18.09.2014
Principle 2: Support
Persons who require support in decision-making must be provided with access to the support necessary for them to make, communicate and participate in decisions that affect their lives.
3.18 Decision-making principles should ask what decision-making support is needed so that people can exercise an equal right to make decisions. The emphasis must be on developing supported decision-making if the paradigm shift is to become a reality.
3.19 Support is the central theme in the CRPD. The Terms of Reference require the ALRC to consider:
- ‘how decision making by people with impairment that affects their decision making can be validly and effectively supported’; and
- ‘the role of family members and carers and paid supports … in supporting people with disability … and how this role should be recognised by law and legal frameworks’.
3.20 There are two elements: how a person can be supported in their decision-making; and how the law can give recognition to those who are providing the support. The ALRC’s approach is to place the person requiring decision-making support at the forefront—as the decision-maker—and to recognise the position of ‘supporters’ in law, both through a mechanism of recognition set out in relevant Commonwealth laws, and by including supporters in information flows in certain situations. The ‘supporter’ model is discussed in Chapter 4.
3.21 The National Decision-Making Principles and Guidelines reflect a spectrum of decision-making, from fully independent to supported decision-making, including where a person needs someone else to make decisions on their behalf as a ‘representative’. They are underpinned by a conceptualisation of autonomy as empowerment, noted in Chapter 1.
3.22 National Decision-Making Principle 2 (the Support Principle) expresses the concept of support at a high level.[15] The emphasis is on the person as a decision-maker who may require support to exercise their legal capacity—and not as a person with an impairment affecting their decision-making. Such language reflects art 12(3) of the CRPD:
States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
3.23 The Support Principle is not prescriptive as to by whom, and how, the support may be given. The Principle reflects a ‘general recognition that the focus must now move from the challenges facing a person with disability to the supports that should be provided to enable them to make decisions and exercise their legal capacity’.[16]
3.24 The Support Principle includes recognition of communication support.[17] It also reflects some of the general principles contained in the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act)—for example, that persons with disability ‘should be supported to participate in and contribute to social and economic life to the extent of their ability’.[18]
3.25 Stakeholders strongly endorsed this principle. The Centre for Disability Law and Policy, National University of Ireland, Galway (CDLP Galway) said that the proposal sought to realise the declaration by the United Nations Committee on the Rights of Persons with Disabilities (UNCRPD) that ‘supported decision-making must be available to all’.[19] Justice Connect and Seniors Rights Victoria (Justice Connect) agreed, stating:
We strongly support the proposal to introduce a decision making principle that a person who may require support in decision-making must be provided with the support necessary for them to make, communicate and participate in decisions that affect their lives.[20]
3.26 In practice, problems may arise from a lack of available supporters. Justice Connect observed:
While it is always preferable for family members and friends with a longstanding relationship and knowledge of the person’s wishes and preferences to act as a supporter or representative, there will be instances where a person has no such support available. One of the key risk factors of elder abuse is isolation. In our experience, many vulnerable older people do not have family members or friends willing to take up the role of supporter or representative.
It is in these situations that Kirby J suggests that ‘independent, dispassionate, neutral and professional public office holders can be especially useful and even necessary’.[21]
3.27 Justice Connect submitted that in order for a support principle to be meaningful, it would be ‘necessary for the Commonwealth to provide funding to a new or existing body to provide assistance to people requiring decision-making support in the absence of available alternatives’. It said that, ideally, an independent body would be provided with sufficient resources and funding to employ suitably qualified people to take on the role ‘equivalent to the operation of OPA/State Trustees in the Victorian jurisdiction, and other similar bodies in different states and territories’.[22]
3.28 In situations where a person does not have access to support, the state or territory may need to intervene by appointing someone to act as a supporter or representative. The review of state and territory guardianship and administration laws to ensure they are consistent with the National Decision-Making Principles and the Commonwealth decision-making model is discussed in Chapter 10.
Support Guidelines
Recommendation 3–2 Support Guidelines
(1) General
(a) Persons who require decision-making support should be supported to participate in and contribute to all aspects of life.
(b) Persons who require decision-making support should be supported in making decisions.
(c) The role of persons who provide decision-making support should be acknowledged and respected—including family members, carers or other significant people chosen to provide support.
(d) Persons who may require decision-making support may choose not to be supported.
(2) Assessing support needs
In assessing what support is required in decision-making, the following must be considered.
(a) All adults must be presumed to have ability to make decisions that affect their lives.
(b) A person must not be assumed to lack decision-making ability on the basis of having a disability.
(c) A person’s decision-making ability must be considered in the context of available supports.
(d) A person’s decision-making ability is to be assessed, not the outcome of the decision they want to make.
(e) A person’s decision-making ability will depend on the kind of decisions to be made.
(f) A person’s decision-making ability may evolve or fluctuate over time.
3.29 The ALRC’s approach recognises supported decision-making. This goes beyond general statements about the importance of support in the lives of persons with disability, to recommendations for a Commonwealth decision-making model under which supporters can be recognised in law. As discussed in Chapter 2, there is very strong support for legal models that reflect supported decision-making norms and aspirations.
3.30 The Support Guidelines reflect the Inquiry’s framing principles of dignity, autonomy, and inclusion and participation. They are consistent with the general principles of the NDIS Act, that people with disability should be supported to:
- exercise choice, including in relation to taking reasonable risks;[23] and
- receive reasonable and necessary supports, including early intervention supports.[24]
3.31 The Support Guidelines reflect the ALRC’s approach that assumptions about the extent of decision-making support should not be based on a person’s disability. As one stakeholder commented, ‘[a]ssumptions should … not be made that a person with physical disability will require supported decision-making or substitute decision making assistance’.[25]
Paragraph (1)
3.32 Paragraph (1)(a) is framed broadly and applies beyond support in decision-making. The OPA (SA and Vic) suggested that it ‘confuses the concept of decision-making support with support for participation and contributing to society, which may require a wider range of support services’.[26] The ALRC acknowledges this concern, but considers the provision sits appropriately within the aspirational framework of the National Decision-Making Principles.
3.33 The purpose of support is to enhance the ability of people to make decisions and exercise choice and control—as decision-makers. That control includes the choice to have a supporter and choose the supporter, or to decline support. Stakeholders suggested that the latter needs to be made clear,[27] and this is incorporated in paragraph (1)(d).
3.34 The ALRC’s model includes formal recognition of supporters in Commonwealth laws and legal frameworks. Paragraph (1)(c) of the Support Guidelines reflects this and is consistent with the NDIS Act’s general principle that: ‘the role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected’.[28] None of this detracts from the vital and continuing role that informal support plays in the lives of persons with disabilities. The model is designed to provide a channel for formal validation of such support, where the person chooses it, consistent with the Terms of Reference. Paragraph (1)(c) embraces both informal and formal support.
3.35 A ‘supporter’ is distinguished from a ‘representative’. Where a person is being supported in decision-making, the decision is their own, but made with support. Where a representative is appointed, the decision is made on behalf of the person, but involving the person to the greatest extent possible. How supporters and representatives are to act is considered in Chapter 4. The Support Guidelines reflect the recognition of family members, carers or other significant people as supporters at a high level. How they are recognised and how they may act is discussed in Chapter 4.
Paragraph (2)
3.36 The second paragraph of the Support Guidelines reflects an approach to assessing the support needed to exercise legal agency that is functional (ability to make the particular decision in question), not outcomes-based (the result or wisdom of the decision), or status-based (because of a condition). A functional approach of this kind ‘seeks to maximise the circumstances in which the right of autonomy is protected’.[29]
3.37 The Terms of Reference require the ALRC to consider ‘presumptions about a person’s ability to exercise legal capacity’ and ‘how a person’s ability to independently make decisions is assessed’. The ALRC considers that assessments of ‘ability to exercise legal capacity’ need to be refocused, by making the primary inquiry about the assessment of the support a person needs to exercise legal capacity, or agency. The second paragraph of the Support Guidelines reflects this approach.
3.38 The starting point in any assessment of support needs is a presumption of ability.[30] Paragraph (2)(a) reflects the object of CRPD art 12(2) ‘that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of their lives’. It also reflects the ALRC’s framing principles, particularly of equality and autonomy. A presumption of capacity is also the starting point of the common law, as discussed in Chapter 2. It places the onus on those who want to contest that a person has decision-making ability with respect to a particular transaction, or generally.
3.39 Legislative statements of this presumption often use the word ‘capacity’ and include the qualification ‘unless it is established that he or she lacks capacity’. The ALRC’s formulation keeps the qualification out of the Guidelines, reflecting the rights emphasis of the CRPD. The focus needs to be on assessment of the support necessary to exercise legal agency. The VLRC similarly recommended that a person ‘should not be considered to lack the capacity to make a decision if it is possible for them to make that decision with appropriate support’.[31] An assessment of ability in terms of support acts to encourage support, enhancing a person’s ability. Similarly, the Mental Capacity Act 2005 (UK) provides that ‘[a] person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’.[32]
3.40 The formulation in paragraph (2)(b) departs from status-based assessments. It reflects comments by the UNCRPD in its General Comment on art 12, and its criticism of conflating legal and mental capacity:
Legal capacity and mental capacity are distinct concepts. Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency). It is the key to accessing meaningful participation in society. Mental capacity refers to the decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors. … Under article 12 of the Convention, perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity.[33]
3.41 Bruce Arnold and Dr Wendy Bonython submitted that stereotyping detracts from equality, and prevents the ‘flourishing’ of people with disability:
Ultimately equality is a pernicious abstraction unless it fosters flourishing. Equality is significant because inequality is associated with discrimination, in particular the non-recognition of capabilities on the basis of stereotypes and the retention of barriers to the fulfilment of both people with disabilities and people around them.[34]
3.42 Paragraphs (2)(d)–(e) reflect a functional assessment of ability. These Guidelines may apply to a decision, or types of decision, depending on the circumstances. As the Council of Social Service of NSW (NCOSS) submitted:
Determinations about capacity must be made not only on a person-by-person basis, but also about every separate decision for each person, because people may have different capacity to make different decisions at different times.[35]
3.43 As the Law Commission of England and Wales concluded in a review of ‘mental incapacity’ in 1995, status-based assessments should be rejected as being ‘quite out of tune with the policy aim of enabling and encouraging people to take for themselves any decision which they have capacity to take’.[36]
3.44 In the context of the Support Guidelines, the functional approach is directed towards an assessment of the support needs of the person who requires decision-making support. In other specific contexts, this approach may also inform decisions about the need to appoint another to assist or represent the person.
3.45 There are concerns that functional tests of ability may present inappropriate barriers to the exercise of legal agency. However, it is not practicable to completely do away with some functional tests of ability that have consequences for participation in legal processes. For example, the integrity of a criminal trial (and, arguably, the criminal law itself) would be prejudiced if the defendant does not have the ability to understand and participate in a meaningful way. It may also breach the person’s human rights by denying them a fair trial, implicating arts 12 and 13 of the CRPD.
3.46 Other law reform bodies have endorsed the functional approach.[37] In its extensive inquiry on Queensland’s guardianship laws, the QLRC commented that the functional approach is a ‘widely accepted modern capacity model’,[38] and observed that
It has been suggested that one of the advantages of the functional approach is that it ‘best accommodates the reality that decision-making capacity is a continuum rather than an endpoint which can be neatly characterised as present or absent’. In contrast to the status model, there is no requirement for the presence of a particular type of disability or condition. The relevant question is whether the adult lacks capacity for making a decision about a given matter, for whatever cause and for whatever reason.[39]
3.47 The ALRC notes some criticism by the UNCRPD of what it described as a functional approach in its General Comment on art 12:
The functional approach attempts to assess mental capacity and deny legal capacity accordingly. … This approach is flawed for two key reasons: (a) it is discriminatorily applied to people with disabilities; and (b) it presumes to be able to accurately assess the inner-workings of the human mind and, when the person does not pass the assessment, it then denies him or her a core human right—the right to equal recognition before the law. In all of those approaches, a person’s disability and/or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. Article 12 does not permit such discriminatory denial of legal capacity, but rather requires that support be provided in the exercise of legal capacity.[40]
3.48 When the General Comment was in draft form, the emphasis in this paragraph was softened by a later comment that ‘functional tests of mental capacity, or outcome-based approaches that lead to denials of legal capacity violate Article 12 if they are either discriminatory or disproportionately affect the right of persons with disabilities to equality before the law’.[41] However, the final form of the General Comment dropped these words. The ALRC considers that, with appropriate safeguards, and a rights emphasis, there is no ‘discriminatory denial of legal capacity’ necessarily inherent in a functional test—provided the emphasis is placed principally on the support necessary for decision-making and that any appointment is for the purpose of protecting the person’s human rights.
3.49 Paragraph (2)(d) rejects an outcomes-based approach and captures what is described as ‘the dignity of risk’, which is underpinned by the framing principle of autonomy. As Dr Mary Donnelly explains,
Respect for the liberal principle of autonomy requires that external factors, including the outcome of the decision reached and the degree of risk assumed, are irrelevant to the determination of capacity. … [R]espect for autonomy is premised on allowing each individual to determine for herself what is good. Therefore, whether or not a person’s decision complies with other people’s perception of ‘the good’ is irrelevant to whether the person has capacity. In the words of the Law Commission [of England and Wales], according a role to the nature of the decision reached is inappropriate because it ‘penalises individuality and demands conformity at the expense of personal autonomy’.[42]
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[15]
Compare the formulation by the VLRC that people ‘with impaired decision-making ability should be provided with the support necessary for them to make, participate in and implement decisions that affect their lives’: Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 21(c). See also the QLRC formulation, ‘the adult’s right to be given any necessary support and access to information to enable the adult to make or participate in decisions affecting the adult’s life’: Queensland Law Reform Commission, A Review of Queensland’s Guardianship Laws, Final Report R67 (2010) rec 7–14(d).
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[16]
Office of the Public Advocate (Qld), Submission 05.
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[17]
Compare, eg, Adult Guardianship and Trusteeship Act 2008 (Alberta) s 2(b); Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 21(g).
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[18]
National Disability Insurance Scheme Act 2013 (Cth) s 4(2).
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[19]
Centre for Disability Law and Policy NUI Galway, Submission 130.
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[20]
Justice Connect and Seniors Rights Victoria, Submission 120.
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[21]
Ibid. Referring to Holt v Protective Commissioner (1993) 31 NSWLR 227.
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[22]
Justice Connect and Seniors Rights Victoria, Submission 120. Justice Connect added that volunteer support programs could also be an option, if funding does not support the establishment of a new body.
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[23]
National Disability Insurance Scheme Act 2013 (Cth) s 4(4). The principle is focused on choice ‘in the pursuit of their goals and the planning and delivery of their supports’, which is the focus of the NDIS.
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[24]
Ibid s 4(5).
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[25]
Physical Disability Council of NSW, Submission 32.
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[26]
Offices of the Public Advocate (SA and Vic), Submission 95.
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[27]
Centre for Disability Law and Policy NUI Galway, Submission 130; F Beaupert, P Gooding and L Steele, Submission 123; Offices of the Public Advocate (SA and Vic), Submission 95; AGAC, Submission 91.
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[28]
National Disability Insurance Scheme Act 2013 (Cth) s 4(12).
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[29]
Mary Donnelly, Healthcare Decision-Making and the Law—Autonomy, Capacity and the Limits of Liberalism (Cambridge University Press, 2010) 92. In recommending such an approach that was subsequently incorporated in the Mental Capacity Act 2005 (UK), the Law Commission of England and Wales deliberately rejected status-based assessments: Law Commission, Mental Incapacity, Report No 231 (1995) [3.5]–[3.6]. In that inquiry, the Law Commission received a ‘ringing endorsement’ of the functional approach: [3.6].
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[30]
See, eg, Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 26. Examples: Mental Capacity Act 2005 (UK) s 1(2); Adult Guardianship and Trusteeship Act 2008 (Alberta) s 2(a); Guardianship and Administration Act 2000 (Qld) ss 5–7, sch 1; National Disability Insurance Scheme Act 2013 (Cth) s 17A. See also: NCOSS, Submission 26; Mental Health Coordinating Council, Submission 07; Office of the Public Advocate (Qld), Submission 05.
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[31]
Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 27(e).
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[32]
Mental Capacity Act 2005 (UK) s 1(3).
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[33]
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 [13].
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[34]
B Arnold and W Bonython, Submission 38. The submission of NCOSS to the NDIS Rules also strongly rejected decisions based on stereotyping, referred to in its submission to this Inquiry: NCOSS, Submission 26.
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[35]
NCOSS, Submission 26.
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[36]
Law Commission, Mental Incapacity, Report No 231 (1995) [3.3].
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[37]
See, eg, Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 27(a); Legislative Council Standing Committee on Social Issues, Substitute Decision-Making for People Lacking Capacity, NSW Parliament (Report 43, 2010) [4.56]. With respect to para (f), compare, eg, Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 27(b); Queensland Law Reform Commission, A Review of Queensland’s Guardianship Laws, Final Report R67 (2010) rec 7–14(d). See also Legislative Council Standing Committee on Social Issues, Substitute Decision-Making for People Lacking Capacity, NSW Parliament (Report 43, 2010) rec 1.
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[38]
Queensland Law Reform Commission, A Review of Queensland’s Guardianship Laws, Final Report R67 (2010) [7.105].
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[39]
Ibid [7.103]. Citing Law Reform Commission of Ireland, Vulnerable Adults and the Law, Report No 83 (2006) [2.28].
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[40]
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 [15].
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[41]
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 [21] (emphasis added).
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[42]
Donnelly, above n 29, 101. Quoting Law Commission, Mental Incapacity, Report No 231 (1995) [3.4].