STANDING COMMITTEE ON SOCIAL ISSUESInquiry into substitute decision-making for people lacking

capacity

The Disability Council of NSW provided written and verbal testimony to the NSW Upper House inquiry by the Social Issues Committee into substitute decision-making for people lacking capacity. The Council’s evidence was given in three parts.

1. Introductory remarks to the parliamentary committee by Andrew Buchanan, Chair of the Disability Council of NSW.

2. Written responses to questions from the Committee addressed specifically to the Disability Council of NSW.

3. Written responses to questions addressed to all participants in inquiry hearings.

The Disability Council’s evidence is reproduced below. The Hansard transcript of the Council’s appearance before the Social Issues Committee on 28th September 2009 may be read at the following web location:

http://www.parliament.nsw.gov.au/Prod/parlment/committee.nsf/ 0/6fd687d759dda0f7ca25763f007e2d06/$FILE/090928%20Uncorrected%20transcript.pdf

Andrew Buchanan’s introductory remarks

Good afternoon Chairman.

Thank you for giving us the opportunity to speak to you and members of the

committee today. 

I Chair the Disability Council of NSW, the official advisory body on disability in

this State. It has been my privilege to do so for seven years, providing advice

to four successive Ministers for Disability Services.

With my colleague Dougie Herd … who I know has already spoken with you

to provide some background from the Disability Council’s perspective … I

hope that we’ll be able to answer your questions and add value to your

deliberations.

Let me preface our comments with what may seem to be, at first, an odd

beginning.

Asked to consider questions such as legal capacity … decision-making good

and bad … whether that is supported, assisted or substitute decision-making

… the rights of people with disability … what a person’s best interest might be

… and the many more complex, some might even suggest philosophical,

questions the Social Issues Committee is being asked to wrestle with … one

is drawn to the now legendary words of the incomparable Donald Rumsfeld

who famously observed:

“There are known knowns. These are things we know that we know.

There are known unknowns. That is to say, there are things that we

know we don't know. But there are also unknown unknowns. There are

things we don't know we don't know.”

Let me start, therefore, with what we know we know.

On the 17th July 2008, the Australian Parliament ratified the UN Convention on

the Rights of Persons With Disabilities. We were one of many organisations

who played a small part in urging the Parliament to reach that decision.

The purpose of the UN Convention, according to its first Article, is to promote,

protect and ensure the full and equal enjoyment of all human rights and

fundamental freedoms by all persons with disabilities, and to promote respect

for their inherent dignity.

That places upon you, as law makers in a legislative body within a Federal

system of Government, not just a responsibility but a duty to re-think the

status quo, to examine whether or not existing laws in NSW meet the

challenges set by the UN Convention and, where it becomes apparent that

our State laws may have slipped a little behind the times … so to speak … to

take legislative action to return NSW once again to the forefront of legislating

let us say, as once it was for example, with the Guardianship Act of 1987, now

30 years old.

Let me observe that we also know we know … for example with the UK’s

Mental Capacity Act 2005 … that it is possible, entirely practical and in our

judgement wholly desirable for law makers such as yourselves to discuss and

enact enabling legislation built upon a presumption of capacity. Such law-

making, it is clear, can be both ‘cutting edge’ in its character and consistent

with meeting the best interests of people with disability, which must always be

our goal.

The question of capacity brings me, I must tell you, to what I think can be

described as one of the known unkowns of life.

To remind you of Mr Herd’s recounting to you of the Jain parable of the

exploration of an elephant by six blind men … capacity is something we all

believe we know what we mean when we talk about it but in reality we

understand … I believe … that defining capacity is anything but easy.

Every one of us has varying degrees of capacity at different times in our lives

and in different circumstances. The experiences we acquire in life and the

education we benefit from may equip us better in some areas of decision-

making than in others. It is not uncommon for all of us to seek advice,

assistance and support in making all kinds of decisions.

Sometimes we make the wrong decision in life. Every now and again we

make some humdingers of bad decisions but that, we are fortunate enough to

recognise, is life and we hope we’ll not make big mistakes too often. Unless I

am much mistaken though, we know that no one goes through life without

making at least one wrong choice.

That doesn’t mean we lack capacity in that area or for our entire life or in

every aspect of our decision making lives.

It seems clear to us, therefore, that a necessary and desirable wish to protect

and safeguard the well-being of sometimes potentially vulnerable people …

people who have one or more of their decision-making capacities reduced,

interrupted or destroyed in one or more aspect of their lives by some disabling

condition … should not automatically or necessarily lead them to being

determined or defined as incapable of decision-making in whole or part now

and possibly forever.

We need a more subtle and sensitive approach to decision-making by, with

and / or on behalf of people whose capacities may be from time to time … in

varying matters … and for varying durations … sometimes prolonged … be

reduced, interrupted or absent.

We need a suite of instruments, agencies and mechanisms … which will

include public advocacy and advice … supported or assisted decision-making

as well as substitute decision-making … and a rights-based framework to

protect the interests of people with disability who reach for decisions that may

touch upon every aspect of their lives such as these examples and many you

may think of too:

Financial decisions ranging from how to budget on the DSP or invest an

inheritance to guarantee … in as much as such a thing is possible … a

nest egg for the future.

Where, how and with whom to live.

How one may express one’s cultural, spiritual, social and / or sexual self.

Dare one say it here and now … who to vote for in 2011?

These are complex questions for any individual to consider and answer with

confidence.

And the questions this parliamentary inquiry raises are no less complex and

just as difficult to answer. But we are not wholly in the dark. And we are not

starting entirely from scratch.

We have the UN Convention to guide us. There is here a genuine paradigm

shift occurring. You are part of it, which may be a daunting prospect, but the

Convention assists us to see more clearly the way ahead and the decisions

we must take.

There are existing laws upon which to build.

Reform is necessary … that much can be agreed or the Attorney General

would not have sent this matter to your table in the first instance. The shape

and scale of that reform may not yet be entirely clear to any of us.

We, like other participants before you, believe that some of the inter-

relationships are so complex and interdependent that it may be necessary to

initiate a broader review, perhaps through the Law Reform Commission. But

we also believe there are changes this Committee could initiate now and I

hope we may suggest some of those possibilities when we answer your

detailed questions.

Thankfully there is a robust and informed community of legitimately interested

advocacy stakeholders with valuable ideas, understandable passion and a

deep sense of commitment to the issues at stake. You have read their

submissions and will hear their valuable evidence. You’ll not agree with

everything they say and different stakeholders will assert sometimes

contradictory views. Nevertheless the decisions you take following their input

will have been assisted by their contribution to this debate.

There are, of course, key agencies led by capable, compassionate and highly

competent public servants with insights that will commend themselves

strongly to you. One thinks of Graham Smith and his staff at the Public

Guardian. The team led by Imelda Dodds at the newly created NSW Trustee

and Guardian. And Di Robinson, other Tribunal members and staff at the

Guardianship Tribunal.

And there are people with disability, their families, friends and associates all of

whom have something to say through this inquiry and beyond as we reform

our laws, organisations and professional practices associated with questions

of capacity.

There are and will be unknown unkowns to be encountered along the path of

reform. But I can leave them for now to be discovered and dealt with as we

progress towards a new set of arrangements based on your deliberations on

the evidence presented to you and the issues that arise from it.

Can I sit here now and say … hand on heart … that I’m certain of what the

outcome of all this will be? That is, I fear, beyond my capacity to deliver.

Let me conclude, therefore, by drawing finally on the wisdom of Kate

Blanchett … for she and I are of one mind when it comes to some questions.

She made this telling observation … I can’t recall about what …

“Look, it's one of the great mysteries of the world, I cannot answer that

question. I think I'm vaguely blonde. To be perfectly frank, I don't

know.”

Thank you.

STANDING COMMITTEE ON SOCIAL ISSUESInquiry into substitute decision-making for people lacking capacity

POSSIBLE QUESTIONS

(Answers in Arial font)

Disability Council of NSWMr Andrew Buchanan

Definitions

In submissions to this inquiry there has been reference made to ‘cognitive,’ ‘mental,’ and ‘intellectual’ disability. Could you explain the difference, if any, between these terms?

The terms can be used inter-changeably although they don’t always mean the same thing.

One may look at cognitive disability, for example, in one of two ways.

From a medical model, a cognitive disability may have a base in physiological or biological processes within the individual, such as a genetic condition or a traumatic brain injury that alters an individual’s ability with mental processes of knowing and understanding including aspects such as awareness, perception, reasoning, and judgment.

From a more functional model, one might say that a person with a cognitive disability (arising from any one of a very broad range of clinical cause) may have a difficulty with, deficit in or be incapable of understanding and using money or making judgements about self-care (e.g. showering or eating properly) or understanding social norms. People with cognitive disability may need assistance with decision-making in areas of ‘normal’ (whatever normal may mean) daily living.

So …

A person with an intellectual disability (often a result of physiological or genetic conditions arising before or at birth or in early childhood) or a person with mental ill-health resulting in psychiatric disability or an adult with an acquired brain injury as a result of an accident, illness or substance abuse or an older person with Alzheimer’s disease could all be said to have a cognitive disability because their underlying diagnostic cognition results in a reduction in or absence of an ability with some mental processing either temporarily or permanently.

Duration of orders

2. It has been argued that the fact guardianship orders can be made for a maximum of 5 years (under s 18 (1A) (b) of the Guardianship Act) whereas financial management orders can be made for an indefinite period of time is inconsistent and unjustified and that the indefinite period of financial management orders conflicts with the general principles of the Guardianship Act, the NSW Trustee and Guardianship Act, and the United Nations Convention on the Rights of Persons with Disabilities, particularly that the least restrictive alternative should be chosen and the autonomy of the person should be respected.1 What is your view on this issue?

The United Nations describes the Convention on the Rights of Persons With Disabilities as a “LANDMARK HUMAN RIGHTS TREATY”. We think this means everyone must see the Convention as something special. It defines a moment of fundamental change for everyone … politicians making laws as well as people with disability living with the effects of those laws.

The UN goes on to say this about the Convention;

While many contended that existing treaties covered persons with disabilities along with everybody else, it was clear that without a legally binding treaty that spelled out their rights, persons with disabilities faced being legally “invisible” in their societies and even in the international arena.

The Convention marks a major shift in the way societies view persons with disabilities, with the person being the key decision-maker in his or her own life. It makes persons with disabilities “rights holders” and “subjects of law”, with full

1 Submission 25, Blake Dawson Pro Bono Team, p 7

participation in formulating and implementing plans and policies affecting them.

To this end Article 3.a of the principles of the Convention requires:

a. Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;

Article 4.b of the Convention requires States Parties (which includes New South Wales as a law-maker in a Federal Australia)

b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;

Article 12.4 is explicitly clear on this topic, requiring that:

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.

The key words here, in our judgement, are “proportional”, “apply for the shortest time possible” and “subject to regular review”.

It is difficult, perhaps impossible, to see how indefinite substitute decision-making of any type, with neither time limit nor review, could be deemed consistent with the UN Convention. Furthermore, it is not easy to see how indefinite periods of substitute decision-making – in this case relating to financial management – could be consistent with existing NSW Law.

As the Committee itself has identified, Section 18 (1A) (b) of the Guardianship Act places an upper limit on any one Guardianship order.

And as the Acting CEO of the NSW Trustee and Public Guardian has helpfully reminded us all in her submission, Section 39 (b) of the NSW trustee and Guardianship Act 2009 places a duty on those bound by the Act to ensure that:

the freedom of decision and freedom of action of [protected] persons should be restricted as little as possible,

In short, therefore, it is the view of the Disability Council of NSW, that it is not consistent with either NSW law or the UN Convention for there to be any type of assisted or substitute decision making power that could be placed upon any person with disability for an indefinite period. We recognise that there may be cost and other issues arising from that view. Periodic review of any order requiring assisted or substitute decision making implies that the people and systems are in place to make such reviews meaningful in the best interests of the individual with disability.

And there must be sensitivity to the interests of the individuals subject to such orders and those who have significance in their lives. In circumstances, let us say, where it is highly unlikely that an individual may ever realistically acquire once again the capacities that have been lost … let us imagine the situation of a young man injured catastrophically in a motor accident with profound and probably lifelong acquired brain injury who nevertheless has a life expectancy of another 30, 40 or 50 years … the periodic review we suggest is required under laws and treaties must not be so frequent or unnecessarily intrusive as to distress legitimately interested other … partners, family, associates … all of whom understand that miracles happen seldom and that which is as near clinical certainty in a hospital trauma unit as anything can be is likely to stay that way for life.

Tribunal processes

3. Section 14 (2) of the Guardianship Act 1987 (NSW) lists the factors the Guardianship Tribunal shall have regard to when deciding whether or not a person is in need of a guardian. Do you feel these factors give sufficient assistance to the Tribunal in reaching this decision?

It is our understanding that the Guardianship Act applies exclusively to people with disability. Section 3 of the Act states "”person in need of a guardian" means a person who, because of a disability, is totally or partially incapable of managing his or her person.”

Given that definition in law, we believe that Section 14 (2) of the Act would benefit from the addition of the reference to the UN Convention on the Rights of Persons With Disabilities. The Convention sets out ‘core’ rights in law to which the Parliament of Australia has committed all Australian legislative bodies to observe, including the NSW Parliament. Whatever else the Guardianship tribunal may be required to do by Section 14 (2), considering the rights, duties and obligations enshrined in the Articles of the Convention ought to be explicitly referenced in the Guardianship Act or any successor law in NSW.

We add this point. It is possible, perhaps likely, that many submissions and some people giving verbal evidence to the Social Issues Committee as part of this inquiry will propose one or another or more amendments to the Guardianship Act or another law with some connection to decision-making or capacity. That may suggest a need for a more comprehensive review of the suite of laws associated with these matters. It may therefore be that the Social Issues Committee recommends consideration of these matters by the Law Reform Commission so that an holistic approach to reform may be conducted free from any risk of unintended or unforeseen outcomes arising from piecemeal reform. In short we may benefit from stepping back to see the wood from the trees as well as looking at one, two or three of the trees in great detail.

4. Section 25G of the Guardianship Act 1987 (NSW) lists the factors the Tribunal must be satisfied of before making a financial management order in respect of a person. Do you think this section provides sufficient assistance to the Tribunal in deciding whether a person requires a financial management order?

Our comments with regard to Section 14 (2) apply to Section 25.G.

Financial management orders

5. It has been argued that there is inconsistency in the matters that must be proven before a financial management order can be made by the Guardianship Tribunal on the one hand, and the Court and Mental Health Review Tribunal on the other. The Guardianship Tribunal, under section 25 of the Guardianship Act, must be satisfied that:

a)  the person is not capable of managing those affairs, and

(b)  there is a need for another person to manage those affairs on the person’s behalf, and

(c)  it is in the person’s best interests that the order be made.

Whereas the Court and the Mental Health Review Tribunal are only required to find that the person is not capable of managing their affairs.2

Do you agree there is an inconsistency? If so, do you know if there is a reason for it? What would be the best way to resolve this inconsistency?

Do we agree that there is an inconsistency? Yes there could be BUT not necessarily, which suggests to us that we need to comprehensively review all NSW legislation relating to decision-making and capacity.

Clearly, the duties of the Guardianship Tribunal and the Mental Health Review Tribunal are not expressed in the same way. That allows for decisions that could be consistently arrived at in some situations but in other situations may be arrived at differently creating the possibility of inconsistent outcomes for individuals at different times or for different individuals with essentially the same circumstances. Neither type of inconsistency ought to be possible.

Do we know if there is a reason for such inconsistency? No we don’t, although we doubt that there is any clinical, medical or disability-related justification for the differences of approach. If we were to speculate, we might guess that different laws are drafted by different people and approved by different politicians in different Parliaments at different times and in differing contexts. If that’s anything like being true, it’s not surprising inconsistencies develop over time. It’s no one person’s fault and it’s not the result of any conspiracy or philosophical intention to treat some people differently form others.

2 Submission 25, Blake Dawson Pro Bono Team, p 8

In responding to the third of the Committee’s questions, “What would be the best way to resolve this inconsistency?” our earlier point illustrates, in our view, that from time to time the need can arise to comprehensively review all laws in a given area of social policy. Now seems like a good time to review laws relating to capacity and decision-making, given the recent ratification of the UN Convention on the Rights of Persons With Disabilities. As far as we are able to judge every stakeholder with an interest in this Social Issues Committee Inquiry recognises that ratification of the UN Convention affects NSW legislation relating to guardianship, capacity, financial management, decision-making of all types and people with disability. It makes sense to us to initiate a comprehensive review of NSW Law, probably by the NSW Law Reform Commission

6. The Guardianship Tribunal, when deciding on a guardianship order, is required under section 14 of the Guardianship Act to consider the views of the person, the person’s spouse (if the relationship is close and continuing) and the person’s carer, if any. However, the Tribunal, the Courts and the Mental Health Review Tribunal are not required to take into account the views of these people when making a financial management order.3

Is there a reason the views of these people are not required to be considered when making a financial management order?

In your view should the views of these people be considered?

Our answers to Question 5 apply to Question 6.

Public Guardian functions

7. The Public Guardian has recommended that section 21A of the Guardianship Act 1987, allowing the Public Guardian to authorise members of the NSW Police Force to move a person under a guardianship order from one place of residence to another, be amended to specify that the Police may use “all reasonable force.”4 Can you comment on this proposal?

We understand the Public Guardian does not seek a new power but to bring Section 21.A of the Act into line with sections 11 and 12 of the Act, which permit the use of “all reasonable force”. We assume that police officers using such powers would be required to use force understanding that it was a measure to be applied 3 Submission 25, Blake Dawson Pro Bono Team, p 94 Submission 7, Office of the Public Guardian, p 19

under section 21.A.2 (b) of the Act as such intended to be “in the best interest of the person under guardianship” and, under section 21.A.2 (C) only as “necessary”.

We would limit the power to use “all reasonable force” to situations in which it is necessary rather than merely “desirable” as is also permitted under section 21.A.2 (C). Force, reasonable or otherwise, can never be desirable in our view although we can conceive of circumstances in which the best interests of the person make it necessary. We would add that any use of reasonable force must always be applied as a last resort and only after every other means of moving a person has been attempted and/or discounted as being against the interest of the individual to be removed.

We further believe that all NSW legal instruments that confer a power upon any legitimately appointed agent to move or detain any person with disability and/or under guardianship using reasonable force be compelled to demonstrate that the use of force is or was consistent with

1. Article 9 (1) of the International Covenant on Civil and Political Rights , which states that everyone has a right to liberty and security of their person; and

2. UN Principles governing people with mental illness, specifically’

a. Principal 16.1 (a) that requires the authorised agent to show “there is a serious likelihood of immediate or imminent harm to that person or to other persons”; and

b. Principle 16.1 (b) that failure to act would be “likely to lead to a serious deterioration in his or her condition” and is in “accordance with the principle of the least restrictive alternative”.

8. The Public Guardian has recommended that the Guardianship Act 1987 be amended to allow the Public Guardian to pro-actively investigate matters where it becomes aware a vulnerable person may be in need of a guardian.5 Can you comment on this proposal?

We would support the granting of such powers to the Public Guardian, which could be justifiably applicable, however, only within the rights-based framework of the UN Convention on the

5 Submission 7, Office of the Public Guardian, p 14

Rights of Persons with Disabilities and the International Covenant on Civil and Political Rights. We assume the current Public Guardian would agree to operate within such parameters, supportive as we know him and his staff to be of the rights of people with disability. Granting this new power demonstrates yet further the need to locate legislation governing decision-making and people with disability within the framework of UN Convention.

In our view, this proposal, our earlier comments about the need for various amendments to several current Acts and proposals such as that in favour of creating a Public Advocate demonstrate the clear need for a comprehensive review of legislation in this area of social policy.

9. The Public Guardian has recommended the Guardianship Act 1987 be amended to allow the Public Guardian to assist people with decision-making disabilities without the need for a guardianship order.6 Can you please comment on this proposal?

This strikes us an eminently sensible proposal. Since the passing of the Guardianship almost 30 years ago our understanding of the relationship between people with disability and civil society has been transformed. That transformation is not yet completed. We have not yet removed discrimination against people with disability entirely. Nor have we yet achieved full social inclusion for all.

To some degree, the UN Convention gives us an indication of how far we have come in 30 years. The Convention also points us to the way ahead.

We require a more nuanced, person-centred approach to decision-making by and for people with disability with reduced, interrupted or absent decision-making capacity. Given that a statutory body such as the Public Guardian necessarily acquires operational skill and experience by virtue of its duty to work with people under Guardianship it seems wasteful of that expertise to restrict its use to a cohort defined solely by virtue of a decision of the Guardianship Tribunal

We repeat a frequently made point, however, this reasonable suggestion in its own right supplements others; no less reasonable in their own rights too. If we are to engage in good policy-making

6 Submission 7, Office of the Public Guardian, p 13

and appropriate amendment of existing laws it is necessary, in our view, that we exercise sound judgement and recognize that a comprehensive review is essential. Where there is clear and compelling evidence to support changes around which a consensus can be built we should make those changes in a timely manner … not waiting to cross every t and dot every i of every proposal. But such are the varieties and inter-connectivity of the proposals being considered by the Social Affairs Committee that it seems to us to be evident that a Law Reform Commission report will be necessary.

Responsible person

10. The Guardianship Act 1987 provides a hierarchy of people who may be considered the “person responsible” for another person, and who must be contacted - for example, by a dental or medical practitioner - to obtain substitute consent for treatment. This hierarchy allows for more than one person to be equally considered the “person responsible” potentially leading to difficulties if they disagree on the treatment being suggested.

Are there any advantages to having more than one person qualify equally as the “person responsible”?

What is your comment on any proposal to amend the Act to ensure that only one person can be deemed the “responsible person”?

Those of us who are not subject to Guardianship or other decision-making management orders, if we’re adults, are ultimately solely responsible for the decisions we make (be they good or bad decisions). We may seek advice from and consult with others as we reach the decisions we must take. But in the end, each of us takes our own decisions

In as much as it is humanly possible, processes of guardianship and other forms of decision-making management should strive to emulate the kind of behaviour we accept as the norm. For that reason, we believe that ultimately only one person should have the duty to take the decision on behalf of another, where that power has been granted. That person must be obliged to consult appropriately where possible and act in the interest of the person with disability to reach the least restrictive solution. But the final decision must fall to one individual.

11. The Public Guardian has recommended consideration be given to expanding the legal authority of a “person responsible” for

another person under the Guardianship Act 1987 so that in addition to making decisions regarding medical care, the “person responsible” could also make decisions related to accessing services or deciding where to live.7 Could you comment on this proposal?

The powers granted to any substitute and / or assistive decision-maker should be decision-specific with regard to the circumstanced of the reduced, interrupted or absent decision-making capacity of the individual concerned. There needs to be, as in the UK’s Mental Capacity Act 2005, an explicit legal assumption that individuals have legal capacity unless it is demonstrated to be reduced, interrupted or absent. How that assessment may be reached also needs to be codified.

Within such a framework, therefore, any agent could be assigned a duty to take or assist with decisions with a, b, c and/or d in a person’s life. It would not be legitimate for that agent to determine that because it had powers with regard to a to d in an individual’s life that agent might as well deal with e, f and g while they were at it.

Any power to make a decision on behalf of another must be directly linked to a specific lack of decision-making capacity.

12. The Guardianship Act 1987 provides that the “person responsible” for another person shall ensure that any medical and dental treatment shall be for the purpose of “promoting and maintaining their health and well-being.”8 This effectively prevents the “person responsible” from authorising the withdrawal of life sustaining medical treatment in circumstances where continuing such treatment would not be in the person’s best interests.

Do you think that “persons responsible” under the Act should be able to authorise the withdrawal of life sustaining medical treatment?

With whom do you think the authority to withdraw life sustaining medical treatment should reside?

These questions touch on matters of personal, individual conscience. Right to life and end of life decisions are not matters about which the Council could or should reach a ’corporate view’, so to speak.

7 Submission 7, Office of the Public Guardian, p 208 Guardianship Act 1987, s 32 (a)

Given that NSW has no legislative framework for Advanced Medical Care Directives it is difficult to see how any substitute decision-maker could authorise the withdrawal of life sustaining medical treatment given what we have said above about the granting of powers being directly linked to specific decisions.

It may be that Parliament decides at some point to modernise the NSW approach to Advance Medical Care Directives. Unless and until Parliament does it surely cannot be possible, even if it were desirable, for a substitute-decision maker to reach a decision for another person that the law does empower them to make in their own life.

STANDING COMMITTEE ON SOCIAL ISSUESInquiry into substitute decision-making for people lacking capacity

POSSIBLE QUESTIONS

(Answers in Arial font)For all witnesses on Monday 28 September

Assisted/Supported decision-making versus substitute decision-making

1. In relation to ‘assisted’ decision-making as opposed to ‘substitute’ decision-making, there is a question as to whether an assisted decision-maker would make decisions that they (the assisted decision-maker) thought were right, or that were the wishes of the person being assisted. The second of these alternatives is sometimes referred to as respecting the person’s right to make bad decisions.

Can you comment on this issue? If legislation providing for assisted decision-making were to

be introduced in NSW how do think it should address this issue?

No one has a right to make a bad (or good) decision (both of which words imply value judgements). As adults, assumed to have decision-making capacity, we only have the right to make decisions. In everyone’s life some of them turn out to be better decisions than others. We learn from our mistakes and try not to make bad decisions again. We know that from time to time we’ll fail and take more than one bad decision in life. We try but we’re human and err.

Assisted and substitute decision-making should seek to replicate normal decision-making as much as that is humanly possible. That does not mean that one would be required to assist another person to make a demonstrably incorrect or bad decision.

Assisted decision-making should become an essential tool available to agents duly appointed under any NSW legislation in the area. Those agents and the mechanism and processes governing their statutory duty to assist in decision-making would inter alia be required to comply with Australian and State Law including the UN Convention on the Rights of Persons With

Disabilities. Among other safeguards, therefore, it would not be lawful to assist an individual to make:

Unlawful decisions; Decisions that would be in breach of the principles of the UN

Convention on the Rights of Persons With Disabilities or the UN International Protocol on Civil and Political Rights;

Decisions that could not be demonstrated to any reasonable observer to be in the best interests of the person assisted to reach a decision; or

Decisions that any reasonable judge of their likely and/or foreseeable outcome could see might lead to harm to the assisted person or any other person.

Capacity

2. It has been suggested to the Committee that decision-making capacity should be regarded as a spectrum with complete autonomy at one end and substitute decision-making at the other.9

Who do you believe is qualified to assess where on this spectrum a person may be and what information is required in order to make this assessment?

In practice, how could substitute decision-making arrangements be constructed to accommodate the fact that a person’s capacity may vary from time to time and situation to situation?

As is the case under the UK’s Mental Capacity Act 2005, capacity should be considered to be inherent in every adult. Any deviation from that assumption should be required to be demonstrated by evidence.

Any decision to deem any person lacking in capacity to make decisions should be decision-specific and in relation to the matter at the core of a decision if at the material time the individual is unable to make a decision for himself or herself because of a disability related to, or a disturbance in the functioning of, the mind or brain.

By adopting such an approach no attempt to locate a person’s decision-making capacity on some abstract, idealised spectrum would ever be required. The key questions, as always, would relate to an individual’s capacity at a specific point in time to reach a required decision on a specific matter and any assistance that an 9 Submission 3, Intellectual Disability and Rights Service, p 3

individual may require to reach the decision in accordance with their rights in Law and their own best interests. The decisions any individual may be assisted to make have no bearing in the real world on any theoretical spectrum, matrix or framework of decision-making although one could, if one wished, construct such a framework for research or academic purposes.

An approach built upon an assumption of capacity, turning on decision-specific matters at the material time creates a more flexible and supportive framework within which assisted decision-making may be practiced. We acknowledge that such a framework would require changes to NSW Law and is likely to result in organisational and administrative changes to NSW agencies. There may be additional costs arising in the areas of supported and assisted decision-making but those costs are likely to be offset elsewhere in the service system by better, more appropriate outcomes for the individuals concerned (e.g. earlier intervention to prevent crises, diverting people from costly medical or justice system destinations, promoting greater autonomy and participation by previously isolated individuals). Restrictive practices

3. It has been argued by another inquiry participant that a primary reason for the appointment of a guardian is to authorise the use of restrictive practices upon a person with disability, including chemical, mechanical and physical restraint, detention, seclusion and exclusionary time out.10 It has been further argued that an independent public office be established to regulate the use of restrictive practices in NSW.

Can you comment on the use of restrictive practices in NSW in the context of guardianship orders?

What provisions are there in existing NSW legislation to regulate the use of restrictive practices?

Do you think there is a need to amend NSW legislation in relation to the use of restrictive practices?

We are not persuaded that the primary reason for the appointment of a guardian is to authorise the use of restrictive practices. That does not mean we would not support calls for the establishment of an independent public office to regulate the use of restrictive practices. The latter could be a good piece of policy development without the former being true.

10 Submission 4, People With Disability/Mental Health Coordinating Council, p 28

We have said elsewhere in our responses that we favour a comprehensive review of NSW legislation relating to capacity, guardianship and decision-making. We believe that is a necessary consequence flowing from ratification of the UN Convention and, indeed, the terms of reference of this Social Affairs Committee inquiry. The sooner such a comprehensive review is initiated and concluded, probably resulting in new legislation, the better.

Advanced Medical (Care) Directives

4. NSW has no legislative provisions for advanced care directives; however, NSW Health provides advice on how to develop a document that would be valid at common law.

Could you comment on the status of advanced medical directives in NSW?

Do you believe there is a need for NSW legislation relating to advanced medical directives?

Are doctors generally willing to comply with the directives?

How do advanced care directives and guardianship or enduring powers of attorney interact?

In answering a related question, we said the following:

These questions touch on matters of personal, individual conscience. Right to life and end of life decisions are not matters about which the Council could or should reach a ’corporate view’, so to speak.

Given that NSW has no legislative framework for Advanced Medical Care Directives it is difficult to see how any substitute decision-maker could authorise the withdrawal of life sustaining medical treatment given what we have said above about the granting of powers being directly linked to specific decisions.

It may be that Parliament decides at some point to modernise the NSW approach to Advance Medical Care Directives. Unless and until Parliament does it surely cannot be possible, even if it were desirable, for a substitute-decision maker to reach a decision for another person that the law does empower them to make in their own life.

Public Advocate

5. It has been proposed that an office of the Public Advocate be established in NSW to promote and protect the interests of people with disabilities, such as exists in some other Australian jurisdictions.

Could you comment on this proposal From your knowledge of the role such an office would

perform, how would such an advocate interact with existing entities in NSW such as the Guardianship Tribunal, the Mental Health Review Tribunal, the NSW Trustee and Guardian, the Public Guardian and the NSW Ombudsman?

Are any of the functions such an advocate would perform currently being performed by other entities in NSW?

We see merit in such a proposal and support it in principle. The details of how such an office might carry out its duties, its relationship with and to existing agencies and its consequences for the existing framework would need to worked-out through an inclusive process of consultation involving all legitimate stakeholders. As others have indicated in their submissions Public Advocates or similar bodies exist in other jurisdictions. Each has different powers, duties and operational parameters. Some do not exist in NSW. Some exist in NSW, dispersed through various agencies. It could be as simple as giving public advocacy powers to the NSW Public Guardian and changing the revised agency’s name but we are reasonably sure that nothing in life is that simple.

It would be necessary (and we believe desirable) to reach a decision that the creation of an Office of the Public Guardian would serve the best interests of people with disability in NSW. Once taken, that decision would necessarily require a community-wide discussion, involving the agencies cited in the question and others, about then varying powers and functions available in this area of social and should be distributed best between the various agencies deemed necessary to ensure the rights of people with disability are protected