Source: https://www.alrc.gov.au/news/modelling-supported-decision-making-in-commonwealth-laws-the-alrcs-2014-report-and-making-it-work/
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Modelling Supported Decision Making in Commonwealth Laws - The ALRC's 2014 Report and Making it Work | ALRC
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AGAC 2016 National Conference, 18 October 2016, Rosalind F Croucher*
Acknowledgment & Introduction
I begin by acknowledging the Gadigal people of the Eora nation, who are the traditional owners and custodians of the land on which we meet—and I pay my respects to their elders, both past and present and acknowledge Indigenous guests attending today.
I see my task in this presentation as embracing two aspects: first, to explain the ‘model’ that the Australian Law Reform Commission (ALRC) recommended in the 2014 report, Equality, Capacity and Disability in Commonwealth Laws, ALRC Report 124 (which I will call the ‘Disability Report’); the second is the ‘carry forward’ or ‘making it work’ part, and this will allow me to refer to the ALRC’s current inquiry on Elder Abuse.
Supported Decision-Making: the New Paradigm
On 24 November 2014 the Australian Law Reform Commission’s report, Equality, Capacity and Disability in Commonwealth Laws, ALRC Report 124 (2014), was tabled, marking the entry into the public domain of the conclusions of this significant inquiry. In leading the inquiry, I was assisted wonderfully by Graeme Innes AM, then Disability Discrimination Commissioner, who was given an additional ‘hat’ as a part time Commissioner of the ALRC. We were also supported by an excellent Advisory Committee, including, amongst others, Graeme Smith, NSW Public Guardian; Emeritus Professor Terry Carney AO of the University of Sydney; and Rosemary Kayess, Visiting Fellow, Australian Human Rights Centre, University of New South Wales.[1]
A principal task, as we saw it, was to translate into Commonwealth laws the paradigm shift marked by the UN Convention on the Rights of Persons with Disabilities (‘CRPD’; or the ‘DisCo’, as Graeme Innes called it).
We were asked to consider ‘how maximising individual autonomy and independence could be modelled in Commonwealth laws and legal frameworks’.[2] This was to prove pivotal; as so much of laws relating to capacity are entrenched in state laws, especially the law relating to guardianship and administration.
The model is one in which supported decision-making is central. The process by which we reached it was, for me, an enlightening one—particularly in relation to how one deals with the central issue of ‘legal capacity’ and also teasing out the implications of the CRPD in relation to substitute decision-making. Let me share a little of that journey.
My background is in succession and property law and I am very familiar with law’s approach to capacity questions, ones that arise usually in retrospect when a transaction is challenged or sought to be undone on the basis of a lack of legal capacity: transactions like contracts or wills. Law manages such matters in a functional way. Capacity is considered as fluctuating and calibrated to the transaction in hand. This is certainly how testamentary capacity is tested, in which the leading case involved someone who had been committed to a ‘lunatic asylum’.[3] The decision about his capacity to make a will was a legal one, not a medical one.[4] His will withstood challenge—as his ‘insane delusions’ were considered irrelevant to the questions involved in making a will.
Legal capacity sets the threshold for individuals to take certain actions that have legal consequences. For example, a range of transactions may involve an age threshold as a benchmark of when a person is regarded as being able to act independently and with binding effect—to have legal agency to make ‘legally effective choices’.[5] Legal capacity goes to the validity, in law, of choices; and being accountable for the choices made. ‘Those who make the choice’, Emeritus Professor Carney AO states, ‘should be able to provide valid consent, and make decisions for which they can be held accountable. They should, in short, be legally competent.’[6]
Given law’s retrospective approach, the starting point is a presumption of capacity. A challenge on the basis of a lack of capacity (in the sense of agency) is brought to rebut this presumption of legal capacity.[7] Where a lack of the required level of understanding is proved in the particular circumstances, the transaction may be set aside. Such doctrines focus on a transaction and the circumstances surrounding it. They are decision-specific and involve assessments of understanding relevant to the transaction being challenged. As a lawyer, this appeared to me respectful and based on the premise of autonomy. The common law presumption of capacity has, after all, been described as ‘the law’s endorsement of autonomy’.[8]
But in leading the ALRC inquiry on capacity and seeking to frame National Principles, which seemed a good place to begin, my eyes were opened. We had to start somewhere else. If you start from a presumption, you separate people: between those with capacity, and those without. For in every presumption lies the possibility of rebuttal. It is a binary model; and for those with lived experience of disability it is deeply troubling. What the idea of equality means to people with disability is not a definition of capacity based on a presumption. The United Nations Committee on the Rights of Persons with Disabilities (UNCRPD) emphasised that the idea of equality reflected in art 12 is essentially about the exercise of human rights: ‘[e]quality before the law is a basic and general principle of human rights protection and is indispensable for the exercise of other human rights’.[9] This understanding led us to state, as the first of the National Decision-Making Principles that frame our report:
The four National Decision-Making Principles, with accompanying guidelines, reflect the key ideas and values upon which the ALRC’s approach is based. The four general principles are drawn from the CRPD, other international models, stakeholder submissions and the work of other bodies and individuals. They are not prescriptive, and are of general application. Principles 2–4 are these:
The language in the report signals the distinction between supporting a person, and substituting for that person as a ‘representative’. We chose this latter term carefully and sought to make a clear distinction between supporting and representing a person. But we also recognised that there are circumstances where a substitute, a representative, may be needed—to make decisions for a person—and to focus on such appointments through a safeguarding approach. Our choice of the new term, ‘representative’, was deliberate and it was made in light of evident tension concerning the use of the labels of ‘supported decision-making’ and ‘substitute decision-making’.
In our discussion about the appointment of representatives we were also hitting head-on the views articulated by the United Nations Committee on the Rights of Persons with Disabilities (UNCRPD) in its General Comment on art 12, ‘Equal recognition before the law’. The submissions made to the UNCRPD in response to its draft General Comment on art 12 in 2013[10] reflect the tensions that have arisen around the meaning of ‘substitute decision making’. In its final comment, the UNCRPD concluded 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’.[11] What is required is ‘both the abolition of substitute decision-making regimes and the development of supported decision-making alternatives’.[12]
This conclusion, and indeed the hardening of position of the Committee between the draft and final versions of this General Comment, may not sit entirely comfortably where states parties are committed to reforming their guardianship laws towards supported decision-making models, but still see the need for the appointment of a substitute decision-maker in certain cases as a matter of last resort—and consider that art 12(4) only makes sense in this context. Indeed, that was, and is, the Australian position.[13] Australia was not alone in that view.[14]
Much argument here has focused on art 12(4):
What were ‘measures’ that provided ‘appropriate and effective safeguards to prevent abuse’, which were to ‘apply for the shortest time possible’ and be subject to regular and independent review? Surely this was dealing with what we would call substitute decision makers?
In working my way through all of the arguments in this area, I came to the conclusion that any discussion about 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. After all, the appointee may be chosen by the person themselves, for example through instruments such as enduring powers of attorney; or by a court or tribunal, in the appointment of a guardian or financial administrator. The standard is the test by which any decision-making by the appointee is to occur. 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.
As this audience would know very well, decision-making support has a long history, conventionally summarised in the evolution and development of guardianship regimes.[15] Traditional guardianship laws may be seen as exceedingly paternalistic,[16] 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.[17]
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; and ‘best interests’ standards were superseded by a ‘substituted judgment’ approach. The ‘best interests’ principle was an objective standard (what was in the person’s best interests) and reflected 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’.[18] A ‘substituted judgment’ standard, in contrast, is ‘what the person would have wanted’,[19] 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’).
By the second decade of the 21st century, the approach being advocated was described in a new way, as ‘supported decision-making’, placing the person who is being supported at the front of the decision-making process and the decision as theirs, as an expression of their ‘will and preferences’. 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.
As our exploration of the literature in the Disability Inquiry revealed, however, in the context of developing—and championing—‘supported decision-making’, ‘substitute’ has often been equated with ‘guardianship’ and both are assumed to represent a standard that is inconsistent 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. Interwoven in the discussion about ‘substitute’ and ‘supported’ decision-making is therefore 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 are expressed in terms of giving priority to the person’s wishes and preferences (as in the UK)[20]—a hybrid model. Given the tensions around the usage and understanding about ‘substitute’ decision-making—and the blurring between ‘substituted judgment’ and ‘substitute decision-making’—the ALRC concluded that it was preferable to move away from this language altogether. Reminiscent of the comment the ALRC made in the 1989 report on Guardianship, that ‘[t]here is a problem of language when dealing with people with disabilities’,[21] in the Disability Inquiry we developed what I describe as a ‘new lexicon’.[22]
What words had to go? ‘Unsound mind’ for starters—and we made a specific recommendation about getting rid of this remnant phrase in the Commonwealth Electoral Act. Old words like ‘guardian’ should go too—in time. Where we could suggest a model, as we have done in Commonwealth laws, we used the terms ‘supporter’ and ‘representative’.
The new Commonwealth decision-making model encourages the adoption of supported decision-making at a national level and introduces mechanisms for the appointment of ‘supporters’ for adults who may require decision-making support; and provisions relating to ‘representatives’ to address circumstances in which a person may desire (eg through an instrument made in advance), or require, someone else to make decisions for them. The model is based on principles of dignity, equality, autonomy, inclusion and participation—and accountability.
We introduced the concept of the appointment of a ‘supporter’ because part of our brief was to consider ‘the role of family members and carers and paid supports’ in relation to both formal and informal decisions and ‘how this role should be recognised by laws and legal frameworks’. The ALRC gave effect to this recognition by setting out a ‘supporter’ role: not to detract in any way from informal support, but to create a pathway for the appointment of a supporter, with a role that was clearly different from a ‘representative’. The current mechanisms closest to the role of a supporter in current Commonwealth laws, are the provision for a ‘correspondence nominee’ for Centrelink purposes and nominated representatives in relation to eHealth.[23] As part of the new lexicon we recommended, such roles would be brought in line with the ‘supporter’ category in the decision-making model.
‘Representative’ was chosen to distance ourselves from the historical baggage of ‘guardianship’. In settling upon the word ‘representative’ I drew upon my research background in succession law where the ‘legal personal representative’, in particular the executor, acts in execution of what the deceased person wanted: they literally represent the deceased through the discharge of the intentions of the deceased expressed in the person’s will.
But it is much more than names. The essence is the understanding of what the roles mean in terms of how a supporter or a representative can act. The standard for action is set out in the Will, Preferences and Rights Guidelines, that complement Principle 3, the relevant parts of which are these:
The ‘bottom line’ in the model is the acknowledgment of the role of substitute decision maker but only in the way that is described: namely, it is a representative role, guided by the will and preferences of the individual to the extent that this can be ascertained, including drawing upon information that family and carers may be able to provide to find out what the person ‘would likely want’. But there are also some ‘out’ clauses, as it were. The representative must act in a way to uphold the person’s human rights; and may override the person’s will and preferences where necessary to prevent harm.
To play the devil’s advocate, one could ask, isn’t this ‘rights’ approach just like ‘best interests’? Should ‘best interests’ be retained as a fallback, as was suggested to us in the Inquiry?[24] Is it just that the ‘best interests’ standard is poorly understood? The Office of the Public Advocate (Qld) observed that
‘Best interests’ is often applied in an unsystematic way without any unpacking of relevant considerations, including the values and principles applied in the decision-making process.[25]
The OPA (Qld) also argued that, without ‘careful guidance, education, training and advice’, a rights-based approach could be similarly fraught and that the ‘kind of cultural change that needs to be achieved will be difficult to effect without a holistic strategy’.[26] Guidelines and codes of practice were cited as examples of things that could drive such cultural change. ‘At the end of the day’, said the Mental Health Coordinating Council’, the legislation ‘must have an underpinning code of practice that provides the key framework and principles of best practice’.[27]
Given that the UNCRPD had ‘closed the door’ on substitute decision making in finalising its General Comment on art 12, the UNCRPD needed to address art 12(4), particularly with respect to those for whom it was not possible to determine will and preferences. The following paragraph was added to the final comment:
Where, after significant efforts have been made, it is not practicable to determine the will and preferences of an individual, the ‘best interpretation of will and preferences’ must replace the ‘best interests’ determinations. This respects the rights, will and preferences of the individual, in accordance with article 12, paragraph 4. The ‘best interests’ principle is not a safeguard which complies with article 12 in relation to adults. The ‘will and preferences’ paradigm must replace the ‘best interests’ paradigm to ensure that persons with disabilities enjoy the right to legal capacity on an equal basis with others.[28]
The Centre for Disability Law and Policy NUI Galway referred to this ‘best interpretation’ approach in submitting to our inquiry that,
Whereas good efforts should be made to determine the will and preference of the relevant person, where the ‘best interpretation’ arrived at leads to a conflict of human rights (eg right to health in conflict with right to self-determination), it may be better for outside decision-makers to adhere to subjective guidance and follow the principle of ‘best interpretation’ rather than setting forth ‘objective’ rules which would allow the representative to decide which balance of human rights to achieve.[29]
CDLP Galway also referred to amendments to Irish legislation, which inserted the following definition of ‘best interpretation’:
the interpretation of the relevant person’s past and present communication (using all forms of communication, including, where relevant, total communication, augmented or alternative communication, and non-verbal communication, such as gestures and actions) that seems most reasonably justified in the circumstances.[30]
This looks similar to our approach to what the person ‘would likely want’. We were not persuaded that a ‘best interpretation’ approach should necessarily be the default standard when a person’s will and preferences are not known, nor are capable of being made known—rather than the rights approach that we settled upon.
Judges have developed other approaches in such contexts, for example:
what a reasonable and ordinary man might do in the position of a ‘lunatic’ with respect to the disposition of his surplus income—the standard developed by Lord Eldon LC in the leading case concerning the ‘substituted judgment’ approach;[31] and
the ‘wise and just husband and father’ approach in relation to family provision litigation.[32]
The danger in such approaches is that they reveal a certain blurring of the subjective and objective in the creation of a ‘legal fiction’.[33] They also run the risk of contradicting other principles advocated by the UNCRPD in its General Comment, in particular that
All forms of support in the exercise of legal capacity (including more intensive forms of support) must be based on the will and preference of the person, not on what is perceived as being in his or her objective best interests.[34]
We concluded that it was better to use human rights standards as the benchmark, accompanied by appropriate guidelines, codes of practice and other explanatory material, developed over time. Such material should be accompanied by appropriate training and guidance.
Where a representative is appointed, the decision-making standard to be applied is, therefore, to give priority to the will and preferences of the person but, if these cannot be determined, decision-making must emphasise the human rights of the person, particularly as articulated in the CRPD. This approach uses objective standards—because the subjective cannot be determined.
The human rights approach is also reflected in the paragraph 2(d) of the Will, Preferences and Rights Guidelines, which provides that a representative may override the will and preferences of a person only where necessary to prevent harm. This is consistent with the CRPD in that, for example, art 17 may require the representative to make a decision that protects the person’s ‘physical and mental integrity’, notwithstanding the decision conflicts with the person’s expressed will and preferences. A qualification of this kind tests the limits of autonomy, particularly where the limitation concerns harm to oneself. Examples are seen usually in the context of mental health legislation: to save a patient’s life, or to prevent a patient from seriously injuring themselves or others. Safeguards may be included in terms of ensuring that the course of action proposed is the ‘least restrictive’ option.[35] The latter approach is captured as the first point in the Safeguards Guidelines.
(c) subject to regular, independent and impartial monitoring and review.[36]
Whenever a limit is included, considerable care is needed in translating it into practice. A provision that a person’s will and preferences may be overridden based on the outcome of a decision—in this case, harm—runs contrary to a focus on ability that is not outcomes-based. In the Support Guidelines, it is spelled out that, in assessing what support is required in decision-making, a person’s decision-making ability is to be assessed, not the outcome of the decision they want to make.[37] However, it is not necessarily inconsistent with a principle of autonomy, as autonomy is not an absolute concept.[38] The Australian Guardianship and Administration Council (AGAC) reiterated that,
in certain circumstances, the views of the person might lead to outcomes that are significantly detrimental to the person’s health and welfare. In these circumstances, recognition of the representative’s authority to make decisions contrary to the wishes of the person is essential.[39]
The development of codes of practice, guidance and accountability measures will, over time, lead to a shift in culture and practice. An important aspect of this cultural shift arises in decisions where the person involved has expressed their will and preferences in ways that are likely to be financially detrimental. The issue is captured in the phrase ‘dignity of risk’. While the UNCRPD has referred to the need to protect people from ‘undue influence’, it has also said that protection must ‘respect the rights, will and preferences of the person, including the right to take risks and make mistakes’.[40]
The National Decision-Making Principles and the accompanying Guidelines are not legislative, nor did we recommend that they be enacted, but rather that they provide the conceptual backdrop to implementation elsewhere. Reform at the state and territory level is critical to the implementation of the ALRC model, because many important areas of decision-making are governed by state and territory law—including in relation to guardianship and administration, consent to medical treatment, mental health and disability services—and the ALRC recommended that such laws be reviewed to be consistent with the Commonwealth model advocated.[41]
While the overall conclusion was that ‘last resort’ models of appointment of substitute decision makers may not be contrary to the CRPD, guardianship laws need to be brought in line with an approach that reflects the will and preferences of the individual for whom decisions are to be made. Hence the question becomes not whether ‘guardianship’ is compatible with the CRPD, but rather what kind of guardianship (or whatever other label is used) is incompatible with it?
In speaking at the launch of the Disability Report, Graeme Smith commented that
… we must begin with a clean slate so to speak. We must imagine a world where a person can easily access the support they need to enable them to exercise their legal capacity rather than the existing binary system in which we operate where a person’s diminished mental capacity equals the appointment of a substitute decision maker.
When this process begins, I encourage members of the wider community to engage with their respective state and territory governments in the task of law reform ahead, a task that should follow the tabling of this report.[42]
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 may 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 move towards supported decision-making in practice, as well as in form.
ALRC reports are reports to the Attorney-General. It is for Government, thereafter, to give effect to them. While there has not been a specific government response to the Disability Report, when we were asked in February this year to work on Elder Abuse, the Terms of Reference required the ALRC to have regard to the recommendations in our own report,[43] which may be seen to be an implicit endorsement of our disability work. In a number of areas, the idea of ‘making it work’ is clearly on the table.
The ALRC comes to this inquiry having undertaken several inquiries in recent years that will provide a rich resource, both in terms of conceptualising the issues, but also in a very practical sense, in the excellent relationships we have built with a number of stakeholders. Here I include not just the Disability Inquiry, but also the landmark report in 2010 on Family Violence;[44] and the 2013 report that looked at barriers for older people in the workforce.[45] Each of those inquiries took us into the kind of thinking necessary to conceptualise the problems that traverse both across state and federal boundaries.
On 15 June, coinciding with Elder Abuse Awareness Day, the ALRC released the first consultation document for the inquiry, an Issues Paper calling for responses from the public to its 50 questions.[46] We received over 200 submissions, which is a very significant response. Just last week, on 14 October, we had the second Advisory Committee meeting for the inquiry, considering draft proposals for the Discussion Paper which will be released on 12 December. Submissions in response are due by the end of February next year. The Inquiry will conclude in the delivery of a final report to the Attorney-General in May 2017.
When it comes to tribunal appointments, perhaps most relevant to those attending this conference, some concerns have been expressed, for example, if the person concerned is not consulted about matters; various issues concerning interpreters, particularly if there is any perception of conflict of interest by virtue of a relationship to the person; enforced isolation by guardians; and mismanagement of funds by financial administrators.
In the Issues Paper we noted that the criteria for granting guardianship and administration are similar in each state and territory and that guardians and administrators have statutory duties, including to exercise their powers in the way that is least restrictive of a person’s freedom of decision, in the ‘best interests’ of the person represented and taking account of the wishes of that person. Clearly, ‘best interests’ standards need reviewing. There have been great strides in the supported decision-making direction already. Some ‘best interests’ tests are in substance, if not form, ‘will and preferences’ tests. But the standard needs to be clearly articulated through the ‘will and preferences’ lens for it to become normative. I note in this respect that the third edition of the National Standards of Public Guardianship, developed by AGAC and published this year, incorporate the National Decision-Making Principles as the foundation for the ten national standards. These include the requirement that all reasonable efforts are made to support represented persons to exercise their own decision-making capacity; that the will and preferences of the person are ascertained and that decisions accord with these whenever possible.
As Graeme Smith commented at the launch of the Disability Report, we also acknowledged that guardianship and administration are intended to be protective of the interests of vulnerable people—including those vulnerable because of age-related decision-making impairment.[47] But there are problems in terms of how we are framing the Elder Abuse inquiry if the response is overly protective:
One standard response to elder abuse where the victim has a significant cognitive impairment is to remove decision-making authority and appoint a substitute decision-maker. However, guardianship and administration may be a problematic response to elder abuse, by focusing on the agency of the victim, rather than dealing with the conduct of those perpetrating abuse.[48]
The practical challenge is that there is no bright line between a person who needs to be supported to make decisions and a person for whom having a substitute decision-maker is the only option. Third parties need confidence in the outcome of transactions. An assessment of abilities (‘capacity testing’ in old language) will be needed by tribunals when deciding whether or not the appointment of a guardian or financial administrator is necessary—and the scope of such an appointment.
In the Disability Report we did not shy away from this issue. Rather we cast it in a different light, recommending an approach to such evaluations that focuses on an assessment of support, rather than on ‘capacity’. It was also framed not as the starting point in the principles, but interwoven in the principle of support and contained in the Support Guidelines:
We concluded 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 approach set out in the Support Guidelines to assessing the support needed to exercise legal agency is one that is functional (ability to make the particular decision in question); it is not outcomes-based (the result or wisdom of the decision), nor 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’.[49] It is essentially the approach of the common law seen in cases like the one I referred to about wills.[50] It has been supported in other law reform inquiries.[51]
Here you may spot what looks like the old ‘presumption of capacity’ in paragraph (a). Yes, but it is cast as a presumption of ability and it is not the starting point in framing questions of decision-making but rather the starting point in assessing support needs to exercise legal agency. Legislative statements of this presumption often use the word ‘capacity’ and include the qualification ‘unless it is established that he or she lacks capacity’.[52] 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’.[53] 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’.[54]
There are concerns that functional tests of ability may present inappropriate barriers to the exercise of legal agency. However, the ALRC concluded 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.[55]
We did note, however, some criticism by the UNCRPD, in its General Comment on art 12, of what it described as a functional approach. The Committee said that such an approach was ‘flawed’ for two 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.[56]
When the General Comment was in draft form, the emphasis in this paragraph was softer, as it had a rider: ‘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’.[57] However, the final form of the General Comment dropped these words. We considered 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.
An example of how a functional approach has been taken into practice is reflected in the Capacity Toolkit, published in 2009 by the NSW Attorney General’s Department for government and community workers, professionals, families and carers in NSW. It is written in a clear and plain style, interspersed with excellent case studies. It demonstrates how a functional approach to support can become part of normal practice and embedded understanding.
Returning to the Elder Abuse inquiry, we have been hearing about examples of what I might call overzealousness in action by guardians and administrators. The Law Council gave us this example:
A lawyer was asked in writing to visit an older woman in residential care. The older woman had both an Administrator and an appointed Guardian. The woman requested help and wanted advice on how to challenge her guardianship order and the decisions made under it, which included the decision on where she would live. The lawyer contacted both the professional Guardian and the private Administrator to seek permission to visit the woman. The lawyer was granted permission and visited the residential care facility with an interpreter. The professional Guardian separately contacted the aged care facility and advised them that permission was not granted, as a result they refused the lawyer and interpreter entry. There was no alternative but to make an application to the Victorian Civil and Administrative Tribunal (VCAT) to direct the Guardian to permit a professional visit. At the Tribunal the Guardian was unrepentant and insisted that it was important that the resident become ‘settled’ into the aged care facility.
A professional Guardian arranged for the admission of an elderly woman into residential care. The Guardian gave directives to the facility that the woman would not be able to receive visitors, including her relatives and neighbours. The Guardian did not want the woman to know that her house was being sold and to get upset. Once the house was sold she would have no house to return to, and she would have to get used to the idea that she had no other options.
Are these examples of a ‘best interests’ standard in action, the guardian deciding what they considered the best interests of the person: that she be ‘settled’ into the aged care facility; that she be ‘protected’ from knowing that her house was being sold?
A further one from the Law Council reflects ‘will and preferences’ clashing with what an aged care facility understood to be its role:
An enquiry was taken from a man housed in residential care who had been an eminent engineer in his working life. He acknowledged he had high care needs but wanted to travel interstate to attend an annual dinner which was named after him and being held in his honour. He needed assistance with his plans to travel as he was immobilised and could not leave the residence without assistance. The residential care provider refused to allow him to travel and said he needs two people to accompany him and the people were not available. (In fact there were many people who volunteered to do this for him). The residential care facility misinterpreted their duty of care as extending to his absences and refused to take the risk of being liable for his wellbeing during a time of absence.
However, the need to balance protection and autonomy means that accountability mechanisms should not be so onerous as to discourage people from accepting decision-making responsibilities.
An attorney taking money from bank accounts and through an ATM and spending the funds on themselves.[58]
Professor Susan Kurrle provided this example:
78 year old lady, recently moved from home to low level residential care following hospital admission with pneumonia. She was cognitively intact, but all her financial affairs were handled by a lifelong friend (with an enduring Power of Attorney). The woman’s daughter appeared and has taken her mother to a solicitor, got her to change her will, revoke the current POA and have herself appointed. The daughter has now put her mother’s house on the market and sold her car. The woman is very upset but feels powerless to do anything (‘she’s my daughter and I love her’).[59]
Another example was provided by the Australian Research Network on Law and Ageing:
In one case an 80-year-old Italian woman wanted to remain living in her home after the death of her husband. She was mobile and was well networked in her local area. There were women her own age who used to speak to her in Italian. The woman could speak some English but preferred to speak Italian.
The woman’s son ‘decided’ that she could not cope on her own. He arranged for the house to be sold and insisted that his mother execute the documents. The mother felt that she was obliged to do so and wanted to preserve the relationship with her son.
The mother moved in with the son’s family and was very unhappy. The money from the sale of the house was taken by the son. She experienced social isolation as she was out of a familiar environment and did not have the same access to public transport. Eventually her daughter, concerned about what had occurred and about her mother, took the mother to live with her. The money is gone and the son no longer speaks to his mother.[60]
And from Uniting Care Australia:
Mrs B is 75 year-old woman residing in a residential aged care home. She has right sided paralysis, and some subtle frontal and executive cognitive deficits. She appointed her son as her Enduring Power of Attorney, Medical Power of Attorney and Enduring Power of Guardianship prior to her condition deteriorating.
On admission to residential care Mrs B’s cognitive function was assessed and indicated she had minimal impairment but there was some short term memory loss. Her son had taken over management of all of her financial affairs and he viewed her as ‘dementing’ despite her having been assessed by her doctor and a geriatrician as having minimal deficit and able to make her own decisions. Her son gradually ceased to consult with her and made decisions on her behalf. He removed all of her jewellery for ‘safe keeping’ and was slow to bring in her personal items from her home. He provided her with regular spending money but repeatedly questioned her about what she spent it on. She became very concerned at his overly controlling ways but she valued the relationship with her son as her only child and did not wish to challenge him as she was fearful the relationship may be placed in jeopardy.
In conversations with the residential manager, Mrs B disclosed the son’s denial of her simple requests; the reducing amounts of funds he gave her for her personal use; the interrogative measures he took with her and his repeated derogatory comments about her ‘dementing’. With the support of the residential manager, Mrs B agreed to involve Aged Rights Advocacy Service and gradually felt more empowered to challenge her son. Her son refused to participate in any mediation meetings and Mrs B eventually took action in revoking her son’s legal position in managing her affairs and appointed another person to this role. She has subsequently not had any interaction with her son.[61]
This report and its recommendations are significant steps in addressing the denial of legal capacity for people with disability. It challenges the essentialism of liberal theory and rejects the notion we are all rational islands. That decision making and contracts—even the social contract through voting—do not happen in isolation of support and trusting relationships.
Until people with disability can freely express their will and preference through reforms such as these, they will continue to lead a segregated and isolated life where they are vulnerable to exploitation, abuse and having their rights ignored. They are at risk of living a life of someone else’s choosing through the veil of best interests until we have systems in place that promote and protect the expression of everybody’s will, preference and rights. For people with disability, these reforms demonstrate a willingness to accept disability as part of human diversity and to build social structures that are truly inclusive of all and fundamentally embrace people with disability as part of the human family.[62]
Appendix: United Nations Convention on the Rights of Persons with Disabilities
Article 12, ‘Equal recognition before the law’
* President, Australian Law Reform Commission; Adjunct Professor, Macquarie University. This presentation draws from the work of the ALRC in both the Disability and Elder Abuse inquiries. Where additional comment is given, this should be regarded as my own remarks and not necessarily those of the ALRC.
[1] Other members of the Advisory Committee were: the Hon Justice Berna Collier, Federal Court of Australia; Phillip French, Director, Australian Centre for Disability Law; Stephen Gianni, Acting CEO, the Australian Federation of Disability Organisations; David Fintan, Corporate Counsel, National Disability Insurance Agency; Damian Griffis, Executive Director, First People’s Disability Network; Emeritus Professor Ron McCallum AO, Sydney Law School, University of Sydney; Christina Ryan, General Manager, Advocacy for Inclusion; Therese Sands, Co-Chief Executive, People with Disability Australia; Professor Cameron Stewart, Sydney Law School, University of Sydney; Matthew Wright, CEO, the Australian Federation of Disability Organisations.
[2] The Terms of Reference are set out at the front of the report: https://www.alrc.gov.au/publications/terms-reference-6. Emphasis added.
[3] Banks v Goodfellow (1870) LR 5 QB 549.
[4] For example, in the context of wills, a person is presumed to have the legal capacity to make a will and it is for those who challenge a testator’s capacity to bring evidence of incapacity: Bull v Fulton (1942) 66 CLR 295. The presumption of capacity arises if the will is rational on its face and is duly executed. See, eg, Gino Dal Pont and Ken Mackie, Law of Succession (LexisNexis Butterworths, 2013) ch 2. This was expressed in the legal maxim ‘omnia praesumuntur rite et somemniter esse acta’: all acts are presumed to have been done rightly and regularly.
[5] Terry Carney and David Tait, The Adult Guardianship Experiment—Tribunals and Popular Justice (Federation Press, 1997) 3. With respect to the idea of legal agency, see Mary Donnelly, Healthcare Decision-Making and the Law—Autonomy, Capacity and the Limits of Liberalism (Cambridge University Press, 2010) 24; and Bernadette McSherry, ‘Legal Capacity Under the Convention on the Rights of Persons with Disabilities’ (2012) 22 Legal Issues 23. The right to recognition as a legal agent is also reflected in art 12(5) CRPD, which outlines the duty of States Parties to ‘take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit and shall ensure that persons with disabilities are not arbitrarily deprived of their property: 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 [11].
[6] Terry Carney and David Tait, The Adult Guardianship Experiment—Tribunals and Popular Justice (Federation Press, 1997) 3.
[7] Equity also includes protective doctrines for vulnerable people, such as the doctrines concerning undue influence and unconscionable transactions: see, eg, Dyson Heydon and Mark Leeming, Cases and Materials on Equity and Trusts (LexisNexis Butterworths, 8th ed, 2011) ch 14.
[8] Mary Donnelly, Healthcare Decision-Making and the Law—Autonomy, Capacity and the Limits of Liberalism (Cambridge University Press, 2010) 93.
[9] 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 [1].
[10] 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.
[11] Ibid [24]. Emphasis added. The full text of article 12 is included as an appendix to this paper.
[13] 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.
[14] 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.
[15] For the history of guardianship, see, eg: Blackstone, above n 2, 292–294; Terry Carney, ‘Civil and Social Guardianship for Intellectually Handicapped People’ (1981) 8 Monash UL Rev. 199; John Seymour, ‘Parens Patriae and Wardship Powers: Their Nature and Origins’ [1994] Oxford Journal of Legal Studies 159; Sarah Burningham, ‘Developments in Canadian Adult Guardianship and Co-Decision-Making Law’ (2009) 18 Dalhousie J. Legal Stud. 119; Shih-Ning Then, ‘Evolution and Innovation in Guardianship Laws: Assisted Decision-Making’ (2013) 35 Sydney Law Review 133.
[16] Eg, Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) [6.95]–[6.96].
[17] Ibid [2.8].
[18] Mary Donnelly, Healthcare Decision-Making and the Law—Autonomy, Capacity and the Limits of Liberalism (Cambridge University Press, 2010), 11. Donnelly refers to the Hippocratic Oath.
[19] Explanatory Notes, Mental Capacity Act 2005 (UK) [28].
[20] Mental Capacity Act 2005 (UK) s 4(6).
[21] Australian Law Reform Commission, Guardianship and Management of Property, Report No 52 (1989) [1.3].
[22] ALRC Report, [1.8].
[23] Personally Controlled Electronic Health Records Act 2012 (Cth) s 7.
[24] Eg, the NSWCID submitted that ‘[t]here should also be caution about completely dispensing with the best interests approach—it has weaknesses but it also has the strength of being able to flexibly accommodate the unique and fluctuating circumstances of an individual’: NSW Council for Intellectual Disability, Submission 33.
[25] Office of the Public Advocate (Qld), Submission 110.
[27] Mental Health Coordinating Council, Submission 94.
[28] 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 [21].
[29] Centre for Disability Law and Policy NUI Galway, Submission 130.
[30] Ibid. Quoting the From Mental Capacity to Legal Capacity (Amendment) (No 2) Assisted Decision-Making (Capacity) Bill (2013) [2.1.5].
[31] Ex Parte Whitbread, in the Matter of Hinde, a Lunatic (1816) 2 Mer 99, 35 ER 878. See William Thompson and Richard Hale, ‘Surplus Income of a Lunatic’ (1894) 8 Harvard Law Review 472, 474–475. The authors then trace the application of Lord Eldon’s principle in later cases. See also R Croucher, ‘“An Interventionist, Paternalistic Jurisdiction”? The Place of Statutory Wills in Australian Succession Law’ (2009) 32 University of New South Wales Law Journal 674.
[32] See, eg, Rosalind Croucher, ‘The Concept of Moral Duty in the Law of Family Provision—A Gloss or Critical Understanding?’ (1999) 5 Australian Journal of Legal History 5.
[33] See Louise Harmon, ‘Falling off the Vine: Legal Fictions and the Doctrine of Substituted Judgment’ [1990] Yale Law Journal 1, 22.
[34] 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 [29](b). Emphasis added.
[35] See, eg, Mental Health Act 2014 (Vic) s 71(3) concerning treatment decisions for patients who either do not have capacity to give informed consent, or who do not give informed consent. See also Mental Capacity Act 2005 (UK) s 1(6); Adult Guardianship and Trusteeship Act 2008 (Alberta) cA4.2, s 2(c); NSW Trustee and Guardian Act s 39(b).
[36] Disability Report, Rec 3–4, first part. Emphasis added.
[37] Disability Report, Rec 3–2, 2(d).
[38] The classical conceptualisation of autonomy, by John Stuart Mill, recognised some limit—that it may be limited in order ‘to prevent harm to others’: John Stuart Mill, On Liberty (London, 1859) in John Gray (ed) On Liberty and Other Essays (Oxford University Press, 1991) 14.
[39] AGAC, Submission 91. See also Centre for Disability Law and Policy NUI Galway, Submission 130.
[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 [22]. In the Disability Report we reflected this idea in the Support Guidelines, in para 2(d).
[41] Rec 10–1.
[42] https://www.alrc.gov.au/news-media/speech-presentation-article/launch-equality-capacity-and-disability-commonwealth-laws-nsw.
[43] As well as to the recommendations of the Senate Standing Committee on Community Affairs report on violence, abuse and neglect against people with disability (2015) and the Commonwealth House of Representatives report, Older People and the Law (2007): https://www.alrc.gov.au/inquiries/elder-abuse/terms-reference.
[44] Family Violence — A National Legal Response (ALRC Report 114, 2010).
[45] Access All Ages—Older Workers and Commonwealth Laws (ALRC Report 120, 2013).
[46] Available at <www.alrc.gov.au/publications/elder-abuse>. An enewsletter for the inquiry was also released at the same time: <http://us1.campaign-archive1.com/?u=0ac682945224f85fa1d89d148&id=b2cb656eb9>.
[47] Issues paper, [147].
[48] Ibid, [148].
[49] 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].
[50] Banks v Goodfellow (1870) LR 5 QB 549.
[51] 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.
[52] 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.
[53] Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) rec 27(e).
[54] Mental Capacity Act 2005 (UK) s 1(3).
[55] Implicating arts 12 and 13 of the CRPD.
[56] 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].
[57] 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).
[58] Seniors Rights Service, Submission 169.
[59] Professor Susan Kurrle, Submission 121.
[60] ARNLA, Submission 90.
[61] Uniting Care Australia, Submission 162.
[62] The speech is at www.alrc.gov.au/news-media/speech/disability_launch_Kayess.