2.91 In September 2013, Australia appeared before the 10th session of the UNCRPD. In its concluding observations, the UNCRPD recommended that Australia review its Interpretative Declarations in order to withdraw them.
2.92 The ALRC asked what impact the Interpretative Declaration regarding art 12 had on (a) the 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. In the Discussion Paper, the ALRC suggested that, in view of concerns identified by the UNCRPD and some stakeholders, the time was opportune to review it, with a view to withdrawing it.
2.93 The ALRC considers that the clear momentum is towards supported decision-making and supporting the ability to communicate wishes and preferences with respect to decision-making. Australia was a leader in advocating the CRPD and is well placed to continue this role. The developments at the Commonwealth level, particularly through the introduction of the National Disability Insurance Scheme and the decision-making model recommended in this Report provide a template and a catalyst for propelling reform federally. In such a context, the Interpretative Declaration may be seen, perhaps, to be unnecessary.
2.94 In its present form it may also be considered unclear or as representing an overabundance of caution. While Interpretative Declarations can be modified at any time, they may also be understood as essentially historical notes, marking a government’s understanding at a particular time. As noted above, other States Parties made similar declarations at the time.
2.95 In this context, the ALRC considered whether to recommend that the Interpretative Declaration in relation to art 12 be withdrawn. Some would advocate this because they see the Declaration as hindering ‘Australia’s reform efforts and its continued leadership in the field of promoting equal recognition before the law for persons with disabilities’. On the other hand, the Australian Government Attorney-General’s Department submitted that ‘this focus on the Interpretative Declaration is unhelpful, as of itself the United Nations Convention on the Rights of Persons with Disabilities has no effect in domestic law in the absence of laws or policies adopted by the Australian Parliament’.
2.96 Insofar as the Declaration is simply stating that there are occasions when a person may be appointed to act on behalf of another—as a substitute—the ALRC considers that this is a correct understanding of the CRPD. The ALRC also considers that the UNCRPD was principally condemning a best interests approach, not a will and preferences approach. As set out in Chapter 4, the ALRC uses the term ‘representative’ in such cases and sets out a standard which embodies the ‘will and preferences’ approach.
2.97 The ALRC concludes that there is an opportunity to send a clear message and to provide conceptual clarity in place of any confusion, or negative messaging, arising out of the Interpretative Declaration. If the Declaration remains as it is, or without further explanation, it may be seen to create ‘a sense of complacency’; and may ‘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’.
2.98 However the ALRC acknowledges that there are many ways to do this—regardless of whether the Declaration itself remains. For example, in Australia’s Initial Report to the UNCRPD greater clarification of Australia’s understanding of obligations under art 12 were set out:
Australia strongly supports the right of persons with disabilities to legal capacity. In some cases, persons with cognitive or decision-making disabilities may require support in exercising that capacity. In Australia, substituted decision-making will only be used as a measure of last resort where such arrangements are considered necessary, and are subject to safeguards in accordance with article 12(4). For example, substituted decision-making may be necessary as a last resort to ensure that persons with disabilities are not denied access to proper medical treatment because of an inability to assess or communicate their needs and preferences. Australia’s interpretive declaration in relation to article 12 of the Convention sets out the Government’s understanding of our obligations under this article. Australia’s guardianship laws and the safeguards contained in them aim to ensure abuse, exploitation and neglect does not occur, consistent with article 16 of the Convention.
2.99 The adoption by the Australian Government of the National Decision-Making Principles and the Commonwealth decision-making model set out in this Report will provide impetus for the further reform of laws nationally to promote better compliance with the CRPD.
2.100 Submissions revealed distinct, and at times conflicting, themes:
- ambiguity in the Declaration—particularly about the meaning of fully supported or substitute decision-making arrangements;
- concerns about the standard by which the person is to act, rather than about the appointment of a representative in itself; and
- discomfort with the idea of ‘substitute decision-making’ altogether.
2.101 The ALRC considers that the crucial issue is how to advance, to the extent possible, supported decision-making in a federal system—a matter also pointed out by the UNCRPD in its concluding observations on Australia. This does not preclude the appointment of another to act on behalf of a person, either by the person themselves (such as by an advance directive or enduring power of attorney) or through an institutional mechanism such as a court or tribunal. Insofar as the Interpretative Declaration is asserting this, it is not incorrect as a matter of law, despite the somewhat confusing terminology in which it is expressed. The focus, in policy terms, then falls on the limits surrounding the appointment of another to act in a person’s stead and also upon the standard by which the person is to act. These are the safeguards central to art 12(4). The consequence, in a federal system in which guardianship laws are state based, is to propel a critical evaluation of all decision-making models, by whatever name.
2.102 There are also dangers in action that is not anchored in a strong conceptual framework, and tested in implementation. The 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’. 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.
2.103 Two key policy issues are how far ‘support’ can really go without attracting criticism of being a legal fiction; and the need to underpin change in practice by evidence.
2.104 The policy impetus is clearly away from models that, in substance, form or language, appear as ones that are not reflective of the individual as decision-maker, based on their wishes and preferences to the greatest extent possible. 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 has great ‘symbolic significance’:
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.
2.105 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 needed for those who require decision-making support. In this respect there is force in the UNCRPD’s observations about a lack of a ‘detailed and viable framework for supported decision-making in the exercise of legal capacity’. 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.
2.106 Legal and policy reform must also include consideration of when ‘it is not practicable to determine the will and preferences of an individual’. 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. As Denmark urged, in its response to the Draft General Comment on art 12,
Above all, the general comment should take into account that there will be individuals, such as those who are unconscious, who are living in a persistent vegetative state, have very advanced dementia, or have the most profound intellectual disabilities, who will not be in a position to understand that there is a decision to be made, the nature of that decision, or the consequence of any apparently expressed will or preference. If substitute care and treatment decisions are not made for these individuals, they will run the risk of being exploited, neglected, or even left to die. To assume that no one would ever require someone else to make a decision on their behalf would against this background not only be flagrantly wrong but ultimately irresponsible.
2.107 In other words, some system of appointment of others to act is a necessary human rights backstop. The Offices of the Public Advocate (South Australia and Victoria) identified the danger that an ‘overemphasis’ on a person’s autonomy may be ‘to the detriment of protection for people who need guardianship as a rights enhancing mechanism’. They argued that ‘guardianship, properly done, is a positive use of state power that enhances the inclusion and legal personhood of the represented person’.
2.108 Such concerns were also expressed by the NSW Council for Intellectual Disability:
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.
2.109 The need for support, and appropriate policy responses, is likely to increase as Australia’s population ages. Justice Connect and Seniors Rights Victoria observed that, as Australia’s population is ageing, both the number of older people and their proportion of the population are increasing:
It has been estimated that in the 30 years from 2007, the number of Australians aged over 65 years will more than double, increasing from 2.7 to 6.3 million and will constitute 24% of the population. An increase in the incidence of age-related disability, in particular dementia, is expected to accompany the ageing of the population. The ageing population together with the rising incidence of dementia amongst that population has led to a concerning rise in applications for guardianship and administrative appointments outside the more traditional scope of intellectual disabilities.
2.110 Where institutional mechanisms of support cannot be avoided, ‘new priorities, processes and language’ are needed. 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?
2.111 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.
2.112 John Chesterman suggests that
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.
2.113 The ALRC considers that the focus of reform initiatives needs to be towards providing greater 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.
2.114 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.
2.115 For many, resourcing is a key issue:
There is no escaping the reality that realising the right to equal recognition before the law for all people in our community requires resourcing from the grassroots up, as well as the top down.
2.116 The most difficult policy challenges in this area concern those who require the most support—where a person’s will and preferences are difficult, or impossible to determine and they need someone else to make decisions on their behalf. These hard cases should not, however, be treated as a barrier to building law and legal frameworks that signal the paradigm shift of the CRPD towards supported decision-making in practice, as well as in form.
Office of the High Commissioner for Human Rights, 10th Session of the Committee on the Rights of Persons with Disabilities (12 November 2013).
Committee on the Rights of Persons with Disability, above n 96.
Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws, Issues Paper No 44 (2013) Question 1.
Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws, Discussion Paper No 81 (2014) Proposal 2–1.
International Law Commission, Guide to Practice on Reservations to Treaties (2011) [2.4.8].
Centre for Disability Law and Policy NUI Galway, Submission 130.
Australian Government Attorney-General’s Department, Submission 113.
A point made in a number of submissions: eg, Disability Discrimination Legal Service Inc and Villamanta Disability Rights Legal Service Inc, Submission 115; Scope, Submission 88; Carers Alliance, Submission 84; NMHCCF and MHCA, Submission 81; WWDA, Submission 58; National Disability Services, Submission 49; Disability Advocacy Network Australia, Submission 36; Cairns Community Legal Centre, Submission 30.
Office of the Public Advocate (SA), Submission 17.
Disability Advocacy Network Australia, Submission 36.
The ALRC also acknowledges the comments of the Australian Government Attorney-General’s Department that, where there are complaints under the Optional Protocol alleging violations of art 12, the Interpretative Declaration provides the basis for responding in setting out the understanding of obligations that Australia has accepted under the CRPD: Australian Government Attorney-General’s Department, Submission 113.
Australia’s Initial Report under the Convention on the Rights of Persons with Disabilities, 3 December 2010 .
Disability Discrimination Legal Service Inc and Villamanta Disability Rights Legal Service Inc, Submission 115; Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20; Office of the Public Advocate (SA), Submission 17; Mental Health Coordinating Council, Submission 07.
Disability Discrimination Legal Service Inc and Villamanta Disability Rights Legal Service Inc, Submission 115; Offices of the Public Advocate (SA and Vic), Submission 95; B Arnold and Dr W Bonython, Submission 38; NSW Council for Intellectual Disability, Submission 33; Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20.
F Beaupert, P Gooding and L Steele, Submission 123.
Committee on the Rights of Persons with Disability, above n 96.
Citing Terry Carney and Fleur Beaupert, ‘Public and Private Bricolage—Challenges Balancing Law, Services and Civil Society in Advancing CRPD Supported Decision-Making’ (2013) 36 University of New South Wales Law Journal 175, 177.
Caxton Legal Centre, Submission 67. Citing Terry Carney, above n 16, 15. Carney and Beaupert, above n 118, 177. Carney and Beaupert, above n 117, 177.
Harmon, above n 30. See also Donnelly, above n 51, 185–187.
Carney, above n 47, 62.
Terry Carney, above n 16, 12.
Committee on the Rights of Persons with Disability, above n 96, .
Caxton Legal Centre, Submission 67.
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 .
Denmark, Submission No 19 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.
Offices of the Public Advocate (SA and Vic), Submission 95. Emphasis added.
Ibid. Emphasis added. ‘Guardians need to be properly resourced and the person’s wishes must be paramount in all decisions’.
NSW Council for Intellectual Disability, Submission 33.
Demographic shifts were outlined in the ALRC’s report: Australian Law Reform Commission, Access All Ages—Older Workers and Commonwealth Laws, Report No 120 (2013) ch 2.
Justice Connect and Seniors Rights Victoria, Submission 120. See also NSW Council for Intellectual Disability, Submission 131; Caxton Legal Centre, Submission 67.
ADACAS, Submission 29.
Barbara Carter, ‘Adult Guardianship: Human Rights or Social Justice?’ (2010) 18 Journal of Law and Medicine 143, 145.
Chesterman, above n 99, 31.
Caxton Legal Centre, Submission 67.
PWDA, ACDL and AHR Centre, Submission 136.