AGAC 2016 National Conference, 18 October 2016, Rosalind F Croucher*
Transcript
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]
The central point of the inquiry was the equal recognition of people with disability as persons before the law and their ability to exercise legal capacity. Our Terms of Reference asked us to examine laws and legal frameworks within the Commonwealth jurisdiction that denied or diminished this equal recognition, and to recommend what, if any, changes could be made.
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:
Principle 1: The equal right to make decisions
All adults have an equal right to make decisions that affect their lives and to have those decisions respected.
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:
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.
Principle 3: Will, preferences and rights
The will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.
Principle 4: Safeguards
Laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require decision-making support, including to prevent abuse and undue influence.
What is central to these principles is a shift away from ‘substitute decision-making’ to ‘supported decision-making’, embracing the paradigm shift embodied in the CRPD. There is an important distinction between supported and substitute decision-making; but it also a point about which much confusion has arisen.
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):
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
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’.
Supporters and Representatives
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:
(1) Supported decision-making
(a) In assisting a person who requires decision-making support to make decisions, a person chosen by them as supporter must:
(i) support the person to express their will and preferences; and
(ii) assist the person to develop their own decision-making ability.
(b) …
(2) Representative decision-making
Where a representative is appointed to make decisions for a person who requires decision-making support:
(a) The person’s will and preferences must be given effect.
(b) Where the person’s current will and preferences cannot be determined, the representative must give effect to what the person would likely want, based on all the information available, including by consulting with family members, carers and other significant people in their life.
(c) If it is not possible to determine what the person would likely want, the representative must act to promote and uphold the person’s human rights and act in the way least restrictive of those rights.
(d) A representative may override the person’s will and preferences only where necessary to prevent harm.
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.
The kinds of human rights encompassed by the Guideline include the various matters set out in the CRPD, including:
- respect for inherent dignity—preamble and art 3;
- non-discrimination—art 5;
- liberty and security—art 14;
- freedom from torture or cruel, inhuman or degrading treatment or punishment—art 15;
- physical and mental integrity—art 17;
- liberty of movement—art 18;
- independent living—art 19;
- respect for privacy—art 22;
- respect for home and family—art 23; and
- participation in political and public life—art 29.
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.
(1) General
Safeguards should ensure that interventions for persons who require decision-making support are:
(a) the least restrictive of the person’s human rights;
(b) subject to appeal; and
(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]
Making it work
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.
We must then consider what new laws in this area might look like, or in fact, perhaps even more controversially, whether they should exist at all.
Consultation with disability advocates and the wider community will be critical to any future success in the task of law making in this challenging area of the law.
Public Guardians, Public Advocates, Guardianship Tribunals and Public Trustees will need to work together and with their respective communities, to refine their views about the reform of their respective state and territory laws while ensuring national consistency.
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.
The Elder Abuse Inquiry
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.
In the Elder Abuse Inquiry, we have been asked to consider existing Commonwealth laws and frameworks which seek to safeguard and protect older persons from misuse or abuse by formal and informal carers, supporters, representatives and others. These should include, but not be limited to, regulation of:
- financial institutions
- superannuation
- social security
- living and care arrangements, and
- health.
We have also been asked to examine the interaction and relationship of these laws with state and territory laws. This clearly takes us into the realm of guardianship and administration; and into laws dealing with ‘private’ appointments of substitutes through enduring powers of attorney.
The two key principles informing the Inquiry are expressed in the Terms of Reference as:
- the principle that all Australians have rights, which do not diminish with age, to live dignified, self-determined lives, free from exploitation, violence and abuse; and
- the principle that laws and legal frameworks should provide appropriate protections and safeguards for older Australians, while minimising interference with the rights and preferences of the person.
These ideas may be expressed on the one hand as a principle that focuses upon autonomy; on the other, one that focuses on protection. The ALRC is also to have regard to relevant international obligations relating to the rights of older people under United Nations human rights conventions to which Australia is a party. Where the Disability Inquiry had strongly embodied the first of these principles; the Elder Abuse Inquiry draws us firmly towards the second, with its focus on safeguards and protections. This is also reflected in the title of the Terms of Reference: ‘Protecting the Rights of Older Australians from Abuse’. The challenge is to find an appropriate protective and safeguarding response in laws and legal frameworks without abandoning the emphasis on rights—and particularly as expressed as the ‘will and preferences’ of the older person.
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.
There are many case studies that can be drawn upon to gain an understanding of the elder abuse landscape. I include, for this purpose, examples from the submissions and other literature, including the 2016 study by the Australian Institute of Family Studies (AIFS), ‘Elder Abuse: Understanding Issues, Frameworks and Responses’, commissioned as part of the background to the ALRC inquiry.
There are distinct themes: the prevalence of financial abuse—often involving misuse of powers of attorney; the appointment of guardians without considering or against the wishes of the person; decisions about aged care being made with little or no regard to the wishes of the person. For example, using calls to the Queensland elder abuse hotline as a principal source of information, the AIFS study identified financial abuse as accounting for 40% of the most commonly reported type of abuse in 2014–15; and children in their 50s as the largest group of offenders.
The appointment of substitute decision makers through private instruments attracts a range of issues and are perhaps more troubling in the case studies than formally appointed, independent substitutes. In the submissions and the consultations undertaken so far, there are many examples of complaints about privately appointed attorneys, including issues such as: lack of accountability; ‘asset stripping’; enduring powers of attorney as ‘licences to steal’; the familial nature of abuse; inaccessibility of the supreme court (to pursue equitable remedies, regarding property transactions that have fallen apart, in particular). But, on the other hand, there is a clear recognition that enduring powers of attorney have a vital role to play in supporting older persons with declining abilities; similarly with respect to family agreements concerning property (collectively dubbed by Centrelink as ‘granny flat’ interests).
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:
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.
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.
And another
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.
I don’t pretend that this is easy.
Tribunal-appointed substitutes are subject to considerable scrutiny; and guardianship laws contain a range of accountability mechanisms that seek to ensure decision-makers exercise their powers appropriately. Tribunals have responsibility for overseeing the activities of decision-makers by reviewing guardianship and administration orders, assisted by Public Advocates or Public Guardians.
Guardians and administrators may be subject to statutory or requested tribunal reassessments of their appointments. Administrators are usually required to lodge a financial statement and plan, detailing how the represented person’s estate will be managed, as well as annual reporting. Public guardians or administrators are also accountable for their activities to their employers.
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.
In the arena of privately appointed substitutes, through enduring powers of attorney and enduring guardians, there is considerable room for improvement before the normative change to a will and preferences approach will be in evidence. Some of this, perhaps, is about not understanding precisely what the extent, and limits, of the role is.
Attorneys under power, guardians and financial administrators are all fiduciary positions. In equity the obligations are very clear: no mixing of monies; no conflict of interest transactions (ie don’t benefit oneself); all transactions for the benefit of the person; accountability through tracing. Does this happen scrupulously in practice? Judging from the case studies we have received, clearly not, at least in the area of private individuals acting.
Seniors Rights Service provided a list of examples of types of financial abuse that have been brought to their notice:
- An attorney uses the older person’s funds and spends the money on themselves;
- The attorney lives in the older person’s home and obtains a benefit but does not pay market rent;
- The attorney enters into a conflict transaction where they themselves benefit (they pay themselves for the care provided to the older person or they mortgage the older person’s home and keep the proceeds);
- The attorney breaches the conditions of the enduring power of attorney;
- The attorney mixes the funds of the attorney and the older person (such as placing the funds of the older person in a joint account) once the older person loses capacity;
- An attorney taking money from bank accounts and through an ATM and spending the funds on themselves.[58]
We have heard many stories of siblings accusing siblings of wrongdoing. (And of course it is very easy to criticise from the other side of the fence). Evil step-mothers, wicked sons, greedy brothers. It’s like inheritance fights played out in advance. Indeed, ‘inheritance impatience’ is an expression that is apt to describe a number of the examples we have been given. (But there are also the angel sons and angel daughters, so we must not forget them).
Sometimes they are arrangements that start off in a good place but end up seriously derailed if issues like dementia run their course. I’m thinking here of ‘family agreements’ involving promises to care in exchange for property, or ‘granny flat’ arrangements as Centrelink calls them. What do you do when things go ‘pear-shaped’?
Many property issues, if they were to be litigated, would require hearings by a court with equitable jurisdiction, as many of the somewhat loose arrangements would struggle to be proved as contracts, either because of the vagueness or uncertainly of the promises involved, or because of lack of writing. And who wants to sue their kids—especially if it means that you are likely to lose contact with your grandchildren.
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]
Would a more informal process help? A jurisdiction that allowed compensation without equity litigation, in relation to property issues and also powers of attorney? Compulsory conferencing? QCAT and VCAT have some jurisdiction along these lines.
So what can the ALRC do? The first message is that we can’t do it alone. Consultation is at the heart of our processes and we are now moving into the next crucial stage of the Elder Abuse Inquiry with the release of the Discussion Paper, scheduled for 12 December. Then we will be conducting a further round of consultations, particularly in the latter part of January and through February, leading up to the close of submissions at the end of that month. Do, please, continue your involvement.
Practically, we are looking at a range of things, to ‘frontload’ understandings as much as possible, to improve complaint handling mechanisms, but at the same time ensuring that the older person is supported in protecting their rights. We need to respond to the plea that runs through many of the personal submissions, of ‘someone’s got to do something!’ But at the same time, overzealousness has to be resisted, otherwise it pushes the balance between the principles too much to the ‘protective’ side. Perhaps where ‘dignity of risk’ was a theme in the Disability Inquiry, ‘dignity in decline’ is one we need to embrace in the Elder Abuse Inquiry.
To conclude, I would like to quote remarks made by Rosemary Kayess, in speaking at the launch of the Disability Report. While she was speaking about people with disability, her remarks are equally apposite for older people, especially those with increased or increasing cognitive impairment:
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]
Rosemary suggests what is necessary for the ideas expressed in the Disability Report to be made to work. Disability, and ageing are part of human diversity. We are making solid strides in understanding this in relation to people with disability. Older people, with or without disability, need to be embraced in a similar way.
Appendix: United Nations Convention on the Rights of Persons with Disabilities
Article 12, ‘Equal recognition before the law’
1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
5. Subject to the provisions of this article, States Parties shall 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.
* 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.
[12] Ibid. Emphasis added.
[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.
[26] Ibid.
[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.
[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.
When: | 11 Aug 2015, 4:30pm – 6.30pm |
Venue: | SMC Conference & Function Centre, 66 Goulburn St, Sydney |
Who: | Social Policy Research Centre |
This house believes that with sufficient support, people with disability should never be required to have a substitute decision maker
The United Nations Convention on the Rights of Persons with Disabilities challenges the current legal assumption that sometimes supported decision making for people with disability must be replaced with substitute decision making because some people do not have capacity to make a decision, even with unlimited support. Is it feasible to change the way we think about supported decision making? The Australian Law Reform Commission’s recent report, Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), is the first internationally to unpack that question. Some disability advocates think the Commission’s report does not go far enough because it still identifies when a substitute decision maker is required.
Moderator
Gerard Quinn
For
Anna Arstein-Kerslake & Rosemary Kayess
Against
Rosalind Croucher & Carmelle Peisah
Participants
Professor Gerard Quinn is the Director of the Centre for Disability Law and Policy at the School of Law and Visiting Professor at UNSW. He is a leading authority on international and comparative disability law and policy and is a professor of law at National University of Ireland Galway.
Dr Anna Arstein-Kerslake is the Academic Convenor of the Disability Research Initiative at the University of Melbourne. She is also the Director of the Disability Human Rights Clinic at Melbourne Law School. Her research focuses on the human rights of persons with disabilities, especially the rights to equal recognition before the law and legal capacity. She provided support to the United Nations Committee on the Rights of Persons with Disability in creating their General Comment on the right to legal capacity.
Rosemary Kayess co-directs the disability and human rights project at the Australian Human Rights Centre, Faculty of Law and is a researcher at the Social Policy Research Centre UNSW. She was the external expert on the Australian Government delegation to the United Nations negotiations for the Convention on the Rights of Persons with Disabilities
Professor Rosalind Croucher AM is President of the Australian Law Reform Commission and the Commissioner that led the ALRC’s world leading investigation into capacity, published last year – Equality, Capacity and Disability in Commonwealth Laws.
Dr Carmelle Peisah is an Old Age Psychiatrist and Conjoint Associate Professor in School of Psychiatry, Faculty of Medicine UNSW. She is president of Capacity Australia and has written
Reception:4.30pm-5.00pm
Debate: 5.00pm-6.00pm
Refreshments: 6.00pm-6.30pm
This is a free event but space is limited. RSVPs are essential. Please register to attend.
Auslan interpreters will be present.
If you have any special requirements, please contact the (02) 9385 7800 or sprc@unsw.edu.au
Graeme Smith, NSW Public Guardian presentation, at the launch of ALRC Final Report Equality, Capacity and Disability in Commonwealth laws in Sydney on 11 December 2014.
I congratulate the ALRC on the publication of this report.
I would also like to thank Ros Croucher for the opportunity to make a few comments on the importance of this report to those of us working in the area of guardianship and financial administration.
Guardianship and financial administration agencies have been eagerly awaiting the Australian Law Reform Commission’s final report and recommendations.
Of course we do not know yet what the Commonwealth Governments response to the report will be. However, we do know that contained in the report is a recommendation that the Commonwealth engage with the States and Territories in a process of law reform to ensure a nationally consistent approach to guardianship and administration laws that align with the ALRC’s recommendations.
Guardianship laws in Australia were introduced as a way to enable social participation by people with decision-making impairment and as a way of providing protection against abuse, neglect and exploitation. Certainly in this country, these laws are only ever intended to be used as a last resort where all other options have been exhausted.
The ALRC report emphasises the need for the provision of support for those people who may need support to exercise their legal capacity.
But such concepts only have meaning where there are genuine alternatives to guardianship and administration available and where a sense of equality of decision making rights is alive in the community.
The Commission’s report brings a national focus to the issue of equality, capacity and disability. The number and range of submissions made to the Commission indicates an enthusiasm for better support and more options for people with disability.
The report introduces the concepts of support and representation to the wider community with a reminder that the provision of support for decision making is a social responsibility.
This report explores the concept of supported decision making in some depth. However, we know that much work is necessary to ensure that we have a detailed knowledge about how supported decision making can be effective in enabling a person to exercise their legal capacity and can be provided to those people who need support, when they need support.
A viable community based infra-structure within which support can be readily obtained must be considered by all governments at all levels as part of the process of law reform.
The Public Guardian together with the NSW Trustee and Guardian and ADHC in NSW, along with Public Advocates in Victoria, South Australia and Queensland have been exploring the concept of supported decision making over the past 4 years and have designed and participated in state based trials, pilots and research on the issue.
So the need for law reform in relation guardianship and administration laws has been very much anticipated by the States and Territories and the tabling of this report brings that anticipation much closer to reality.
We know for example that identifying the will and preference of people with very complex communication needs and social relationships can be challenging and requires new thinking and new approaches. The Commission’s report offers us some clear guidance in the form of the National Decision-Making Principles and Guidelines. The guidelines set a clear pathway to help us, and others, work through issues of support, will and preference, rights and safeguards.
The Commission’s report provides recommendations concerning the need for reform of existing guardianship and administration laws at the state and territory level of government and offers some guidance for law reform that should now be pursued.
Law reform in this space will be complex. Article 12 of the Convention on the Rights of Persons with Disability is perhaps the most controversial element of the Convention. It has generated an enormous amount of discourse amongst legal and other academics which has resulted in a substantial variety of views as to its exact interpretation.
Many of those views have been canvassed in the submissions to the ALRC and subsequently captured well by the discussion contained in the ALRC’s final report.
Ensuring that people retain their legal capacity, and ensuring that people, when needed, are able to access the support they need to ensure that they can exercise their legal capacity presents law makers with a significant challenge in the immediate future.
Within the context of current and historical thinking, laws which provide for the appointment of a substitute decision maker seem difficult to reconcile with the notion that a person retains their legal capacity even when their decision making ability is diminished as a result of a significant cognitive impairment.
It is quite likely therefore that the recommendation concerning the appointment of representatives contained in this report will continue to generate a lot of debate amongst lawyers, academics and the wider community.
Guardianship laws in Australia at the present time represent, to some extent, the codification of centuries of Parens Patriae law.
While we must understand this history, 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.
We must then consider what new laws in this area might look like, or in fact, perhaps even more controversially, whether they should exist at all.
Consultation with disability advocates and the wider community will be critical to any future success in the task of law making in this challenging area of the law.
Public Guardians, Public Advocates, Guardianship Tribunals and Public Trustees will need to work together and with their respective communities, to refine their views about the reform of their respective state and territory laws while ensuring national consistency.
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.
Thank you.
Introduction and welcome
Good morning and welcome to this important event. I am Professor Rosalind Croucher, President of the Australian Law Reform Commission, and it is my very great privilege to commence the proceedings.
I warmly welcome:
- Evan Lewis from the Department of Social Services, attending on behalf of Senator the Hon Mitch Fifield, Assistant Minister for Social Services, who sends his apologies
- the Hon Mark Dreyfus QC MP, Shadow Attorney-General (who provided the Terms of Reference for the inquiry)
- the Hon Jenny Macklin MP, Shadow Minister for Disability Reform
- Professor Gillian Triggs of the Human Rights Commission
- the Hon Justice Robertson Wright, President of the NSW Civil and Administrative Tribunal
- Graeme Inness AM, part-time Commissioner for the inquiry
- members of the Advisory Committee for the inquiry
- ALRC colleagues – the Disability team, and
- all of you here who assisted us so willingly and well in the inquiry
Welcome all!
In the presence of such eminent guests may 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.
And now to the occasion of today — to launch the Australian Law Reform Commission’s 124th report, Equality, Capacity and Disability in Commonwealth Laws.
The Law Reform Brief
The equal recognition of people with disability as persons before the law and their ability to exercise legal capacity was the central point of the inquiry. Our Terms of Reference asked us to examine laws and legal frameworks within the Commonwealth jurisdiction that denied or diminished this equal recognition, and to recommend what, if any, changes could be made.
We were asked to consider ‘how maximising individual autonomy and independence could be modelled in Commonwealth laws and legal frameworks’. 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. Providing a model in Commonwealth laws that could lead the way for state and territory reforms would therefore be the most sensible use of ALRC expertise and resources. The report makes 55 recommendations for reform.
We started work in July 2013, the same month in which a pilot of the National Disability Insurance Scheme (NDIS) in Australia commenced. Very much in the national mind was also the role that Australia had played in the international arena as one of the initial signatories to the Convention on the Rights of People with Disabilities —the ‘DisCo’, as Graeme Innes calls it.
The law reform response
What became clear in this inquiry is that we needed to find new language and new priorities. We provided answers on both fronts.
First: A new lexicon
As a legal historian I had observed a number of significant shifts in language in my own studies in inheritance law. Like the language dealing with children born out of wedlock: from ‘bastards’ in the 13th century, to ‘illegitimate’ to ‘ex-nuptial’ in the 1970s, the language concerning disability has shifted significantly over time, for example:
- the distinction between ‘lunatics’ and ‘idiots’ in William Blackstone’s day in the mid-18th century;
- the language of ‘unsound mind’ of the early 20th century, as evident for example in the Commonwealth Electoral Act 1918 (Cth);
- the use of the terms ‘mentally retarded persons’ and ‘disabled persons’ in United Nations Declarations of 1971 and 1975; and
- ‘persons with disabilities’ in the CRPD in 2007.
When the ALRC did some work on guardianship in the 1980s, the report said, succinctly:
There is a problem of language when dealing with people with disabilities.
People with disability have tackled this language problem in a myriad of ways. The incomparable Stella Young, who so sadly passed away this week so unexpectedly, had her own particular take on language. In her letter to herself as an 80 year old, she spoke of herself as a disabled woman and a ‘crip’—something she said horrified people. But for her it was about ‘owning’ her own labels. About feeling proud. About feeling strong and powerful.
I was the 1,484,173rd to watch the YouTube clip of her TEDX talk filmed in April this year. Stella’s powerful message was against objectifying disability. That she was not wrong for the world she lived in — the world she lived in was not yet right for her. What she hoped was that, by the time she was 80, she would have written things that change the way people think about disability. I think we all acknowledge that even by the time Stella had reached her 32 years, she had already gone a long way to achieving this. I know many of you knew and worked with Stella and I offer you the ALRC’s sincerest condolences on this great loss.
The ALRC, too, through this inquiry and all the contributions made by so many people, hopes to contribute to changing the way that people think about disability.
First, we sought to move the language from terminology that reflected previous times. Consistent with the approach identified by the ALRC in 1989, it was clear that words and terms should not be used that tend to lower the dignity of people with disabilities. We also sought to place the emphasis in law, and in language, on support.
What words had to go? ‘Unsound mind’ for starters — and we have a specific recommendation about getting rid of this remnant phrase in the Commonwealth Electoral Act. Old words like ‘guardian’ should go too. Where we could suggest a model, as we have done in Commonwealth laws, we use the terms ‘supporter’ and ‘representative’. Our 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.
Second: New priorities
Law has always started with a presumption of capacity: that people should be assumed to be capable of making decisions and acting. This is a good thing in law and is, not surprisingly, the starting point of much recent work on capacity. But in this report we concluded that we had to go further to articulate the paradigm shift evident in the language of, and discourse around, the UN Convention. Here I acknowledge especially our Advisory Committee in working through the conceptual implications of this for us and in reaching the conclusion that it was necessary to place the emphasis on the right of citizens to make decisions, rather than on the qualification intrinsic in a presumption. The conceptual difficulty in starting with a presumption of legal capacity as an overarching principle is that it already contains a binary classification—of those who have legal capacity, and those who do not. It is echoed in words that Stella used, about the world she lived in being wrong for her, not the other way round.
We did not say that legal agency may never be found to be lacking; nor is it meant to suggest that a person may never be appointed to act on behalf of another in making decisions. But as a starting point as a matter of principle we decided that we had to start from the right, not a presumption. The key element in equal recognition, as understood in the CRPD and the discourse that has developed around it, is the embracing of a supported decision-making paradigm so that persons with disability are acknowledged as having the right to make decisions on an equal basis with others and are supported in exercising that right.
The new priorities are expressed in terms of National Decision-Making Principles and guidelines that can be used as a template for specific reforms. The four general principles reflect the key ideas and values upon which the ALRC’s approach is based. They 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.
Principle 1: The equal right to make decisions
All adults have an equal right to make decisions that affect their lives and to have those decisions respected.
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.
Principle 3: Will, preferences and rights
The will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.
Principle 4: Safeguards
Laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require decision-making support, including to prevent abuse and undue influence.
Key to the principles is the paradigm shift signalled in the UN Convention away from ‘best interests’ decision-making to a focus on ‘wills, preferences and rights’, particularly in the context of when another may be needed to act.
It is important that when people with disability are supported to make decisions, or have decisions made for them, it is their wishes and preferences that drive those decisions—not other people’s ideas about their best interests. And even when another person is appointed to act for us, that person must act as our representative. The change to ‘representative’ also reflects the central change that is critical to the whole report, in that the way that person has to act is as a representative: a representative of you, to act according to your will and preferences
As to the intersections between federal and state systems, there should be a presumption that an existing state or territory appointed decision-maker should be appointed, eg, as the representative for NDIS purposes.
Development of the reform response
In developing a reform response we talk to a lot of people. We listen to a lot of people. And a lot of people put in submissions. Commitment to widespread consultation is a hallmark of best practice law reform—and this inquiry was no exception. We received more than 150 submissions and undertook two national rounds of stakeholder consultation meetings, forums and roundtables.
Thank yous
An inquiry such as this requires many thank yous.
First, I must single out the wonderful work of the team: the legal officers of the ALRC—Bruce Alston, Amanda Alford, Khanh Hoang, Sonya Kim; the production team, under the leadership of ALRC Executive Director Sabina Wynn with Tina O’Brien once again providing key support as Project Coordinator and typesetting everything under the sun, Trisha Manning, designed the cover; and Marie-Claire Muir—our one-woman website ‘team’.
Our part-time Commissioners: the Hon Justice Berna Collier (until October 2013) and Graeme Innes AM.
Our Advisory Committee—many of whom are here today and two of whom are speaking (Graeme Smith and Rosemary Kayess). May I acknowledge also Emeritus Professor Terry Carney who has been on a number of Advisory Committees for the ALRC and always contributes so willingly and graciously his expertise to our work — and those of others. Both on advisory committees and as an expert reader, his contributions are invaluable.
And a huge vote of thanks to all those with whom we consulted, all over the country; and to those who put in submissions. The depth of engagement reflected in this process of consultation is the hallmark of best practice law reform and the ability of governments to implement them. Many of those stakeholders have been with us now for several inquiries.
Everyone here today has played a part.
Thank you all!
Next speakers
I am delighted now to introduce three speakers to speak about the report, as esteemed members of the Advisory Committee:
First: Rosemary Kayess, Director, Human Rights and Disability Project, Australian Human Rights Centre, Faculty of Law, UNSW and Chairperson of the Australian Centre for Disability Law;
Second: Graeme Smith, New South Wales Public Guardian
Third: the incomparable Graeme Innes, who will also officially launch the report.
The ALRC formally launched its final report for the Disability Inquiry, Equality, Capacity and Disability in Commonwealth Laws (ALRC 124) on Thursday 11 December 2014, in Sydney.
The launch was attended by Evan Lewis, on behalf of Senator the Hon Mitch Fifield; the Hon Mark Dreyfus QC, MP; the Hon Jenny Macklin MP, members of the Inquiry’s Advisory Committee, and a range of stakeholders and Inquiry participants.
ALRC President and Commissioner leading the Inquiry, Professor Rosalind Croucher, opened the launch and provided an outline of the Report and its key recommendations.
Rosemary Kayess, Director of the Human Rights and Disability Projects at the Human Rights Centre, Faculty of Law, UNSW, Chairperson of the Australian Centre for Disability Law and member of the Inquiry’s Advisory Committee, spoke about the recognition of disability as part of human diversity.
Graeme Smith, Public Guardian, NSW Department of Justice spoke about the importance of the Report to those working in the area of guardianship and financial administration.
Graeme Innes AM, Part-time Commissioner on the Disability Inquiry, also gave a speech.
Photo 1: The Hon Mark Dreyfus QC, MP; Professor Rosalind Croucher; Graeme Innes AM; the Hon Jenny Macklin MP
Photo 2: Graeme Innes AM, Professor Rosalind Croucher; Rosemary Kayess, Graeme Smith and Emeritus Professor Terry Carney
Rosemary Kayes, Director of the Human Rights and Disability Projects at the Humand Rights Centre, UNSW Law, and member of the Inquiry’s Advisory Committee, speaking at the launch of final report, Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), in Sydney on Thursday 11 December 2014.
I’d like to acknowledge the traditional owners of the land on which we meet: the Gadigal people of the Eora nation. I pay my respect to their elders past and present.
The experience for people with disability is one of separate and segregated, much of this has come about under the guise of care, treatment and protection. Society’s approach to disability has been to create separate parallel systems for people with disability without challenging the existing system, without challenging the narrow preconceived notions of how people in society should function and how systems should operate. We define people in terms of deficit and lack without challenging the systems and their responsiveness to diversify.
This has been evident in the denial of legal capacity through legislation such as guardianship, unsound mind provisions, coercive mental health provisions and justice diversion such as unfit to plea. These provisions have, under the guise of protection, resulted in what the commentators have called “a civil death” for many people. A divorce from the civil world. An isolation from civil functions such as finance, governance, voting, even marriage. These provisions have been the basis for some of the most egregious human rights violations. These processes that by design, implementation or lack of resources have meant people with disability have been isolated from key decision making or life opportunities denying them participation not just in the community but in their own lives.
In recent years there has been a move away from the paternalism of care treatment and protection and a call for a human rights approach as enshrined in the Convention on the Rights of Persons with Disabilities. A central theme to the convention on the rights of persons with disability is the recognition of disability as part of human diversity. Recognition of disability as just another aspect of the human spectrum and that inclusion requires the means by which society operates, to be inclusive and accessible by all. The other fundamental achievement of CRPD is that it quite symbolically establishes people with disability as subjects of rights, according them with both the holding of rights and the capacity to act on those rights. Without the recognition of legal capacity these are hollow rights.
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.
Transcript
Sabina Wynn (SW): Hello I’m Sabina Wynn, the Executive Director of the Australian Law Reform Commission and I’m here with the Commission’s President, Professor Rosalind Croucher, and Part-time Commissioner Graeme Innes, and we’re going to be talking about the ALRC’s latest report Equality, Capacity and Disability in Commonwealth Laws.
So Ros, what was the ALRC asked to do in this inquiry?
Rosalind Croucher (RC): Sabina, it was a very challenging inquiry and our brief was specifically to look at laws and legal frameworks within the Commonwealth jurisdiction that deny or diminish the equal recognition of people with disability as persons before the law and their ability to exercise legal capacity. We were asked to find what changes we could make at the Commonwealth level, how we could maximise individual autonomy and independence in Commonwealth laws. This comes directly out of the UN Convention on the Rights of Persons with Disability or, as Graeme calls it, the ‘DISCO’, and it also emerged in the wake of the launch of the pilot of the National Disability Insurance Scheme in 2013.
SW: So what are the key recommendations the ALRC is making?
RC: The set of recommendations seek to embody a supported decision-making paradigm in Commonwealth laws. How we did that was to propose four very high-level national decision-making principles with a set of three guidelines and they capture the essential ideas and commitments of the UN Convention. We see that they will provide the template for reforms in specific areas of Commonwealth jurisdiction but might also act as a catalyst for reform at the state and territory level.
SW: You mentioned the national decision-making principles, so what exactly are they?
RC: Sabina, they are four principles that are, first of all, the equal right to make decisions, and this places front and centre the idea that all adults have an equal right to make decisions that affect their lives and to have those decisions respected.
The second of the principles is the central one in the UN Convention which is support—that 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.
The third principle, and this is really the essential paradigm shift, is one that we’ve labelled ‘will, preferences and rights’ and this principle expresses that the will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.
The fourth principle is a safeguards principle, also central to the UN Convention, that laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require support, including to prevent abuse and undue influence.
SW: Graeme, could you give us an example of how these principles might work in practice?
Graeme Innes (GI): Sure Sabina, in fact I’d like to give you a couple of examples. The first one is about a young man named Joel and he’s a 20-year-old with intellectual disability who wants to move out of the family home, as do many others of that age. His parents have supported him all his life and they would continue to do that but the decisions that he makes about where he lives, in the new model, would be his own decisions supported by his parents and others from whom he might choose to get support rather than, in the current model, decisions which might be made for him or on his behalf.
The second example is an older woman, Sheila, who has Alzheimer’s. She has for the last five years given each of her nieces and nephews, five nieces and nephews, $1,000 on their birthday. Now, her representative—because sadly her Alzheimer’s has progressed to the extent where she is no longer able to make decisions even though they’re supported decisions, and so a representative has had to be appointed and that is her son—may under the current model have stopped this giving and keep that money for her support and accommodation based on her best interests because that’s the current test that applies. But now her will and preferences under the new model, if it’s adopted by Government, would be taken into account and the giving may continue to the nieces and nephews.
SW: Ros, what other key areas has the ALRC made recommendations in?
RC: Sabina, we’ve made specific recommendations in areas of Commonwealth jurisdiction, so what we’ve targeted here are things like the National Disability Insurance Scheme, as well as areas such as social security, the aged care arena and also e-health records and privacy. In each of those areas we’ve sought to apply a model of decision-making that uses the principles as the backdrop and also uses new language to refer to the roles of supporters and also the role of a representative who may be a person who is appointed, as last resort, to provide the support that the person might need in decision-making.
GI: But this model, of course, could be used as a model for state and territory laws and I’m hopeful that state governments will turn to this model when they review their guardianship and related processes and I’m hopeful that we’ve provided a model for disability organisations to advocate for, which is in compliance with the Disability Conventio, or the DISCO, principles.
SW: Ros, you’ve called this new approach a paradigm shift in the way that people with disability are able to make decisions, can you just explain what you actually mean by a paradigm shift?
RC: Yes, it’s absolutely key to any reform in the area of decision-making and recognition of people with disabilities as having equal rights in the area of decision-making that the model shifts. Rather than focusing on what is perceived as being in the objective best interests of a person, as Graeme mentioned is the current standard in many areas, rather than using a best interests model, the lens has to move very strongly and centrally on the person themselves so they are supported to the greatest extent possible in making decisions for themselves. The paradigm shift is both from best interests to will and preferences, but it also is a shift in language.
We thought throughout that language is a problem, it’s a recurring theme in discussions about people with disability so we’ve sought to come up with what we’ve described as a new lexicon where we’ve created distance from the paternalistic language—which was conceived as being in the interests of people but has now become outdated, so language like ‘unsound mind’ which still appears in some provisions like the Commonwealth Electoral Act and also away from the language of guardianship which, as Graeme reflected, is anchored in state and territory law—and come up with language of supporter and representative.
So that the paradigm shift is both in terms of the standard by which decision-making takes place—that is through the will and preferences of the person—and also in the language that we’ve developed to reflect that new model.
GI: This really plays out in practical terms by following through the change which is given momentum by things like the Disability Discrimination Act, the DISCO (the Disability Convention) and the National Disability Insurance Scheme. Language is one of the things that really limits people with disabilities from being equally included in society and so we’ve tried to address some of that language, as Ros said, but for people with disabilities what we want is a chance to just be agents of our own destiny and to live our own lives in the community and as participating members of the community.
You can’t do that if you have a model which allows for decisions to be made about us and in our best interests. We need to move to a model which allows us to maximise the opportunities to make decisions, to provide support for those decisions as we’re making them, where that’s needed, and to provide appropriate safeguards. That’s what we’ve tried to do with this model.
SW: So during the course of this inquiry the ALRC produced two consultation papers, we conducted around 100 consultations all over the country including in several regional areas and we received over 150 submissions, so there was widespread consultation with a lot of diverse people and we also had an Advisory Committee.
GI: I think it’s important, Sabina, to thank those stakeholders who participated, the members of the Advisory Committee who were across the range of people from government and bodies administering the sorts of decision-making processes that we currently have, people from academic areas and people from the disability sector. That actually reflects the broader consultations because we moved around a lot, as you say, in Australia and visited a whole range of people with disabilities as well as visiting other organisations who operate in this area and it’s important to recognise their contribution and the value that they’ve brought to the report in terms of giving us some real life experiences to support the legal concepts which we are proposing to change.
SW: So Ros, what happens now?
RC: Thank you Sabina, what happens now, and this is the case with all ALRC reports, once we’ve finished our work we deliver our report to the Attorney-General and under our Act the Attorney must table our reports in Parliament within 15 sitting days, so that will happen within up to 2-3 months, usually after a report but now I’m delighted that the ALRC report has been tabled and we look forward to implementation. Even if the specific recommendations take a while to implement, through the fantastic involvement of so many stakeholders, I think we’ve started a very significant conversation around real possibility for reform across the disability sector and, like Graeme, I thank everybody for their willing and enthusiastic involvement in another very challenging and rewarding inquiry.
SW: I just wanted to finish this conversation by reminding people that we have also produced the final report as an Easy English version which is available on the website. Thank you.
GI: Thanks Sabina.
RC: Thank you.
We are pleased to announce the release of the Final Report for this Inquiry, Equality, Capacity and Disability in Commonwealth Laws (ALRC 124). The Report was tabled in Parliament today and is now available to the public.
The Report is available in HTML, PDF, and as an ebook.
- See media release >>
- See Final Report >>
- See Summary Report >>
- Download a summary of the Report in Easy English (PDF) >>
Professor Rosalind Croucher, ALRC President and Commissioner leading the Inquiry, and Graeme Innes AM, part-time ALRC Commissioner assisting the Inquiry team, recorded a podcast in which they discuss some of the key recommendations in the Final Report and what, if implemented, they will mean for the disability community.
Thank You!
We’d like to thank everybody who has helped the ALRC in developing our recommendations, whether through consulting with us, making a submission, or simply by maintaining an interest in this Inquiry through your subscription to this enews.
The ALRC would especially like to thank Graeme Innes, for his invaluable experience and assistance to the team, and members of the Advisory Committee, who were so giving of their time and expertise.
What happens now?
As the Final Report is now tabled, this is the last enews we will send for this Inquiry.
The ALRC will formally launch the Report on Thursday 11 December at its offices in Sydney, providing an opportunity to present the Report and its recommendations to the disability community, and to recognise the contribution of everyone involved.
The ALRC’s recommendations do not automatically become law. The Australian Government decides whether to implement the recommendations, in whole or in part, and there is no set time frame in which the Government is required to respond. Implementation of ALRC recommendations is tracked and recorded each year in the ALRC’s Annual Report. We also provide updates about implementation in the ALRC Brief.
The Australian Law Reform Commission’s Final Report Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124), was tabled in Parliament today. The Report makes 55 recommendations for reform that will better provide people with disability equal recognition before the law—in particular, in relation to the right to make decisions that affect their lives and to have those decisions respected.
At the heart of the reforms sit the National Decision-Making Principles, developed by the ALRC to guide reform at a national level. The Principles reflect the paradigm shift signalled in the United Nations Convention on the Rights of People with Disabilities (CRPD) away from ‘best interests’ decision-making to a focus on ‘wills, preferences and rights’.
ALRC President, Professor Rosalind Croucher, Commissioner-in-charge of the Inquiry said, “It is important that when people with disability are supported to make decisions, or have decisions made for them, it is their wishes and preferences that drive those decisions—not other people’s ideas about their best interests. This is the ‘paradigm shift’ at the heart of the UN Convention. The National Decision-Making Principles should inform all areas of the law where people with disability are required to make decisions, whether they are about the NDIS, social security, health or other matters.”
The ALRC has also recommended a new Commonwealth decision-making model that will encourage the adoption of supported decision-making at a national level. The new model 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, or require, someone else to make decisions for them.
Professor Croucher said, “The new Commonwealth decision-making model recognises the ability of people with disability to make decisions for themselves and places the emphasis upon support. It is a model based on principles of dignity, equality, autonomy, inclusion and participation—and accountability.”
Part-time Commissioner for the Inquiry, Graeme Innes AM said, “This Inquiry was an internationally groundbreaking examination of the implications of the UNCRPD for laws and legal frameworks that might disempower people with disability. In adopting the model recommended in the Report and leading its implementation federally, the Australian Government can maintain its leadership in championing and implementing reforms for persons with disability. The ALRC also recommends that this Commonwealth model guide a review of state and territory laws affecting people with disability. In this way the ALRC Report can provide a catalyst towards further initiatives at the state and territory level.”
During the course of the Inquiry, the ALRC produced two consultation papers, received more than 150 submissions and undertook two national rounds of stakeholder consultation meetings, forums and roundtables.
The Report and Summary Report are available from the ALRC website in a range of formats, including as an ebook. All ALRC reports and publications are available free of charge at https://www.alrc.gov.au/publications.
The ALRC has also developed an Easy English version of the Summary Report for people with low English literacy.
Media contact: Marie-Claire Muir (02) 8238 6305, web@alrc.gov.au
Issue 8 | 22 May 2014. View original format.
Discussion Paper released!
We are pleased to announce the release of the Discussion Paper for this Inquiry, Equality, Capacity and Disability in Commonwealth Laws (DP 81).
The Discussion Paper provides a detailed account of ALRC research so far, and includes more than 50 proposals and a number of questions for people to consider and provide feedback on.
The Discussion Paper is available in HTML, PDF, and as an ebook.
ALRC President Professor Rosalind Croucher, who is leading this Inquiry, has recorded a podcast to provide a brief summary of the Discussion Paper.
- See media release >>
- See Discussion Paper >>
- Listen to podcast >>
Call for submissions
We invite individuals and organisations to contribute to the law reform process by making submissions in response to the Discussion Paper. It is helpful if comments address specific proposals and questions, however we also welcome feedback on background material and analysis.
The closing date for submissions is Monday, 30 June 2014.
We prefer to receive submissions via the online form on the ALRC website, but also accept submissions by post and email. Please send any pre-prepared submissions in Word or RTF format.
- Online submission form >>
- Making a submission >>
Easy English Discussion Paper
We have produced an Easy English version of the Discussion Paper. Easy English is more accessible for people who have difficulty reading and understanding written information.
We also have information about the law reform process, about making submissions, and our policy for communication with people with disability in both Easy English and Auslan.
Producing documents in Easy English is relatively new for the ALRC. We would love to hear any thoughts or feedback you have about our documents.