2.51 In this Report, the ALRC recommends shifting away from ‘substitute decision-making’ to ‘supported decision-making’. There is an important distinction between them and it is the key issue in the discussion surrounding the meaning and effect of art 12 of the CRPD. It is also the point at which most confusion has arisen.
2.52 Decision-making 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); 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).
2.53 Formal arrangements may also include recognition of support by family, friends or others—for example, where provision is made for the designation of a ‘nominee’ for particular purposes. Banks may provide facilities for co-signing, allowing designated others to conduct banking along with the account holder.
2.54 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.
2.55 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 ‘substitute decision-making’ are used. The discourse around art 12, and particularly the General Comment on art 12 when published as a draft in 2013, has exacerbated this tension.
2.56 General Comments are provided by way of guidance and are different from legally binding obligations as reflected in the CRPD itself. The Rules of Procedure of the UNCRPD provide that it may prepare General Comments ‘with a view to promoting its further implementation and assisting States Parties in fulfilling their reporting obligations’. Some of the tension arising from the discussion about models of decision-making is evident in the submissions made in response to the UNCRPD’s General Comment on art 12.
2.57 Australia has set out its understanding about art 12 in one of three Interpretative Declarations. In relation to art 12, Australia declared its understanding:
Australia recognizes that persons with disability enjoy legal capacity on an equal basis with others in all aspects of life. Australia declares its understanding that the Convention allows for fully supported or substituted decision-making arrangements, which provide for decisions to be made on behalf of a person, only where such arrangements are necessary, as a last resort and subject to safeguards.
2.58 This Declaration was made in the light of the contentiousness of guardianship in the discussions surrounding the development of the text of the CRPD and the criticism of what was described as ‘substituted’ decision-making. A number of other countries made similar declarations that the CRPD permits substitute decision-making in certain limited circumstances and subject to appropriate safeguards.
2.59 There are differing views about the effect of Australia’s Interpretative Declaration, particularly in relation to the role of substitute decision-making. The ALRC considers that this is driven by conceptual confusion that is impeding reform. To appreciate the significance of this tension, and to provide the context for the formulation of legal policy responses in this Inquiry, the following section explores some key concepts and the emergence of the concepts of ‘supported’ and ‘substitute’ decision making.
The emergence of ‘substitute’ decision-making
2.60 Any discussion of substitute decision-making needs to distinguish two separate issues: the first is the appointment of a person to act on behalf of another and the scope of the person’s powers; the second is the standard by which that appointee is to act. They are entirely separate points, but often confused. The appointee may be chosen by the person themselves, or by a court or tribunal. The standard is the test by which any decision-making by the appointee is to occur. To explain the distinction, it is constructive to set out a little of the history.
2.61 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.
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.
2.62 Such efforts sought to limit the scope of appointment of substitute decision-makers, such as guardians, to achieve the ‘least restrictive option’. But they also focused on the standard by which the appointee was to act: ‘best interests’ standards, as suggested in this quote, were ones that preceded, and were to be contrasted with, a ‘substituted judgment’ 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’. A ‘best interests’ standard ‘requires a determination to be made by applying an objective test as to what would be in the person’s best interests’. A ‘substituted judgment’ standard is ‘what the person would have wanted’, based for example on past preferences. Substitute decision-making can therefore apply in two broadly different ways—one involves an objective ‘best interests’ standard, the other involves a focus on what the person wants or would have wanted (‘substituted judgment’).
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.
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. So when a ‘substitute’ was appointed to act on behalf of another, their powers were to be restricted and the standard by which they were to act was increasingly one of ‘substituted judgment’, based on what the person would have wanted.
2.65 Even in a reformed context of being committed to advancing individuals’ rights, however, ‘best interests’ standards were still retained, in language and in form. The Australian Guardianship and Administration Council 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.
2.66 ‘Best interests’ and the person’s wishes are both used—a combination of subjective and objective. 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.
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, Dr Mary Donnelly writes that it ‘attempts to mitigate the consequences of a loss of capacity while staying within a best interests framework’. The overall question is an objective one, but it is informed by past and present wishes and the opinion of others as to what would be in the person’s best interests.
Shift towards supported decision-making
2.69 By the second decade of the 21st century, the approach advocated is described as ‘supported decision-making’, which 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.
2.70 Supported decision-making emphasises the ability of a person to make decisions, provided they are supported to the extent necessary to make and communicate their decisions. It focuses on what the person wants.
2.71 In the context of developing—and championing—‘supported decision-making’, however, ‘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. The fact that someone is appointed as a substitute becomes problematic of itself, rather than focusing upon how the substitute is to act.
2.72 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 ‘substitute’ decision-making—and the blurring between ‘substituted judgment’ and ‘substitute decision-making’—the ALRC considers that it might be preferable to move away from this language altogether. The terms the ALRC recommends are ‘supporter’ and ‘representative’ contained in the Commonwealth decision-making model set out in this Report.
Substitute decision-making and the CRPD
2.73 An important issue to clarify is whether the CRPD permits substitute decision-making at all, or in what form. This also raises the questions of what is meant by substitute decision-making in the CRPD context, how is it different from supported decision-making and what are the implications of this analysis in informing reform recommendations.
2.74 The ALRC considers that the issue of the appointment of a person to act needs to be clearly differentiated from the standard by which the appointee—or substitute—is to act. The danger in analytical terms is to condemn the appointment of a person to act on behalf of another simply by virtue of the appointment, presupposing that the appointee will not act in a way that places the individual at the centre of the decision-making process. The ALRC considers that much of the conceptual confusion lies in a failure properly to distinguish these two things. As noted above, substitute decision-making can apply an objective ‘best interests’ standard or can use a ‘substituted judgment’ standard of what the person wants or would have wanted.
2.75 In its General Comment on art 12, finalised in April 2014, the UNCRPD said that ‘support’ is a broad term—‘that encompasses both informal and formal support arrangements, of varying types and intensity’. It then spelled out its understanding of the difference between a ‘support’ model and a ‘substitute’ one.
2.76 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’. 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).
2.77 A substitute 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.
2.78 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’. 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 substitute decision-making regimes is not sufficient to comply with Article 12’. What is required is ‘both the abolition of substitute decision-making regimes and the development of supported decision-making alternatives’.
2.79 The UNCRPD commented on 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’.
2.80 The ALRC acknowledges that there is considerable tension about what is described as ‘substitute decision-making’. As noted above, the so-called ‘substitute judgment’ approach was anchored in the will and preferences of the person—the significant conceptual shift related to how the appointed substitute was to act, namely away from an objective ‘best interests’ standard.
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”’. 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 the exercise of legal capacity and only where there are sufficient safeguards in place.
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’. 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?
2.83 Australia welcomed the initiative to clarify the scope of States Parties’ obligations under art 12 and noted ‘the Committee’s perception of a general failure of States Parties to recognise that the human-rights based model of disability implies a shift from the substitute decision making paradigm to one that is based on supported decision-making’:
Australia acknowledges the importance of supporting decision-making where this is possible, but considers that a human rights-based model of disability does not preclude all substituted decision-making. Such decisions should only be made on behalf of others where this is necessary, as a last resort, and subject to safeguards.
2.84 Australia considered the discussion of art 12(1) and (4) ‘particularly helpful’, but was critical of the characterisation of art 12(3) ‘as never permitting substituted decision-making’,and that the General Comment did not acknowledge
Situations where no amount of support will assist, such as where a person may have a severe cognitive or psychiatric impairment and is unable to understand, make or communicate a decision. It is unfortunate that the complexities of this issue are not acknowledged and discussed in the current draft.
2.85 Australia reiterated the position under art 6 of the ICCPR, in cases of medical emergency where a person is not able to consent to treatment, it is permissible to provide such treatment where this is necessary for life-saving purposes.
Australia considers the same principle to be relevant to persons with disabilities, and that the exclusion of any form of substituted decision making in relation to persons with disabilities would be incompatible with these other international human rights obligations.
2.86 Australia expressed concern that the draft General Comment was characterising the entirety of art 12 ‘in absolute terms’, although art 12 itself is not expressed in this fashion:
Australia considers that while it is important that the legal capacity of persons with disabilities is respected to the fullest extent possible, there are circumstances in which substituted decision-making may be the only available option. Australia considers that guidance from the Committee on the most human rights compatible approach in situations where a person does not have, either temporarily or permanently, the capacity to make or communicate a decision, would be useful to States Parties.
2.87 Australia argued that, in a number of respects, the draft General Comment sought to extend the scope of art 12 beyond that of existing expressions of both equality before the law and ‘legal capacity’ in international human rights law. It stated that the most significant example of this is ‘the characterisation of art 12 as requiring supported decision-making and not permitting substituted decision-making in any circumstances’:
The statement that there are no circumstances permissible in which a person may be deprived of the right to recognition as a person before the law, or to have this right limited, relates to article 16 of the ICCPR, rather than article 12 of the Convention. The ICCPR provides for this in article 4(2), which states that no derogation from that right is permissible even in times of public emergency. The Convention does not contain a similar provision. However, Australia accepts that this is applicable in relation to article 12(1).
2.88 Australia reiterated that it did not consider art 12 required the abolition of all substitute decision-making regimes and mechanisms. Other States Parties expressed similar concerns with the language of the draft General Comment.
2.89 There are distinct threads in these responses. First, that an approach of supporting decision-making is paramount; secondly, that any appointment of a person to act on behalf of another should be limited, a last resort and subject to safeguards compatible with human rights; and thirdly, that the CRPD does not prohibit the appointment of a person to act on behalf of another. What is not clearly disentangled, however, is separating the fact of an appointment in certain circumstances and how the person is to act. Both are subsumed in the argument that, in some limited circumstances, ‘substitute decision making’ may be appropriate, without closely interrogating what substitute decision-making means. The argument is therefore expressed in terms of ‘supported’ versus ‘substitute’ decision-making.
2.90 The ALRC considers that the focus of analysis needs to be on how support is translated into a principles-based model that may guide law reform. How should support be articulated as the principal idea—consistent with the Convention and the concerns of the UNCRPD? What is the standard by which supporters and anyone appointed to act on behalf of another are to act? What is the standard to apply when the will and preferences of a person are not evident and cannot be determined? What is a human rights compatible approach? The standing and impact of Australia’s Interpretative Declaration in relation to art 12 is relevant to these matters.
Sometimes referred to collectively as ‘living wills’. See, eg, Rosalind Croucher and Prue Vines, Succession: Families, Property and Death (LexisNexis Butterworths, 4th ed, 2013) [4.3].
In some cases, such as emergency medical decisions, there are statutory hierarchies of those who may authorise certain actions—‘generic lists of suitable proxies in the legislation’: Carney and Tait, above n 53, 4.
Eg, Centrelink ‘correspondence nominees’. See Ch 4.
United Nations Committee on the Rights of Persons with Disabilities, Draft General Comment on Article 12 of the Convention—Equal Recognition before the Law, 2013. The final General Comments No 1 and No 2 were adopted by the UNCRPD on 11 April 2014.
UNCRPD, Rules of Procedure (5 June 2014) r 47.
An ‘Interpretative Declaration’ is a unilateral statement made by a State or an international organisation, in which that State or organisation purports to specify or clarify the meaning or scope of a treaty or of certain of its provisions, outlining the State’s understanding of obligations under the CRPD, without purporting to exclude or modify its legal effects: International Law Commission, Guide to Practice on Reservations to Treaties (2011) [1.1]–[1.3].
Convention on the Rights of Persons with Disabilities: Declarations and Reservations (Australia), opened for signature 30 March 2007, 999 UNTS 3 (entered into force 3 May 2008). There were also Interpretative Declarations in relation to arts 17 and 18.
Eg, Norway, Estonia and Canada: see Australian Government Attorney-General’s Department, Submission 113.
Eg, Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) [6.95]–[6.96].
Carney and Tait, above n 53, 17–18. Citations omitted.
Donnelly, above n 51, 11. Donnelly refers to the Hippocratic Oath.
Explanatory Notes, Mental Capacity Act 2005 (UK) .
R Creyke, Who Can Decide? Legal Decision-Making for Others, Aged and Community Care Service Development and Evaluation Reports, No 19, Department of Human Services and Health, Aged and Community Care Division (1995) 38.
AGAC, Submission 51.
A similar model is included, for example, in the Mental Health Bill 2013 (WA), pt 2 div 3, ‘Best interests of a person’.
Donnelly, above n 51, 203. This approach, she writes, is ‘not without difficulties’: 203.
Carney, above n 47, 60.
United Nations Committee on the Rights of Persons with Disabilities, General Comment No 1 on Article 12 of the Convention—Equal Recognition before the Law, 2014.
United Nations Committee on the Rights of Persons with Disabilities, Draft General Comment on Article 12 of the Convention—Equal Recognition before the Law, 2013 .
Bernadette McSherry, above n 52, 26.
United Nations Committee on the Rights of Persons with Disabilities, General Comment No 1 on Article 12 of the Convention—Equal Recognition before the Law, 2014 .
Ibid . Emphasis added.
Ibid. Emphasis added.
Committee on the Rights of Persons with Disability, ‘Concluding Observations on the Initial Report of Australia, Adopted by the Committee at Its Tenth Session (2-13 September 2013)’ (United Nations, 4 October 2013) 9, .
Office of the Public Advocate (SA), Submission 17. See, also, Caxton Legal Centre, Submission 67.
Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20.
John Chesterman, ‘The Future of Adult Guardianship in Federal Australia’ (2013) 66 Australian Social Work 26, 31.
Australian Government, Submission to the UN Committee on the Rights of Persons with Disabilities, Draft General Comment on Article 12 of the Convention–Equal Recognition before the Law, 2014 .
See submissions to the UNCRPD on the draft General Comment from, eg, Denmark, New Zealand and Norway: Australian Government Attorney-General’s Department, Submission 113.