The report deals with the desirability of changes to the Guardianship Act 1987 (NSW) having regard to for example the NSW Trustee and Guardian Act 2009 (NSW), Powers of Attorney Act 2003 (NSW), Mental Health Act 2007 (NSW), the 2014 ALRC Equality, Capacity and Disability in Commonwealth Laws report and the UN Convention on the Rights of Persons with Disabilities.
The Commission states that its recommendations
envisage a new framework for assisted decision-making laws that reflects the United Nations Convention on the Rights of Persons with Disabilities (“UN Convention”). They draw upon contemporary understandings of decision-making.
For this review, we released six question papers covering a range of issues about guardianship, including decision-making models, the functions and responsibilities of those assisting with decision-making, court and tribunal procedure, and safeguards.In outlining its recommendations (identified in the following post) the Report states
Background to the review (Chapters 2-3)
Guardianship, the concept that a person can be appointed to protect another person who is unable to manage aspects of their own life, has a long history. Many of the ideas about guardianship have remained virtually unchanged since its conception. However, in the last 20 years, there have been significant shifts in thinking.
The Guardianship Act reflects an approach that was prevalent when it was enacted. At its heart is the concept of substitute decision-making, with the “welfare and interests” of the person needing guardianship given paramount consideration in the decision-making process.
The Act has served the NSW community for over 30 years. However, it no longer reflects the social, legal and policy environments that surround it.
This is partly because of developments in human rights law. In 2008, Australia ratified the UN Convention. The UN Convention clarifies how existing international human rights obligations apply to people with disability. It adopts the “social model” of disability, which is now widely considered the leading model. This model recognises that disability is an evolving concept and that attitudinal and environmental barriers can hinder people with disability from full and effective participation in society on an equal basis with others.
Some important tenets of the social model of disability include: • Perceived or actual deficits in mental capacity must not justify denying legal capacity. • Supported decision-making (which emphasises that a person with impaired decision-making ability can make decisions for themselves provided they have the necessary support) should be preferred over substitute decision-making. • A person’s will and preferences should be respected and not overruled by action thought to be in their objective best interests.
The profile of people who are the subject of guardianship applications in NSW has also changed. Initially, the largest group was people with an intellectual disability. Cases involving people with dementia are now the most common. Cases involving people with a mental illness or brain injury also make up a significant number of applications.
The way disability services are delivered is changing. From July 2018, the National Disability Insurance Scheme (“NDIS”) will operate across NSW. Under the NDIS, eligible individuals receive allocated funding for disability supports. The NSW agency — Ageing, Disability and Homecare (“ADHC”) — will transfer all its disability support services to the non-government sector. We need to ensure that within the new service delivery landscape, State and Commonwealth oversight mechanisms interact effectively to guarantee the safety of people with disability.
There are ongoing and increasing concerns about elder abuse. Elder abuse can include a guardian or financial manager making inappropriate decisions or taking advantage of an older person they are supposed to be supporting. It is important that there are safeguards against such behaviour.
A new assisted decision-making framework (Chapter 4)
We are recommending a new framework for assisted decision-making laws. This new framework departs significantly from the existing framework, which offers only substitute decision-making.
NSW should have a new Assisted Decision-Making Act (“the new Act”) that provides a formal framework for both supported decision-making and (as a last resort) substitute decision-making. It would replace the Guardianship Act and the enduring power of attorney provisions in the Powers of Attorney Act 2003 (NSW) (“Powers of Attorney Act”). (Rec 4.1)
The new Act should be internally consistent and be drafted using simple and accessible language and structure. (Rec 4.2)
The new Act should adopt terminology that reflects contemporary understandings of decision-making ability and move away from the paternalistic language of “guardian” and “guardianship”. The term “representative” should, therefore, be used when the Tribunal appoints a substitute decision-maker instead of “guardian” and “financial manager”. The term “enduring representative” should be used, when a person chooses their own representative instead of “enduring guardian” and “attorney” under a power of attorney. The term “supporter” should be used for someone who assists a person to make their own decisions. (Rec 4.3)
The recommendations assume the existence of the following key entities: the NSW Trustee (currently called the NSW Trustee and Guardian), the Public Representative (currently called the Public Guardian), the Assisted Decision-Making Division of the NSW Civil and Administrative Tribunal (currently called the Guardianship Division), and the Public Advocate (a proposed new entity).
The types of decisions covered by the new Act should be personal decisions, financial decisions, healthcare decisions, and restrictive practices decisions. (Rec 4.4-4.7)
The key policies underpinning our recommendations include: • The law should recognise a wide range of decision-making assistance options. • A person’s autonomy should be restricted as little as possible. • People should participate, as much as possible, in decisions that affect them. • The law should reflect a more realistic view of decision-making ability. • People should be encouraged to appoint their own supporters and representatives. • Tribunal orders should be a last resort. • There should be enhanced support for fair and effective informal arrangements. • Accountability mechanisms and safeguards should be improved. • The new Act should interact smoothly with other relevant laws. • There should be uniformity with provisions elsewhere in Australia when possible and desirable. • The law should include specific consideration of the circumstances of Aboriginal people and Torres Strait Islanders and the systemic disadvantage they experience.
The fundamental shift in thinking involved in the new Act would require substantial education and training of all participants in the system. Key agencies, including the Assisted Decision-Making Division of the NSW Civil and Administrative Tribunal, the Public Advocate and the NSW Trustee would need to be adequately resourced. Data should be collected to allow empirical research into the operation of the new framework.
Objects and principles (Chapter 5)
The new Act should contain a statutory objects clause to guide its interpretation. It should emphasise the rights of people in need of decision-making assistance and the importance of the purposes and principles of the UN Convention. (Rec 5.1)
The new Act should also contain a list of general principles that everyone exercising functions under it should observe with respect to people in need of decision-making assistance. They should be: (a) Their will and preferences should be given effect wherever possible. (b) They have an inherent right to respect for their worth and dignity as individuals. (c) Their personal and social wellbeing should be promoted. (d) They have the right to participate in and contribute to social and economic life. (e) They have the right to make decisions that affect their lives (including decisions involving risk) to the full extent of their ability to do so and to be assisted in making those decisions if they want or require assistance. (f) They have the right to respect for their age, sex, gender, sexual orientation, cultural and linguistic circumstances, and religious beliefs. (g) They should be supported to develop and enhance their skills and experience. (h) They have the right to privacy and confidentiality. (i) They have the right to live free from neglect, abuse and exploitation. (j) Their relationships with their families, carers and other significant people should be recognised. (k) Their existing informal supportive relationships should be recognised. (l) Their rights and autonomy should be restricted as little as possible. (Rec 5.2)
There should also be specific principles relevant to Aboriginal people and Torres Strait Islanders to account for their customary law, culture, values and beliefs as well as to the disadvantage they experience. (Rec 5.3)
The recommended general principles are in line with contemporary human rights and disability rights principles. One of the most important changes is to remove the current requirement that people give “paramount consideration” to a person’s “welfare and interests” and instead require that a person’s will and preferences be given effect to wherever possible.
In giving effect to a person’s will and preferences, anyone exercising functions under the new Act should: • first, be guided by the person’s expressed will and preferences (including those in a valid advance care directive) wherever possible • if these cannot be determined, be guided by the person’s likely will and preferences (determined by previously expressed will and preferences or by consulting people with a knowledge of the person’s will and preferences) • if the person’s likely will and preferences cannot be determined, make decisions that promote the person’s personal and social wellbeing, and • if giving effect to a person’s will and preferences creates an unacceptable risk to the person, make decisions that promote the person’s personal and social wellbeing. (Rec 5.4) 0.26 Requiring someone to be guided by a person’s will and preferences and, if these are not knowable, then their personal and social wellbeing, departs from the current “best interests” test, which is widely seen as paternalistic.
Decision-making ability (Chapter 6)
There is no clear or consistent definition of decision-making ability (or “capacity”) in the Guardianship Act. This is despite the fact that a finding that a person lacks decision-making ability can have serious consequences for their autonomy.
Decision-making ability is a central concept in all circumstances covered by the new Act, including the entry into, and continued operation of, personal support agreements and enduring representation agreements, the making and continued operation of support orders and representation orders, and the making of healthcare decisions.
The new Act should provide that a person has “decision-making ability” for a particular decision if they can, when the decision needs to be made: (a) understand the relevant information (b) understand the nature of the decision and the consequences of making or failing to make that decision (c) retain the information to the extent necessary to make the decision (d) use the information or weigh it as part of the decision-making process, and (e) communicate the decision in some way. (Rec 6.1)
This definition is framed in terms of ability as part of a move away from the language of disability and other discriminatory aspects of the Guardianship Act. Specifically referring to decision-making ability “for a particular decision” acknowledges the reality that a person’s decision-making ability can vary depending on the circumstances.
While the presumption of decision-making ability exists at common law, there is no statutory presumption in NSW. This should be introduced. (Rec 6.2)
The new Act should provide guidance on determining a person’s decision-making ability, including: • that reasonable steps be taken to ensure the person’s ability is assessed at a time and in a place where it can be assessed most accurately, and • that decision-making ability is decision and time specific and may fluctuate over time.
The new Act should also provide that a finding of a lack of decision-making ability cannot be based solely on a person’s appearance, behaviour and beliefs, the fact that people may disagree with the person’s decisions, or the person’s method of communication. (Rec 6.3)
Particular attention should be given to any cultural or linguistic factors (including non-verbal communication) that may impact on assessing the decision-making ability of an Aboriginal person or Torres Strait Islander. (Rec 6.4)
Supported decision-making (Chapter 7)
The new Act should provide for formal supported decision-making as a new part of the assisted decision-making framework, where a “supporter” helps a person to make decisions about various areas of their life. Under a supported decision-making arrangement, the supported person retains their legal capacity and makes their own decisions. Formal supported decision-making can take place under a personal support agreement or a Tribunal support order.
Supported decision-making arrangements would be a part of a suite of different assisted decision-making options. They will not suit every circumstance. Nor do we intend that support agreements would take the place of informal arrangements that are working well. Supported decision-making should provide a less restrictive option for people who, for example, would otherwise be subject to substitute decision-making arrangements.
Personal support agreements
To be eligible to appoint a supporter under an agreement, the supported person should be at least 18 years of age, have decision-making ability to enter the agreement and be making the agreement voluntarily. (Rec 7.1)
There should be few limits on who can become a supporter. However, we recommend excluding anyone under the age of 16 years, the NSW Trustee and Public Representative and, if the agreement covers financial decision-making, anyone who has been bankrupt or been found guilty of an offence involving dishonesty, unless they have recorded this in the agreement. (Rec 7.2) In the interest of not limiting the supported person’s autonomy to decide who is appropriate, this allows someone to appoint paid care workers, volunteers and others involved in providing medical, accommodation or other daily services as supporters.
Personal support agreements should be in a prescribed form and made subject to the formal witnessing requirements. (Rec 7.3)
In recognition that people may need assistance in preparing a support agreement, we recommend that the Tribunal be able to refer the facilitation of a support agreement to the Public Advocate. (Rec 7.4) The Tribunal should also be able to declare that an appointment of a supporter under an agreement has effect. (Rec 7.5)
Tribunal support orders
A Tribunal support order involves the Tribunal appointing a supporter as a last resort to facilitate supported decision-making.
The person requiring support may apply to the Tribunal for a support order. The Public Representative, the Public Advocate, or a person with a genuine interest in the wellbeing of the person who requires support should also be able to apply. (Rec 7.6)
We recommend that Tribunal support orders can only be made with the consent of the supported person and the supporter, and when less restrictive measures are either unavailable or not suitable. (Rec 7.7)
Subject to the Tribunal’s assessment of a potential supporter’s suitability, anyone 16 or older should be eligible for appointment, except for the Public Representative or NSW Trustee. (Rec 7.9)
When deciding who to appoint, the Tribunal should take into account matters including the will and preferences of the person in need of support, the nature of the relationship between the proposed supporter and that person, and any conflict of interest that may arise. (Rec 7.10)
Paid workers or those who might be receiving remuneration to act as a supporter should not be expressly excluded from appointment.
Key features of supported decision-making
A support agreement or order should allow one or more people to assist with decision-making on the range of decisions covered by the new Act, including decisions about personal matters, financial matters, healthcare and restrictive practices. (Rec 7.14 and 7.16) A reserve supporter should also be able to be appointed. (Rec 7.17)
A supporter’s role should be to access or collect information that is relevant to the decision, assist the supported person to communicate their decision and advocate for the implementation of that decision. A supporter should not be able to make decisions on behalf of the supported person or exercise their functions without the supported person’s knowledge and consent. Otherwise, the support agreement or order should determine a supporter’s functions. (Rec 7.12)
We recommend ensuring that all supporters are aware of their responsibilities under a support agreement or order by acknowledging them in writing. These include observing the new Act’s general principles (including to give effect to the person’s will and preferences), acting honestly, diligently and in good faith, not coercing, intimidating or unduly influencing the supported person, and responding appropriately to situations where there may be a conflict of interest. (Rec 7.13) 0.50 We recommend that a support agreement or order may cease to have effect in a number of ways: • when the supported person does not have decision-making ability for a decision even when assisted by the supporter (Rec 7.15) • when the supporter resigns by notice in writing or with Tribunal approval (Rec 7.18) • when the supported person revokes the agreement or order in writing, (Rec 7.19) or • after the Tribunal has reviewed it. (Rec 7.20 and 7.21)
Appointment of representatives (Chapters 8 and 9)
The new Act should provide for two types of formal substitute decision-making arrangements as a last resort: • enduring representation agreements where a person with decision-making ability appoints their own representatives (to replace the current arrangements for enduring guardians and enduring powers of attorney), and • representation orders where the Tribunal appoints a person’s representatives (to replace the current arrangements for guardians and financial managers).
We are recommending that each representation arrangement is capable of covering all types of decisions, including personal decisions and financial decisions. We have decided on a single approach to all types of decisions because there is no reason why the majority of requirements and safeguards for the two current systems need to differ either in content or expression. We have not, however, proposed merging the roles of the Public Representative (in relation to personal decisions) or the NSW Trustee (in relation to financial decisions).
In framing the recommendations for appointing representatives, we have drawn on requirements and safeguards under the existing regimes. Our aim has been to avoid unnecessary requirements, to streamline procedures and to maintain and increase safeguards as appropriate.
Personal appointment of representatives (Chapter 8)
Under a single agreement, a person should be able to appoint one or more enduring representatives to make decisions about personal matters, financial matters, healthcare matters and/or restrictive practices. (Rec 8.1) 0.55 To be eligible to appoint an enduring representative, the person should be at least 18 years of age, have decision-making ability to enter the agreement and be making the agreement voluntarily. (Rec 8.2)
The new Act should adopt the eligibility requirements in the Guardianship Act that apply to enduring guardians, for the appointment of enduring representatives, while including one additional safeguard: a person who has been bankrupt or convicted of a dishonesty offence must disclose this before they can be appointed as a representative with financial functions. (Rec 8.3)
The process for appointing an enduring representative should be consistent with the current process for appointing enduring guardians in the Guardianship Act. (Rec 8.4) A person should be able to appoint multiple representatives to act jointly or severally in relation to one or more decision-making functions. They should also be able to appoint a reserve representative, for circumstances where the appointed enduring representative dies, resigns or becomes unable to undertake the role. (Rec 8.5) A person should have the discretion to decide when the representative should start exercising their functions. (Rec 8.8) These recommendations are consistent with the principle that the represented person should have as much choice as possible.
The person making the appointment should also have the discretion to set the scope of an enduring representative’s authority, including which decision-making functions they may have, and any limits or lawful conditions on their use. (Rec 8.6)
The new Act should make clear statements in areas where the existing provisions are inadequate or silent. It should, therefore: • set out the responsibilities of enduring representatives and require enduring representatives to acknowledge them (Rec 8.7) • set out the factors that the Tribunal should consider when reviewing an enduring representation agreement (Rec 8.11), and • clarify the status of an advance care directive in an enduring representation agreement if the agreement has lapsed or has been suspended or revoked (unless revoked by the represented person at a time when they still have decision-making ability). (Rec 8.17)
Tribunal appointment of representatives (Chapter 9)
Under a single appointment, the new Act should allow the Tribunal to appoint one or more representatives to make decisions about personal, financial, health care and/or restrictive practices matters for the represented person. (Rec 9.1) The new Act should not expressly allow the Tribunal to make plenary (or unlimited) orders, as it currently can for guardianship. Rather, all agreements and orders should specify the particular functions a representative has.
Our recommendations about who can apply for a representation order are consistent with the Guardianship Act, as are provisions that require the applicant to specify the grounds upon which they seek the order. (Rec 9.2)
However, unlike the Guardianship Act, we have moved away from requiring the Tribunal to consider whether the person has a disability. Instead, the new Act should require that the Tribunal is satisfied that there is a need for an order and that the proposed represented person does not have decision-making ability for one or more decisions covered by the order. Before making an order, the Tribunal should be required to consider, where relevant, the adequacy of existing or available formal or informal arrangements, and the availability and suitability of less restrictive and intrusive measures to meet the person’s needs. (Rec 9.3)
There should also be additional considerations that the Tribunal should take into account when making orders for Aboriginal people and Torres Strait Islanders. (Rec 9.4)
The Tribunal should only be able to make orders for people 17 years and over and orders should not come into effect until they turn 18. (Rec 9.3 and 9.8)
A person over 18 should be eligible to be appointed as a representative. People between 16 and 18 should be eligible where they are the represented person’s primary carer, they are already supporting the person or making decisions on their behalf, and the proposed functions are consistent with their decision-making abilities. (Rec 9.5(2))
Corporations should be allowed to act as representatives. The Public Representative and NSW Trustee should only be appointed as a last resort. (Rec 9.5(3))
The Tribunal should only appoint a person as a representative if satisfied that they are suitable in accordance with relevant considerations set out in the new Act. (Rec 9.6) 0.68 The Tribunal should have the power to decide that a professional representative (that is, a representative with financial functions who carries on a business involving the administration of estates) can be remunerated from the represented person’s estate. The NSW Trustee should be able to determine the amount of remuneration that is reasonable in the circumstances. (Rec 9.7)
We recommend placing time limits on representation orders, as well as implementing a process of periodic review for all representation orders. This changes the current law, which sets time limits on, and has a process of periodic review for, guardianship orders but not for financial management orders. (Rec 9.8) Our approach reflects the principle of least restriction and is consistent with the UN Convention, which emphasises that measures must be proportional and tailored to the person’s circumstances and apply for the shortest time possible.
The Tribunal should have a new discretion to determine whether the NSW Trustee should supervise a Tribunal appointed representative with financial functions and whether the representative requires NSW Trustee or Supreme Court authorities or directions. (Rec 9.19)
The new Act should allow the Tribunal to make short-term orders for 30 days or less in situations where the person is exposed to an unacceptable risk and the Tribunal is satisfied that the need for the order is urgent. (Rec 9.9) This recommendation effectively reframes the “temporary orders” currently available under the guardianship provisions as “emergency orders” to reflect better the purpose of those orders.
The Tribunal should be able to appoint multiple representatives to act jointly, or severally, in relation to one or more decision-making functions, and appoint a reserve representative to act if an original representative dies, resigns or does not have the decision-making ability to act under the order. (Rec 9.10 and 9.11)
The responsibilities of representatives should be the same as the responsibilities that apply to enduring representatives, and representatives must acknowledge they have read and understood them. (Rec 9.13)
The new Act should, consistent with the Guardianship Act, allow a broad range of people to apply for review of orders. (Rec 9.16) Unlike the current provisions, the new Act should specify the factors the Tribunal should consider upon review and the orders the Tribunal may make. (Rec 9.17)
As under the Guardianship Act, the Tribunal should be able to make an order specifying actions a person may take to enforce a representative’s decisions. (Rec 9.20)
A representative should only be able to resign with the approval of the Tribunal. (Rec 9.21) The new Act should set out what happens when a representative dies or does not have decision-making ability. (Rec 9.22)
Healthcare (Chapter 10)
We recommend changes to the consent framework for medical and dental treatment currently covered by part 5 of the Guardianship Act. These include a will and preferences approach to healthcare decisions by the “person responsible” and the Tribunal, and statutory recognition of advance care directives.
The general statutory objects (Rec 5.1) should apply to the healthcare decision-making provisions rather than specific statutory objects as set out in part 5 of the Guardianship Act. (Rec 10.1) Where people are now required to consider a patient’s views, they should instead be required to give effect to their will and preferences, to be determined as set out in Rec 5.4.
The healthcare provisions should apply to patients who do not have “decision-making ability” for a healthcare decision, rather than patients who are “incapable of giving consent”. Decision-making ability should be determined in the same way it is in all other areas covered by the new Act. (Rec 10.2)
The scheme should be expanded beyond healthcare given by medical practitioners and dentists to all registered health practitioners as defined in the Health Practitioner Regulation National Law (NSW). This will bring a range of healthcare decisions under the processes and safeguards of the new Act. In particular, it will ensure coverage of healthcare given by nurses and paramedics. (Rec 10.4)
The new Act should explicitly recognise advance care directives, while preserving existing common law requirements. (Rec 10.5)
The new Act should maintain the urgent treatment regime in part 5 of Guardianship Act, to ensure healthcare can be administered to a patient without consent if the healthcare is necessary, as a matter of urgency, to save the patient’s life, prevent serious damage to their health, or, in some cases, to prevent the patient from suffering significant pain or distress. (Rec 10.6)
The Tribunal should be able to approve “special healthcare” if satisfied it is necessary to save the patient’s life or prevent serious damage to the patient’s health. The new Act should specify that “serious damage to the patient’s health” may include damage to their psychological, emotional or physical health. Before the Tribunal can consent to sterilisation, it should have to be satisfied that the patient will not regain decision-making ability in the foreseeable future. (Rec 10.8)
The new Act should continue to allow the Tribunal to authorise a patient’s representative to consent to further special healthcare on a patient’s behalf after it gives consent in the first instance. (Rec 10.9)
The consent arrangements for “major healthcare” should effectively be the same as the current consent arrangements for “major treatment”. (Rec 10.11) HIV testing should not be included in the definition of “major healthcare”. (Rec 10.10) Reclassifying such testing as “minor healthcare” is consistent with efforts to promote testing and decrease the stigma around HIV.
The definition of “minor healthcare” should effectively mirror the current definition of “minor treatment”, as should the consent arrangements. (Rec 10.12 and 10.13)
The Tribunal or a person responsible should be able to consent to withholding or withdrawing a life-sustaining measure where doing so would be inconsistent with good medical practice, and the decision gives effect to the patient’s will and preferences. (Rec 10.14)
The new Act should include a broad definition of an “objection” to healthcare. This is important because an objection, however expressed, may represent the patient’s current will and preferences. The new Act should also clarify that a person can refuse treatment in a clear advance care directive that extends to the situation at hand. (Rec 10.15)
The Guardianship Act allows a patient’s objection to be disregarded if the patient has minimal or no understanding of what the treatment involves and the treatment will cause the patient no distress or reasonably tolerable and transitory distress. This standard does little to protect a patient’s autonomy and right to bodily integrity and does not align with the principles of the UN Convention. We recommend that the Tribunal should be able to authorise a representative to override a patient’s objection only where there would be an unacceptable risk to the patient if the healthcare was not given. However, the Tribunal should not be able to act if the patient has refused the healthcare in a valid advance health care directive. (Rec 10.16 and 10.17)
The “person responsible” for consenting to healthcare should be the first person in a hierarchy of people who is: reasonably available to make a decision; has decision-making ability; and has not, if asked, declined to make a decision. Any disputes about the person responsible should be able to be referred, if necessary, to the Public Advocate. (Rec 10.18) The new Act should clarify that a relative according to an indigenous kinship system falls within the definition of “close friend or relative”. (Rec 10.21) The person responsible should be required to make decisions that give effect to a patient’s will and preferences rather than simply having regard to the patient’s views when they make decisions. (Rec 10.22)
Any person with a sufficient interest in a patient’s health and personal and social wellbeing should still be able to ask the Tribunal to consent to healthcare for the patient. (Rec 10.23) The Tribunal should be able consent if satisfied that the proposed healthcare is the most appropriate form of healthcare, and consenting would give effect to the patient’s will and preferences. (Rec 10.24)
The provisions in the Guardianship Act about liability for giving treatment and clinical record keeping should be preserved. (Rec 10.25 and 10.26)
The offences in the medical and dental treatment provisions of the Guardianship Act should be preserved. There should be an offence relating to taking a child or an adult who does not have decision-making ability overseas to be sterilised. (Rec 10.27)
Medical research (Chapter 11)
We recommend removing Tribunal oversight of clinical trials and allowing the person responsible to consent to a patient participating in a medical research project approved by a human research ethics committee. (Rec 11.2)
This reflects the approach to tribunal involvement taken in both Victoria and the Australian Capital Territory, and addresses feedback that: • given the already rigorous approval process before an ethics committee, there is no need for a tribunal to approve medical research procedures, and • having two separate approval processes delays research projects and deters practitioners from conducting research in NSW. This has indirect disadvantages for people who do not have decision-making ability, who might otherwise benefit from the resulting advances in medical research.
These proposals seek to strike a balance between safeguarding the rights of participants who cannot consent to medical research procedures and ensuring that people who do not have decision-making ability can access healthcare and research on an equal basis; particularly new healthcare procedures that are only available in Australia through clinical trials.
We have adopted Victoria’s ‘medical research procedure’ terminology and definition. (Rec 11.1) It is preferable to the current ‘clinical trial’ terminology because the generally understood meaning of ‘clinical trial’ does not align with the areas of medical practice or research that the legislation regulates.
Under our recommendations, medical research practitioners must: • make reasonable efforts in the circumstances to find whether the participant has an advance care directive before they administer a medical research procedure (Rec 11.3), and • file a record with the Public Advocate when a participant without decision-making ability enrols in a medical research procedure. (Rec 11.6)
If there is no person responsible to consent to participation in a medical research procedure once it is approved by a human research ethics committee, the Tribunal should be able to give consent. (Rec 11.2)
The Guardianship Act requires that consent can only be given if the research is intended to help cure or alleviate a particular condition the participant has or is at risk of having. This requirement should be removed as it prevents people participating in research for altruistic reasons. (Rec 11.2)
The new Act should allow a patient to be included in research without prior consent where the procedure involves giving accepted emergency treatment that is needed as a matter of urgency to save their life or prevent serious damage to their health. (Rec 11.5) 0.102 The new Act should expressly prohibit research practitioners from conducting medical research on a patient who objects (Rec 11.4), and should create new offences for research practitioners who administer a medical research procedure without proper ethics approval and consent. (Rec 11.7) 0.103 An interested person should be able to apply to the Tribunal if they are concerned that participating in research does not align with a participant’s will and preferences, or promote their personal and social wellbeing. (Rec 11.2)
Restrictive practices (Chapter 12)
NSW should not yet regulate the use of restrictive practices in the disability sector, in light of the Commonwealth’s intention to do so through the NDIS. The specific and complex considerations that apply to using restrictive practices in the mental health and education sectors take such matters beyond the scope of this review.
In principle, we support consistent regulation of restrictive practices across NSW while recognising that certain differences in clinical contexts might lead to justifiable variations in regulation. We recommend that NSW monitor the implementation of the NDIS restrictive practices framework; first, to judge its effectiveness, and secondly, to consider if NSW should apply comparable regulation in state-regulated sectors. (Rec 12.1(1)) We suggest that the government give us a standalone reference on restrictive practices once the NDIS is rolled out and all details of the scheme are known. (Rec 12.1(3))
We support the Australian Law Reform Commission’s recommendation that the Commonwealth should regulate restrictive practices in residential aged care, and that the regulations should be consistent with those operating under the NDIS.
We are not persuaded that it is appropriate for regulations governing restrictive practices to apply to informal carers who lack training and support to implement positive behaviour supports. We have instead recommended that the Public Advocate have a role in educating families, carers and community groups to increase awareness of restrictive practices and the need to reduce and eliminate them. (Rec 12.1(2))
The Public Advocate (Chapter 13)
0.108 There should be a new independent statutory position known as the Public Advocate to advocate for people in need of decision-making assistance, mediate decision-making disputes, provide information, advice and assistance about decision-making and investigate cases of potential abuse, neglect and exploitation.
Currently the Public Guardian performs some, but not all of these functions, and is largely limited to helping people under guardianship. The new Act should introduce new functions for a Public Advocate, in part to address the potential need for advocacy and investigative powers as state services are transferred to non-government organisations under the NDIS. (Rec 13.1(1) and (2))
The Public Advocate and the Public Representative should be combined to form a single agency with dual functions, under the name of the Office of the Public Advocate. This would allow a full range of response options depending on the situation at hand. The Public Advocate should have security of tenure, a dedicated staff and a duty to report to Parliament.
The new Act should set out the functions of the Public Advocate. (Rec 13.1(3)) Some of the recommended functions have proved useful and effective in other states and territories. Others specifically support elements of the new framework; for example, the function of setting standards and guidelines for supporters.
Provisions of general application (Chapter 14)
Some of our recommendations apply generally across the new Act. They clarify and expand upon existing provisions of the Guardianship Act while removing some unnecessary provisions.
The new Act should not require registration of any agreement or order. Although many submissions support a registration system, opinion is divided on whether it should be optional or mandatory, and a number argue that a register would not adequately address cases of fraud. Privacy concerns are also raised. Our research into comparable registration schemes in other jurisdictions did not convince us that the potential benefits outweigh the likely problems. We do not intend to affect any existing provisions that require or allow for registration. (Rec 14.9)
The new Act should extend to all representatives and supporters the existing provisions that allow a guardian to apply to the Tribunal for directions about exercising their functions. Representatives and supporters should not be liable for any acts or omissions carried out in good faith in accordance with such a direction. (Rec 14.1)
Supporters, representatives and third parties who rely on an agreement or order in good faith and without knowing the agreement or order does not have effect, should be protected from liability. (Rec 14.4)
A representative, person responsible or supporter should be entitled to access any information that the person they are representing or assisting would be able to access provided it is also relevant to and necessary for carrying out their functions. (Rec 14.2)
The new Act should be consistent with provisions that prohibit anyone disclosing information obtained in connection with the administration or execution of the Guardianship Act. The list of exceptions to this rule should be expanded, in particular, to allow the person to authorise the disclosure of information about themselves. This recognises that a person may have the ability to make some decisions but not others, and that a person can make a decision with appropriate support. Permitting disclosure to prevent serious harm or to report a serious offence is a common exception to privilege and confidentiality provisions elsewhere. (Rec 14.3)
Substitute decision-makers, such as representatives or persons responsible, who share decision-making functions and cannot resolve a disagreement informally should be able to ask the Tribunal to direct them to undertake alternative dispute resolution. For example, this could happen when joint representatives cannot reach a majority decision, or when representatives with different functions (such as financial and personal functions) need to align their decisions. (Rec 14.5)
The new Act should not make separate provision for people who need help exercising their rights under adoption laws. Part 4A of the Guardianship Act, which relates to adoption information under the Adoption Act 2000 (NSW), currently provides separate arrangements to help such people. Omitting such provisions will not prevent people from exercising their rights through the assisted decision-making arrangements under the new Act. (Rec 14.6)
The new Act should incorporate the miscellaneous provisions in part 9 of the Guardianship Act that have not otherwise been the subject of a recommendation. These include provisions about service of notices, the offences of obstruction and false or misleading statements, and procedural matters. (Rec 14.7)
The Supreme Court (Chapter 15)
The Supreme Court of NSW has a range of powers to deal with people who may be in need of the Court’s protection, including its inherent protective jurisdiction, and powers given by various Acts including the Guardianship Act and the NSW Trustee and Guardian Act 2009 (NSW). The Court also has powers to review administrative decisions made under these Acts and to hear appeals against some decisions of the Guardianship Division of the NSW Civil and Administrative Tribunal.
The new Act should preserve the Court’s inherent protective jurisdiction. (Rec 15.1)
Provisions in the Guardianship Act are inconsistent in dealing with applications made in the Supreme Court as well as in the Tribunal for guardianship orders and financial management orders. Such provisions should be aligned and expanded to clarify what should happen when the Tribunal and the Supreme Court make orders or receive applications about the same matters. (Rec 15.2 and 15.3)
Tribunal composition and procedure (Chapter 16)
We recommend some Tribunal procedures be reformed, while others should stay the same. We seek to strike the right balance between safeguarding people who are the subject of proceedings, while ensuring that the Tribunal remains a forum for the quick, inexpensive and informal resolution of disputes. We recommend: • There should be no change to the composition of Tribunal panels. (Rec 16.1) • The new Act should clarify when a young person may be a party to a proceeding. (Rec 16.2) • The appointment process for parents of people who do not have decision-making ability, where this has been the case since before the person turned 18, should continue to be the same process as the appointment process for other representatives. (Rec 16.3) • The Tribunal should review its internal procedures to ensure that registry staff make reasonable efforts to ensure that all people with a genuine interest in the welfare of the subject person are notified of an application and the outcome of the hearing. Notice and service requirements should otherwise remain the same. (Rec 16.4) • A legal representative of the person who is the subject of an application before the Tribunal should be able to appear without seeking leave. (Rec 16.5) • Separate representatives must act according to the general principles of the new Act. (Rec 16.5) • The Tribunal should consider whether its procedures need to require parties to a hearing to give their evidence under oath or on affirmation where the Tribunal considers there are material facts in dispute. (Rec 16.6)
Powers of entry, search and removal (Chapter 17)
0.125 The new Act should include a mechanism for removing people in need of decision-making assistance from premises when they are at immediate risk of unacceptable harm and the harm can be mitigated by removal from those premises. We anticipate that this mechanism will be used in very limited circumstances. (Rec 17.1) 0.126 This recommendation replaces and updates the existing provisions in the Guardianship Act to reflect better the approach of the new Act. It should also deal better with addressing risks of immediate harm that cannot be dealt with effectively by applying to the Tribunal for an order or an emergency order.
Interaction with mental health legislation (Chapter 18)
The new Act should interact effectively with the Mental Health Act 2007 (NSW) (“Mental Health Act”) and the Mental Health (Forensic Provisions) Act 1990 (NSW) (“Mental Health (Forensic Provisions) Act”).
Provisions in the new Act should: • make clear that matters addressed by orders under the Mental Health Act and Mental Health (Forensic Provisions) Act prevail over orders or agreements for supported decision-making or representation and that such orders or agreements continue to function in areas that are not the subject of orders pursuant to the Mental Health Act and Mental Health (Forensic Provisions) Act (Rec 18.1 and 18.2) • establish that the authorised medical officer of a mental health facility makes decisions in relation to the “mental health treatment” only (Rec 18.3) • implement a uniform regime for administering special treatment (Rec 18.4) • clarify the process of admitting and discharging voluntary patients including prohibiting voluntary admission of patients at the request of their representatives where the patient objects, (Rec 18.5) and • leave arrangements for financial decision-making, if required, to the provisions of the new Act rather than the Mental Health Review Tribunal. (Rec 18.6)
Recognising appointments made outside NSW (Chapter 19)
0.129 Currently, the Guardianship Act automatically gives effect to the appointment of an enduring guardian (or similar) appointed outside NSW. Guardians or financial managers (or similar) who have been appointed by a tribunal or court outside NSW must apply to the Tribunal to have their status formally recognised. This process is consistent with other jurisdictions and we think it should remain. (Rec 19.1)
New provisions about the recognition of representatives that have been appointed outside of NSW should clarify the effect of such recognition. (Rec 19.2) 0.131 The Tribunal should have a new power to review orders and personal appointments made outside NSW, including where there is an allegation of abuse of powers. (Rec 19.3) This would allow the Tribunal to appoint a new representative or supporter in circumstances of abuse.
There should not be a register for orders and personal appointments made outside of NSW. (Rec 19.4) It would be unfair to impose the burden on guardians or managers from other jurisdictions when NSW does not have a system of registration for NSW appointed substitute decision-makers.
Transitional provisions and consequential amendments (Chapter 20)
We recommend preserving orders and arrangements made under old legislation until they come up for review.
Existing guardianship orders should remain in place until they come up for periodic review (generally within three years). The Tribunal should be required to review all existing financial management orders within a certain period (for example, six years), depending on what is realistically manageable. (Rec 20.1) The Tribunal’s considerations and actions upon review should be broadly consistent with their review powers under comparable provisions of the new Act. (Rec 20.2)
Existing enduring guardianship arrangements and enduring power of attorney arrangements should simply remain in place. (Rec 20.3) The Tribunal’s considerations and actions upon review of enduring arrangements should be broadly consistent with their review powers under comparable provisions of the new Act. (Rec 20.4)
All existing guardians and financial managers should be bound by the general principles of the new Act from its commencement. (Rec 20.5)
Consequential amendments should be made to other NSW statutes to ensure consistency with the new Act. A comprehensive audit of guardianship-related language in other NSW statutes should be undertaken. (Rec 20.6)
