternatives. Most importantly, the Committee commented that ‘[t]he development of supported decision-making systems in parallel with the retention of substituted decision-making regimes is not sufficient to comply with Article 12’.^[96] What is required is ‘both the abolition of substitute decision-making regimes and the development of supported decision-making alternatives’.^[97]

2.79 The UNCRPD commented about Australia’s Interpretative Declaration in its concluding observations on the initial report of Australia to the Committee in September 2013. The Committee noted the referral to the ALRC of this Inquiry, but expressed concern ‘about the possibility of maintaining the regime of substitute decision-making, and that there is still no detailed and viable framework for supported decision-making in the exercise of legal capacity’.^[98]

2.80 The ALRC acknowledges that there is considerable tension about what is described as ‘substitute decision-making’. As noted above, so-called ‘substitute’ regimes were conceptually anchored in the will and preferences of the person. They may, in fact, not be proscribed under art 12—so long as the governing standard is not ‘the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences’.^[99] Would a regime that contains elements (i) and (ii) of the General Comment, but which has a subjective focus and not an objective lens in element (iii), be regarded as an acceptable supported decision-making model, and not a substituted decision-making model?

2.81 Stakeholders pointed to art 12(4) and its requirements of safeguards, implicitly acknowledging measures that may be regarded as ‘substitute’ models. The Office of the Public Advocate (SA) observed that the protections of art 12(4) ‘make sense as protections for substitute decision making as a “measure relating to exercising capacity”’.^[100] The Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance noted that Australia’s Interpretative Declaration reflected this safeguards approach in relation to substitute decision-making arrangements,

where decision-making support may extend to decisions being made by a third party on behalf of the person with the impairment, but where such arrangements should be put in place only when they are necessary in order to enable to exercise of legal capacity and only where there are sufficient safeguards in place.^[101]

2.82 While substitute decision-making models that reflect the constraints identified in such comments may technically not be contrary to the CRPD, ‘[t]here is still considerable debate over the significance of the [CRPD] for guardianship’.^[102] Is ‘guardianship’ compatible with the CRPD? Or is it rather a question of what kind of guardianship (or whatever other label is used) is incompatible with it—namely, only guardianship where decisions are made without reference to the wishes and preferences of the person under protection? John Chesterman states:

What is clear is that the Convention obliges countries to use guardianship as little as possible, and to limit as much as possible the powers that guardians have. Moreover, the Convention obliges us to utilise other processes, particularly now supported decision-making, wherever possible. In this way, the Convention is promoting some degree of uniformity, and will continue to do so as jurisdictions review their guardianship systems.^[103]

2.83 The Office of the Public Advocate (Qld) referred to the ongoing debate about guardianship and art 12 of the CRPD. It submitted that, ‘regardless of views about the compatibility of guardianship laws with the Convention’, and even though guardianship is supposed to be an intervention of last resort, ‘there are concerns that it is excessively used and misapplied’:

The accessibility and low cost of Australian guardianship systems have resulted in guardianship applications being sought in preference to other options that are less restrictive and do not infringe on people’s rights. Arguably, it has also resulted in some guardianship orders being broader than is necessary.^[104]

Australia’s Interpretative Declarations

2.84 In September 2013, Australia appeared before the 10th session of the UNCRPD.^[105] In its concluding observations, the Committee recommended that Australia review its Interpretative Declarations in order to withdraw them.^[106] The ALRC considers that the Declaration in relation to art 12 may be acting as a handbrake on reform and it is timely to reconsider the need for it, and, if retained, its wording.

2.85 In the Issues Paper, the ALRC asked about the impact the Interpretative Declaration in relation to art 12 had on (a) provision for supported or substitute decision-making arrangements; and (b) the recognition of people with disability before the law and their ability to exercise legal capacity.

2.86 The submissions revealed distinct themes:

• the conceptual blurring about supported and substitute decision-making evident in the CRPD and surrounding discussions;^[107]

• discomfort with the idea of ‘substitute decision-making’;^[108] and

• concerns about the Interpretative Declaration in relation to art 12—in terms of its wording or in its effect.

2.87 The OPA (SA), for example, identified some ambiguity in the terms of the Interpretative Declaration with respect to art 12—namely in its statement that the CRPD ‘allows for fully supported or substituted decision-making arrangements’.^[109] Does this mean that ‘fully supported’ arrangements are equated with ‘substituted’ arrangements? The OPA (SA) found this wording ‘unhelpful’, as ‘implying that fully supported and substituted are the same’, which it considered they were not.^[110]

2.88 On the other hand, the Centre for Regional Law and Justice and the National Rural Law and Justice Alliance, while agreeing about the ambiguity, submitted that, if substitute decision-making is to be understood as ‘fully supported’ decision-making, this is

consistent with the tenor of Article 12, in the sense that the role of any third-party decision maker should be primarily to enable the exercise of the person’s legal capacity on an equal basis with other members of the community. This means realising the decisions that the person themselves would make if they were able to do so, rather than making the decision that the third party decision maker considers in their best interests.^[111]

2.89 In other words, substitute decision-making should be regarded as consistent with art 12, so long as it is not based on a best interests standard; and to the extent that Australia’s Interpretative Declaration is only saying this, it is not objectionable. Some stakeholders supported the idea reflected in the Interpretative Declaration: that substitute decision-making may be appropriate in the limited circumstances identified: ‘as a last resort and subject to safeguards’.^[112]

2.90 The OPA (SA) submitted that the challenge in having such a declaration was not only that ‘it fulfils its legal purpose’, but also that it ‘does not unnecessarily slow change in giving people with disability equal rights’:

A declaration can be an impediment if it creates a sense of complacency that our existing substitute arrangements already fully meet the expectations of the UNCRPD, and there is no need to change practices.^[113]

2.91 The idea that having such a declaration may be an impediment to reform was also highlighted, for example, by the Disability Advocacy Network Australia (DANA), which argued that it

has the effect of protecting the status quo of paternalistic substitute decision making regimes, inhibiting reform and slowing exploration and implementation of supported decision-making models in Australia.^[114]

2.92 DANA submitted that ‘reform to the legislative and regulatory framework is vital and must be prioritised’ and ‘to retain the Declaration and continue to accept the status quo would substantially diminish Australia’s progress in disability rights and undermine its position as a State committed to advancing the inclusion, participation and wellbeing of people with disabilities, in our country and overseas’.^[115]

2.93 The ALRC considers that there is weight in the argument that the Interpretative Declaration may impede reform. This is not to say, however, that it is incorrect in law—given that there is considerable ambiguity and confusion in art 12, its surrounding discourse and even the wording of the Declaration itself. However, it has been identified as a matter of concern by the UNCRPD and by many interested stakeholders, which suggests that the timing is opportune to review it.

Implications for reform

2.94 A critical evaluation of all assisted decision-making models is called for in light of the UNCRPD’s comments and the range of responses by stakeholders in this Inquiry. While the CRPD and its surrounding discourse have set a new benchmark of expectation, not only in terms of law, but also practice, the themes remain essentially those identified by the ALRC in 1989: ‘providing appropriate protection for those unable to look after themselves’; and ‘preserving and, where possible, enhancing the personal autonomy of such persons’.^[116] There are also dangers in action that is not anchored in a strong conceptual framework, and tested in implementation. Caxton Legal Centre pointed out that

A number of writers comment that insufficient research has been done on both supported decision making models and guardianship itself, and warn against inviting a ‘bricolage’ of experimental models resembling a ‘young child’s pocketful of melted lollies on a hot summer’s day’.^[117] The task is complex and highly nuanced and as Terry Carney suggests, perhaps the best recommendation is to marshall the evidence and debate which is the least imperfect of the policy options at the disposal of the law.^[118]

2.95 Two key policy issues are how far ‘support’ can really go without attracting criticism of being a legal fiction;^[119] and the need to underpin change in practice by evidence. AGAC observed that, while supported decision-making ‘is an excellent development and will be extremely successful in avoiding guardianship for many people with disabilities’, it was ‘not capable of universal application’.^[120]

Arguments for the total abolition of substituted decision making in favor of supported decision making or co-decision making fail to address the question: what mechanisms will be in place for the persons who, even with the benefit of infinite resources, cannot or will not act to protect their own interests?

…

Some decision making impairments may be accommodated or rectified but at the end of the spectrum there will be a very small proportion of persons whose impairments mean that they lack decision-making ability, even with infinite resources available for support. For those persons, the appointment of a substitute decision maker becomes a reasonable accommodation to ensure that they are afforded basic human rights including the right to exercise legal capacity.^[121]

2.96 The policy impetus is clearly away from models that, in substance, form or language, appear as substitute decision-making ones. Although some have queried whether reformed law will have the desired effect in practice, and may be understood by stakeholders as ‘little different from its predecessor’, a shift to supported decision-making is to be highly commended’, as Carney states, ‘on the basis of its symbolic significance’:^[122]

It can be argued that at the very least a shift towards supported decision making sends two important symbolic messages regarding: (i) rejection of avoidable paternalism; and (ii) repositioning the state as an adjunct to (or facilitator of) civil society.^[123]

2.97 The issue for policy reform, and law reform, is how to express this in a way that clearly reflects the paradigm shift in approach and thinking to the levels of support required for those who require decision-making support. As the Caxton Legal Centre submitted:

The task is a tremendous one. The greatest challenges to ensuring equality before the law and the exercise of legal capacity for persons with disability involve the political will to endorse change to reflect consistency with a social model of disability, to provide sufficient education to the entire community, to stakeholders including all levels of employment and management, and to institutions and to implement the supply side and demand side reforms to ensure that supported decision making can effectively operate.^[124]

2.98 Legal and policy reform must also include consideration of when support amounts to full support—where a person is not able to exercise any decision-making ability and may not have access to supporters in their network of family. It is in such cases, where the appointment of someone to make decisions is needed, that the standard by which they act and the nature of their appointment become the critical focus.

2.99 The NSW Council for Intellectual Disability submitted that

Even with a comprehensive national strategy there will continue to be a need for a backstop of a substitute or fully supported decision-making system. In the absence of such a system, there will be no way to resolve many situations:

• in which people with intellectual disability are being neglected, abused, exploited or overprotected on an ongoing basis and are unable to recognise these breaches of rights or and assert themselves in responding to the breaches.

• in which there are disputes within families or between families and service providers or others about what decisions should be made about where a person should live, about health care or services or other lifestyle decisions.^[125]

2.100 The need for support, and appropriate policy responses, is likely to increase moreover as Australia’s population ages.^[126] The Caxton Legal Centre submitted that,

given the projected exponential increase in the ageing population and the consequent increase in the incidence of terminal cognitive diseases such as dementia and Alzheimer’s, coupled with the factor of social isolation and sparse or non-existent support networks for many older people, the retention of a process of formal substituted decision making may be essential.^[127]

2.101 But where institutional mechanisms of support cannot be avoided, ‘new priorities, processes and language’ are needed.^[128] The legal and policy issues must focus on key questions. When is it appropriate to appoint someone to act on behalf of another? What test is used to determine when this should happen? What should this be called? What standard should guide the actions of a person appointed to act on another’s behalf? What accountability mechanisms need to be in place? These questions necessarily focus on guardianship laws and the impact of the CRPD in moulding future reforms. As Barbara Carter observed:

Guardianship is the ‘elephant in the room’ of Art 12 and the debate continues to rage about whether guardianship is allowable under the Convention. This debate is effectively stymying considered discussion of how the Convention, in its totality should be implemented in domestic guardianship legislation.^[129]

2.102 The policy challenge for reform in this context was summed up neatly in the Caxton Legal Centre submission:

Can a guardianship system remain as indicated by Australia’s Interpretative Declaration and still provide full recognition of people with disability before the law and their ability to exercise legal capacity? The key issue centres around the adequacy of support mechanisms to assist persons with disability in decision making, so that substitute decision making truly is the last resort.^[130]

2.103 The ALRC considers that the focus of reform initiatives needs to be towards providing clarity around the expectations of persons with disability, their families and carers, and the courts and tribunals involved in appointing those to assist in decision-making where it is required. The policy pressure is clearly towards establishing and reinforcing frameworks of support in law and legal frameworks, and through funding of support models. The momentum is also towards building the ability of those who may require support so that they may become more effective and independent decision-makers.

2.104 There will also be a need for thorough research. The Caxton Legal Centre submitted that

models of supported decision making need to be thoroughly researched and evaluated particularly given the implications of profound change—the paradigm shift—across institutions, agencies, services and the community generally. The suggestion has been made that there is little evaluative research into the efficacy and acceptability of guardianship systems, and this too should be remedied. At the very least, guardianship should not continue on the basis of ‘business as usual’. And as a number of writers have observed, legislative change without equal attention to supply side and demand side reforms, including adequate resourcing of free legal services for persons with disability, will only be as useful as the paper it is printed on.^[131]

2.105 The hardest and most challenging policy area will always be in the context of those who require the most support: to build law and legal frameworks in ways that signal the paradigm shift of the CRPD in practice as well as in form. In this Discussion Paper the ALRC puts forward a model that seeks to signal this shift in Commonwealth laws and to provide the catalyst towards further reform at the state and territory level.