Adults with a temporary or permanent incapacity

Presuming capacity

70.29 The common law recognises—as a ‘long cherished’ right—that all adults must be presumed to have capacity until the contrary is proved. Where capacity is contested at law, the burden of proof lies with the person asserting the incapacity.[42]

70.30 A clear legislative statement on the presumption of capacity has been incorporated into guardianship and administration legislation in some jurisdictions. The Queensland legislation has the simple statement, included in the principles that apply across the Act, that ‘An adult is presumed to have capacity for a matter’.[43] The Western Australian provision is more complex:

Every person shall be presumed to be capable of —

(i) looking after his own health and safety;

(ii) making reasonable judgments in respect of matters relating to his person;

(iii) managing his own affairs; and

(iv) making reasonable judgments in respect of matters relating to his estate, until the contrary is proved to the satisfaction of the State Administrative Tribunal.[44]

70.31 In a recent discussion paper on capacity, the New South Wales (NSW) Attorney General’s Department asked for feedback on whether it was necessary to include the presumption in legislation.[45] A number of submissions in response to that discussion paper supported the inclusion of a decision-specific presumption of capacity in all relevant guardianship-related legislation in NSW.[46]

70.32 In the Discussion Paper, Review of Australian Privacy Law (DP 72), the ALRC asked whether the Privacy Act should be amended to include a presumption of capacity.[47]

Submissions and consultations

70.33 There were mixed views expressed in submissions on whether a presumption of capacity should be incorporated into the Privacy Act. A number of stakeholders supported a legislative provision in order to clarify in the Privacy Act the operation of the presumption. Legal Aid Queensland stated that:

despite anti-discrimination legislation in every state and territory as well as Commonwealth legislation, individuals’ access to information is restricted or made more difficult by organisations that make arbitrary assessments about whether the individual seeking information has capacity. In our view a statement in the Privacy Act that clarifies this issue would significantly assist individuals.[48]

70.34 Others considered that, as a common law presumption already exists, there is no need to include a legislative presumption in the Privacy Act.[49] Privacy NSW indicated that, rather than being set out in the Privacy Act, a presumption could be incorporated into rules to be developed by the OPC.[50]

70.35 A number of stakeholders indicated that the consideration of the capacity of individuals must be undertaken in a broader context than that arising under the Privacy Act.[51] The Department of Human Services warned that capacity issues in a privacy context are related to capacity issues in many administrative decisions that are required to be made when clients interact with service delivery agencies.

Any policy development in this area in relation to legislative presumptions regarding consent should be able to be replicated in relation to those other administrative decisions. Accordingly, the Department proposes that a whole of Government response be developed in relation to this proposal, which may ultimately proceed in separate legislation to the Privacy Act.[52]

70.36 The Law Society of NSW indicated that agencies and organisations collecting sensitive information should not rely on a presumption, but be required to explore the capacity of the individual.[53]

ALRC’s view

70.37 The presumption of capacity is an accepted part of the common law in all Australian jurisdictions. The ALRC acknowledges that decisions regarding the handling of personal information are often made in conjunction with many other decisions, all of which may involve considerations of capacity. Given that there are already at least two differing forms of the legislative presumption applying in Australian jurisdictions, the creation of another different (albeit similar) legislative statement, to apply only in the context of the Privacy Act, has the potential to create confusion and further add to fragmentation of guardianship and administration laws.

70.38 The presumption of capacity, however, is an important element of the effective operation of the Privacy Act. The existence and application of the presumption of capacity should be addressed in guidance to be developed and published by the OPC.[54]

Assessing capacity

70.39 In DP 72, the ALRC proposed that the Privacy Act should be amended to provide that if an individual is found to be incapable of making a decision under the Privacy Act, an authorised representative may make the decision on behalf of the individual.[55] Proposal 61–1 incorporated a test for determining capacity of the individual, based on similar provisions in the Health Records Act 2001 (Vic) and the draft National Health Privacy Code.[56] The effect of the proposal was to require assessment of capacity in relation to each decision to be made under the Privacy Act.

Submissions and consultations

70.40 Many stakeholders supported a specific mechanism in the Privacy Act to clarify arrangements for substitute decision making for people with impaired capacity.[57] Some stakeholders acknowledged that capacity is not always easy to assess. It can change and alter over time and may be contextual.

Capacity is decision specific and impairment of decision-making capacity for some matters (that is, a person has impaired capacity for some types of financial or personal decisions and not others) only is typical. Adults with mental illness will typically have an episodic impairment of their capacity for decision-making. Even during periods when they are unwell, they will typically have capacity for decision-making about some types of matters but not others. Adults with acquired brain injury typically do not identify themselves as having a disability and often present well unless their plausibility is tested, but nevertheless they may have markedly impaired decision-making capacity as a result of gross impulsivity. Again, however, they may be able to make some types of decisions. Adults with dementia typically progress from early dementia, when they may retain or have fluctuating capacity for decision-making for many matters, but progressively become incapable of making decisions about matters.[58]

70.41 A number of stakeholders gave express support for the adoption of a decision-specific assessment of capacity, and the test of capacity proposed in DP 72.[59] Others, however, criticised the requirement that agencies and organisations be required to undertake an assessment of capacity. The Australian Direct Marketing Association (ADMA), for example, indicated that the proposals create a ‘layer of complexity and difficulty’; and noted that the assessment of capacity in the context of a direct marketing approach is virtually impossible.[60] Similarly, the Law Council of Australia indicated it did not support the proposals, as they do not contemplate the inability to make an assessment in the online environment and other environments in which there is no direct contact with the customer.

70.42 Even some stakeholders that supported the decision-specific assessment approach, acknowledged the difficulty involved in frontline staff of agencies and organisations (perhaps with the exception of health service providers) making an adequate assessment.[61] Carers Australia indicated that assessment of capacity is complex even for trained professionals.[62] The Australian Bankers’ Association (ABA) supported the principle that staff should be able to recognise and act upon obvious cases of reduced capacity, but cautioned that bank staff should not be required to make assessments about capacity that would ordinarily be made only by a qualified medical practitioner or psychologist.[63]

70.43 Carers Australia highlighted the need for an appropriate balance between the administrative burden of assessing capacity and the possible consequences of the decision. It suggested that where the impact of the collection, use or disclosure of personal information is minimal, the process to determine capacity could be undertaken relatively quickly and easily, and a more rigorous process used where the potential impact is greater.[64]

70.44 The NSW Guardianship Tribunal had concerns about the proposed provisions, and questioned how an assessment of lack of capacity under the Privacy Act would interact with general guardianship laws.

Does it mean that if a particular agency assesses a person as being incapable of making a particular privacy decision that this decision will then constitute a ‘finding’ of incapacity? How long will that ‘finding’ operate? Alternatively, does it mean that the presumption [of incapacity] can only be displaced by a formal finding, such as a determination by a Court or tribunal about the capacity to make a specific privacy decision? Which court or tribunal would make such a finding? The Tribunal has concerns that using the guardianship system to make such findings is unnecessarily legalistic and an inappropriate use of tribunal resources.[65]

70.45 The Tribunal also noted that the ALRC’s proposals did not provide a mechanism for resolving disputes over decisions relating to capacity. It suggested that if the OPC is involved in resolving such disputes, it must be supported by a multi-disciplinary panel to deal with the complex issues likely to arise.[66]

70.46 Some stakeholders suggested that the proposal should be reworded. The OPC had concerns about the phrase ‘or any other circumstance’ in defining the reasons why an individual might be found to be incapable of making a decision. The OPC suggested that the term is too broad and might be interpreted in a way that is inconsistent with the ALRC’s intention. Further explanatory material on the meaning of the term was supported.[67] The Public Interest Advocacy Centre (PIAC) suggested that the term ‘reasonable assistance from another person’, which aims to ensure that individuals are given the maximum opportunity to make decisions on their own behalf, might preclude automated or electronic assistance. It suggested the term be replaced with ‘despite the provision of all reasonable and appropriate steps being taken to provide assistance’.[68]

70.47 Medicare Australia and Privacy NSW suggested that putting the test of capacity into guidelines would provide greater flexibility in developing practices relevant to the context of the agency or organisation.[69] Privacy NSW noted that:

The matters for consideration will differ according to each case and an assessment of capacity to consent should be measured on a sliding scale of factors, some of which relate to age, the ability to communicate consent, the individual’s understanding of the issue in question, support from parents or other authorised representatives and the context in which the issues arise.[70]

ALRC’s view

70.48 The ALRC received no indication during this Inquiry that the provisions incorporating a test of capacity in the Health Records Act 2001 (Vic) and Health Records and Information Privacy Act 2002 (NSW),[71] on which Proposal 61–1 was based, have caused problems in practice. This may be because their operation is limited to health information, and it is more likely in the health services context to have one-on-one assessments by medical professionals who may be better trained and more experienced in making assessments of capacity.

70.49 The ALRC acknowledges that it is difficult to expect frontline staff of agencies and organisations to assess an individual’s capacity to make decisions. Assessment of capacity is a complex task, and there is extensive debate in the guardianship and administration community about who is best positioned to make such an assessment, and what guidelines should be followed.[72] Most assessments will rely, at least in part, on a medical assessment. As the concept of incapacity is a legal concept, however, some argue that neither a medical nor a legal professional alone is equipped to make a true finding of incapacity.[73] The Older People and the Law report recommended that SCAG and the Australian Health Ministers’ Conference develop and implement a nationally consistent approach to the assessment of capacity.[74]

70.50 The ALRC also agrees that making a ‘finding’ of incapacity can be problematic for the individual, and could have follow-on legal ramifications for the individual. It is not the ALRC’s intention that a finding of incapacity for the purposes of the Privacy Act should have an impact on the assessment of the individual’s capacity for the purposes of the guardianship and administration regime. This would be inappropriate, particularly where the finding is made by a person not trained to make such a finding.

70.51 While there are real difficulties in the assessment of capacity, the ALRC also notes that, in practice, staff in any agency or organisation must be aware of, and able to recognise, capacity issues when dealing with members of the public. This is not limited to decisions relevant to the Privacy Act, but relates to all interactions, including opening bank accounts, entering into contracts, and consenting to medical treatment.

70.52 A test for the assessment of capacity should not be set out in the Privacy Act—it is better that these issues be dealt with in guidance developed by the OPC.[75] The guidance should draw on relevant state and territory guardianship and administration legislation that contain definitions of ‘capacity’, and clarify that these laws apply in the context of the Privacy Act. Agencies and organisations should not be expected to make an assessment of capacity of an individual, but must be alert to the possible occurrence of issues concerning capacity, and take such issues into account.

70.53 The ALRC acknowledges that reliance on state and territory legislation that varies from jurisdiction to jurisdiction is not ideal. The task would be made simpler if, as recommended by the House of Representatives Standing Committee on Legal and Constitutional Affairs, uniform legislation was in place with a uniform test for assessing capacity.[76] The inclusion of separate provisions in the Privacy Act, however, would ultimately fragment the law on capacity, creating even further confusion and complexity for agencies and organisations.

Recognising substitute decision makers authorised by another law

70.54 A third party may be authorised to act as a substitute decision maker by a federal, state or territory law in the following ways:

  • appointment by a power of attorney—which lapses if the individual loses capacity;[77]

  • appointment under an enduring power of attorney, an instrument of enduring guardianship, or a medical power of attorney—depending on the state or territory, these could cover financial, health or lifestyle decisions;[78]

  • appointment as a guardian by a tribunal or board;[79]

  • appointment by a tribunal, board or court as an administrator, financial manager or manager;[80] and

  • authorisation by a statute to make decisions on behalf of an individual in certain circumstances.[81]

70.55 So long as the extent of the authorisation given by the instrument, appointment or relevant legislation covers matters that are related to the personal information in question, agencies and organisations operating under the Privacy Act should recognise these authorisations and allow the person to act as the substitute decision maker for the individual. The substitute decision maker ‘stands in the shoes’ of the individual, and therefore can provide consent or refuse to provide consent, and have access to information, as if he or she is the individual being represented.[82] Concerns raised in submissions made in response to the Issues Paper Review of Privacy (IP 31)[83] indicated that this is not always happening in practice.

70.56 In DP 72, the ALRC proposed a definition of ‘authorised representative’.[84] The purpose of the definition was to bring under one definition the multitude of third parties that are authorised by other federal, state or territory laws to make decisions on behalf of an individual who lacks capacity. The proposal was based on the definition of authorised representative in the draft National Health Privacy Code,[85] which in turn is based on definitions in the Health Records and Information Privacy Act 2002 (NSW) and Health Records Act 2001 (Vic).

Submissions and consultations

70.57 There was support in submissions for including provisions in the Privacy Act to ensure that substitute decision makers authorised by another law are recognised for the purposes of the Privacy Act.[86] Most concerns raised about the ALRC’s proposal related to the wording of the definition.[87]

70.58 As an overall concern, a number of stakeholders highlighted the need to ensure the legislation is not overly complex. The Human Rights and Equal Opportunity Commission noted that the regime must not make it difficult for frontline staff to be able to determine whether someone can act on behalf of another.[88] Similar concerns were raised by GE Money.

GE considers that it is essential that there is certainty in relation to which individual or individuals may act on behalf of a person who lacks capacity as this protects the vulnerable individual while also allowing the organisation to be sure that it has met its legal obligations … In a large organisation with tens of thousands of customers or more it is essential that front line workers have clear rules that are applied to ensure compliance and protection of [an] individual’s personal information. Categories of authorised representative must be able to be determined quickly and clearly in any situation.[89]

70.59 Some stakeholders also suggested that there should be a hierarchical list of persons able to be recognised as an authorised representative. This would clarify the procedure to be followed where two or more recognised authorised representatives purported to make decisions on behalf of the individual.[90] It was noted, however, that a standard hierarchy may not be appropriate in all cases. In particular, certain ethnic or Indigenous communities may require a more flexible approach to the recognition of ‘authorised representatives’.[91]

ALRC’s view

70.60 Substitute decision makers already are empowered by relevant federal, state or territory law to act on behalf of an individual. That law, and where relevant the specific terms of the appointment, will determine whether a third party is able to make decisions on behalf of an individual for the purposes of the Privacy Act. It is not necessary for the Privacy Act to provide an additional hurdle to the recognition of that substitute decision maker.

70.61 The ALRC acknowledges that some agencies and organisations do not give appropriate recognition to substitute decision makers authorised by law. The problem appears to stem from a lack of understanding of the guardianship and administration and power of attorney laws that apply in each state and territory, a problem that was highlighted by the Older People and the Law report.[92] The examples of poor practice, and the complexity of the operation of these laws across state and territory boundaries, influenced the ALRC’s attempt, in DP 72, to clarify that legally appointed third parties be recognised specifically for the purposes of the Privacy Act.

70.62 Some of the concerns arising from the lack of recognition of substitute decision makers authorised by law can be addressed through appropriate guidance. The ALRC recommends below that the OPC develop and publish guidance to cover these issues.[93] Ultimately, the development of uniform laws for guardianship and administration regimes, including powers of attorney, will be the most effective step in resolving some of these practical issues. The ALRC endorses the recommendations in the Older People and the Law report for uniform laws in this area.[94]

Limits on the liability of agencies and organisations

70.63 If agencies and organisations do not give appropriate recognition to authorised substitute decision makers, the privacy of the individuals being represented may be compromised, and their access to essential services and benefits may be affected. Agencies and organisations, however, must take steps to ensure that only authorised third parties have access to personal information about individuals. As indicated above, this is not an easy task given the myriad of instruments, legislative provisions and appointments that exist.

70.64 In DP 72, the ALRC proposed that the Privacy Act should limit the liability of agencies and organisations that rely on a decision of an authorised representative who has exceeded his or her authority, provided that the agency or organisation has taken reasonable steps to validate the authority of the authorised representative.[95]

70.65 A number of key stakeholders supported the proposal.[96] For example, PIAC noted:

Without this provision, there is a danger that agencies and organisations might adopt an overly-cautious, risk-averse approach when dealing with persons with decision-making disabilities and their authorised representatives. This type of approach could impact adversely on service provision.[97]

70.66 While the ALRC considers that the approach outlined in DP 72 strikes an appropriate balance between facilitating recognition of authorised substitute decision makers and safeguarding against risk of abuse, the ALRC has concluded that the Privacy Act is not the right place to insert such a limitation. The issue is not confined to the area of privacy and therefore should be considered as a part of a review of guardianship and administration regimes more generally.

Recognising informal representatives

70.67 In DP 72, the ALRC proposed a definition of ‘authorised representative’ that encompassed only third parties authorised by another law as a substitute decision maker. The ALRC excluded from the definition informal care relationships that are not covered by any legally recognised appointment, whether through some form of power of attorney, or the more formal appointment of a guardian or administrator by a state or territory tribunal, board or court.

Submissions and consultations

70.68 Several stakeholders were concerned that the proposed definition of ‘authorised representative’ was too narrow, because it did not recognise informal care relationships.[98] This concern was raised by groups and organisations that regularly represent adults with impaired capacity and their carers, and agencies and organisations that provide services to individuals and their carers. These agencies and organisations, particularly in areas related to health information, acknowledged that they rely regularly on decisions made by family and informal carers. For example, Avant Mutual Group noted:

Consideration needs to be given to adding to the list of authorised representatives some or all of the persons who, acting as the person responsible, can consent to treatment on behalf of the incapacitated person. If for example a spouse, family member or close friend or carer is making decisions for the incapacitated person when it comes to their medical care then so long as any privacy issues relate to the maintenance of the incapacitated person’s health and/or is otherwise for their benefit they should be able to consent, request or exercise a right of access, as necessary.[99]

70.69 The Department of Foreign Affairs and Trade (DFAT) noted that it regularly deals with Australians who have become incapacitated while travelling overseas, either through illness or injury. DFAT indicated that, in such circumstances, it takes instructions from next of kin or close family members of those individuals.

[A] situation may arise where an individual is ill and incapacitated overseas, and there is certain health or other information which is held by the individual’s next of kin which, if passed to the relevant authority overseas by an Australian consular officer, would be of benefit to the individual. In this situation, the Department would need to collect the personal information about the individual from the next of kin in order to pass it to the relevant authorities. While UPP 5.1(c) allows for the disclosure of personal information in order to lessen or prevent a serious threat to life, health or safety of the person or the public, there may be situations where no serious threat is apparent, but the disclosure of information would be of benefit to the individual concerned. In such cases, the consent of the next of kin should be enough to allow the disclosure.[100]

70.70 Carers Australia expressed concerns about any individual rights-based approach that fails to recognise that private information about an individual often is intricately associated with others. It noted that the extent to which people choose to share information typically varies in accordance with the closeness and degree of the relationship.

Caring relationships, by their very definition, involve carers doing things for others (often intimate things) that people are not able to do for themselves due to illness, injury or physical or cognitive disability. While the integrity of each person within the relationship can not be denied, some recognition of the nature of this relationship is warranted. Currently, the privacy legislation fails to recognise the uniqueness of the caring relationship. It can mean that carers do not have access to essential information to act on another person’s behalf nor do they receive necessary information to provide the care expected from them. At times, the current privacy laws and their interpretation can make it extremely difficult for a carer to take action to support the person for whom they care. This includes support in relation to financial and health matters, or support for essential changes to living arrangements. In doing so, the Australian Privacy Law fails people with disability, illness or injury and those family and friends who provide care to them.[101]

70.71 A number of stakeholders suggested that the effect of the ALRC’s proposed definition of authorised representative would be that—contrary to the intention of state and territory guardianship and administration laws which are based on adoption of the least restrictive option available—organisations and agencies may force carers to obtain a formal care appointment.[102] As noted by Carers Australia, ‘it would be absurd to ask the adult child of an ageing parent with dementia to become an administrator when all they merely want to do is to assist their parent with enquiries related to utilities’.[103]

70.72 It was suggested that the Privacy Act could incorporate the concept of ‘person responsible’, as exists in guardianship legislation in a number of jurisdictions, to encourage and support informal care relationships.[104] The New South Wales legislation, which establishes a hierarchy, was given as an example. In the Guardianship Act 1987 (NSW), a ‘person responsible’ for another person (other than a child) is defined as:

(a) the person’s guardian, if any, but only if the order or instrument appointing the guardian provides for the guardian to exercise the function of giving consent to the carrying out of medical or dental treatment on the person,

(b) the spouse of the person, if any, if:

(i) the relationship between the person and the spouse is close and continuing, and

(ii) the spouse is not a person under guardianship,

(c) a person who has the care of the person,

(d) a close friend or relative of the person.[105]

70.73 It is important to note, however, that the ability of a ‘person responsible’ to make decisions on behalf of the individual is at present limited in state and territory legislation to decisions relating to medical and dental treatment that is not classed as special treatment or treatment in the course of a clinical trial.[106] Carers Australia also submitted that these provisions are not systematically recognised or understood.[107]

70.74 The need to make reporting and accountability requirements proportionate to the level of risk was noted by Carers Australia.[108] The NSW Guardianship Tribunal also highlighted the fact that

it does not follow that because a person is able to access personal information that they will then be able to carry out other actions, for example, a person who is given information about a person’s bank accounts does not have authority to operate that account or to access those funds.[109]

70.75 One suggestion was to allow for informal arrangements in situations where individuals need to conduct essential business on a day-to-day basis. Examples given included making small bank withdrawals (up to $100 per fortnight), answering surveys on consumer preferences, and buying lottery tickets.[110] It also was suggested that more stringent requirements should apply where serious consequences may flow from disclosure of personal information. For example, more stringent identification requirements should be required for financial matters where there is a greater risk of abuse, and a limit of $5,000 should be placed on the amount of any such transaction.[111]

70.76 On the other hand, some stakeholders were opposed to any expanded recognition of authorised representatives, beyond that recognised by state or territory guardianship and administration legislation. The ABA noted that its members also are bound by the bankers’ duty of confidentiality, and that stringent identification checks are necessary. The ABA considered that it would be safer ‘for all concerned’ if an order or authority for the purposes of the Privacy Act were obtained under guardian and administration legislation.[112]

70.77 The NSW Disability Discrimination Legal Centre also opposed allowing informal representatives to act as authorised representatives in relation to non-health related personal information.[113] While acknowledging the problems faced by informal representatives, the Centre considered that the solution is not to dilute the protections of the Privacy Act, which might leave a vulnerable person open to abuse. Research estimates that 4.6% of older people experience physical, sexual or financial abuse.[114] It is thought that, in most cases, the perpetrators of abuse are family members or someone who is in a duty of care relationship with the older person. A number of stakeholders noted, however, that risky and abusive practices can be associated with any form of care, whether it be informal, semi-formal or formal.[115]

70.78 The NSW Guardianship Tribunal suggested a number of options that could be introduced to bolster remedies against abuse, if more informal relationships were recognised in the Privacy Act, including:

  • providing penalties or offences in the Act for the misuse of information gained by an authorised representative;

  • giving agencies a discretion not to release information to a responsible person if there are concerns about abuse; and

  • enabling agencies to make an application to the relevant guardianship tribunal, or make a referral to the relevant public advocate (if available in the state or territory), if concerned about abuse.[116]

70.79 Other stakeholders indicated that existing definitions of ‘person responsible’ in state and territory guardianship legislation do not go far enough. For example, while existing definitions generally exclude paid carers, hired carers are often authorised to go to a pharmacy to collect medication or otherwise carry out tasks on behalf of the individual they are caring for.[117] Organisations providing housing and care services for persons with a disability—including nursing homes—also regularly act for individuals although they are not legally appointed representatives.[118] Recognition of carers under the age of 18—a common situation where a parent or sibling has a mental health illness—was also an issue of concern.

Options for recognising informal representatives

70.80 Assistance to people with a decision-making disability most commonly occurs through informal processes. As noted above, such assistance is encouraged by Australian guardianship and administration regimes. A Queensland study found that a third of the population has provided asset management assistance to an older person or a person with a disability. Approximately 83% of people providing such assistance did so through informal arrangements, with only 15.4% using an enduring power of attorney and 1.4% using administration orders.[119] Carers Australia suggested that the use of formalised arrangements for the management of personal affairs (as distinct from financial affairs) would be at an even lower level.[120]

70.81 The Guardianship and Administration Act 2000 (Qld), which implemented the recommendations of the Queensland Law Reform Commission report Assisted and Substituted Decisions,[121] recognises that power may be exercised on behalf of an adult with impaired capacity on an informal basis by members of the adult’s existing support network.[122] A decision by an informal decision maker may be ratified or approved by the Guardianship and Administration Tribunal.[123] This is the most proactive provision in Australian guardianship and administration legislation for recognition of informal decision making.

70.82 A number of Australian jurisdictions have now adopted a mechanism for authorising a ‘person responsible’ to make decisions on behalf of an individual without the need for a formal appointment.[124] While the definition varies slightly from jurisdiction to jurisdiction, these provisions recognise that family members, close friends and others providing care (other than for remuneration) can make decisions when the individual is unable to do so. As noted above, these provisions apply only in relation to decisions regarding medical and dental treatment.

70.83 Overseas jurisdictions have taken a different approach. In the United Kingdom, a ‘best interests’ approach has been adopted, which acknowledges that informal carers regularly carry out routine acts and make decisions on behalf of individuals. Section 5 of the Mental Capacity Act 2005 (UK) provides limited statutory protection from liability for carers and professionals. The protection extends to certain acts performed in connection with the personal care, healthcare or treatment of a person lacking the capacity to consent to those acts. It must be shown that the action was in the best interests of the individual and consistent with the principles set out in the Act.[125] Carers or professionals are not vested with any specific powers or authority to made decisions on behalf of the individual, but are protected from personal liability if their decisions or actions are challenged.

ALRC’s view

70.84 Obviously the Privacy Act should not allow a third person to have the unfettered ability, without some form of legal authority, to access information about, and make decisions on behalf of, an individual. Even if a limited list of appropriate third persons were set out in the Privacy Act (eg, family and carers), this would authorise those third persons to obtain information about, and act on behalf of, the individual without his or her knowledge or consent. While some stakeholders have suggested that this is appropriate for married persons and other family members, such an approach would conflict with the individual-rights focus of the Privacy Act and introduce an unacceptable risk of interference with an individual’s privacy. The risk would apply not only to vulnerable persons, but to any individual.

70.85 If an informal representative has been authorised (ie, nominated) by the individual to act on his or her behalf, however, this should be acknowledged for the purposes of the Privacy Act. This approach, based on the consent of the individual, is consistent with the individual rights focus of the Privacy Act and provides a remedy for individuals and their informal representatives where incapacity is anticipated and the nomination is made prior to the loss of capacity.

70.86 The ALRC’s recommendations in relation to nominees are discussed in detail below.

[42] Masterman-Lister v Brutton & Co [2003] 3 All ER 162, 169; L v Human Rights and Equal Opportunity Commission (2006) 233 ALR 432.

[43] Guardianship and Administration Act 2000 (Qld) sch 1, pt 1. See also s 7(a). This is similar to the relevant United Kingdom legislation which states that ‘A person must be assumed to have capacity unless it is established that he lacks capacity’: Mental Capacity Act 2005 (UK) s 1(2).

[44] Guardianship and Administration Act 1990 (WA) s 4(2)(b).

[45] Attorney General’s Department of New South Wales, Are the Rights of People Whose Capacity is in Question Being Adequately Promoted and Protected? (2006), 25.

[46] See, eg, Disability Council of New South Wales, Submission to the Attorney General’s Department of New South Wales on Discussion Paper ‘Are the Rights of People Whose Capacity is in Question Being Adequately Promoted and Protected?’ June 2006; People with Disability Australia Inc and Blake Dawson Waldron, Submission to the Attorney General’s Department of New South Wales on Discussion Paper ‘Are the Rights of People Whose Capacity is in Question Being Adequately Promoted and Protected?’ June 2006; Mental Health Co-ordinating Council, Submission to the Attorney General’s Department of New South Wales on Discussion Paper ‘Are the Rights of People Whose Capacity is in Question Being Adequately Promoted and Protected?’ 5 July 2006.

[47] Australian Law Reform Commission, Review of Australian Privacy Law, DP 72 (2007), Question 61–1.

[48] Legal Aid Queensland, Submission PR 489, 19 December 2007. See also Government of South Australia, Submission PR 565, 29 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; National Legal Aid, Submission PR 521, 21 December 2007; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; ACT Government Department of Disability, Housing and Community Services, Submission PR 495, 19 December 2007; Office of the Victorian Privacy Commissioner, Submission PR 493, 19 December 2007.

[49] GE Money Australia, Submission PR 537, 21 December 2007; Queensland Government, Submission PR 490, 19 December 2007; Avant Mutual Group Ltd, Submission PR 421, 7 December 2007.

[50] Privacy NSW, Submission PR 468, 14 December 2007.

[51] Australian Bankers’ Association Inc, Submission PR 567, 11 February 2008; Australian Government Department of Human Services, Submission PR 541, 21 December 2007; GE Money Australia, Submission PR 537, 21 December 2007.

[52] Australian Government Department of Human Services, Submission PR 541, 21 December 2007.

[53] Law Society of New South Wales, Submission PR 443, 10 December 2007.

[54] Rec 70–3.

[55] Australian Law Reform Commission, Review of Australian Privacy Law, DP 72 (2007), Proposal 61–1.

[56] Health Records Act 2001 (Vic) s 85(3); National Health Privacy Working Group of the Australian Health Ministers’ Advisory Council, Draft National Health Privacy Code (2003), pt 4 cl 4(3).

[57] See, eg, Australian Bankers’ Association Inc, Submission PR 567, 11 February 2008; Government of South Australia, Submission PR 565, 29 January 2008; Australian Guardianship and Administration Committee, Submission PR 560, 17 January 2008; Australian Privacy Foundation, Submission PR 553, 2 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; Optus, Submission PR 532, 21 December 2007; National Legal Aid, Submission PR 521, 21 December 2007; Australian Mercantile Agents Association, Submission PR 508, 21 December 2007; Australian Investigators Association, Submission PR 507, 21 December 2007; Australian Collectors Association, Submission PR 505, 20 December 2007; Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; ACT Government Department of Disability, Housing and Community Services, Submission PR 495, 19 December 2007; Office of the Victorian Privacy Commissioner, Submission PR 493, 19 December 2007; Legal Aid Queensland, Submission PR 489, 19 December 2007; Insurance Council of Australia, Submission PR 485, 18 December 2007; Telstra Corporation Limited, Submission PR 459, 11 December 2007; Law Society of New South Wales, Submission PR 443, 10 December 2007; Avant Mutual Group Ltd, Submission PR 421, 7 December 2007; National Health and Medical Research Council, Submission PR 397, 7 December 2007.

[58] Office of the Public Advocate Queensland, Submission PR 195, 12 February 2007.

[59] Australian Privacy Foundation, Submission PR 553, 2 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007; Office of the Victorian Privacy Commissioner, Submission PR 493, 19 December 2007; Avant Mutual Group Ltd, Submission PR 421, 7 December 2007.

[60] Australian Direct Marketing Association, Submission PR 543, 21 December 2007.

[61] Australian Bankers’ Association Inc, Submission PR 567, 11 February 2008; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; Carers Australia, Submission PR 423, 7 December 2007.

[62] Carers Australia, Submission PR 423, 7 December 2007.

[63] Australian Bankers’ Association Inc, Submission PR 567, 11 February 2008.

[64] Carers Australia, Submission PR 423, 7 December 2007.

[65] New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007.

[66] Ibid.

[67] Office of the Privacy Commissioner, Submission PR 499, 20 December 2007.

[68] Public Interest Advocacy Centre, Submission PR 548, 26 December 2007.

[69] Medicare Australia, Submission PR 534, 21 December 2007; Privacy NSW, Submission PR 468, 14 December 2007.

[70] Privacy NSW, Submission PR 468, 14 December 2007.

[71] Health Records Act 2001 (Vic) s 85(3); Health Records and Information Privacy Act 2002 (NSW) s 7.

[72] See, eg, S Ellison and others, Access to Justice and Legal Needs: The Legal Needs of Older People in NSW (2004) Law and Justice Foundation of New South Wales; Attorney General’s Department of New South Wales, Are the Rights of People Whose Capacity is in Question Being Adequately Promoted and Protected? (2006). These issues are not only of concern in Australia: Canadian Centre for Elder Law Studies and British Columbia Law Institute, A Comparative Analysis of Adult Guardianship Laws in BC, New Zealand and Ontario, CCELS Report 4; BCLI Report 46 (2006).

[73] S Ellison and others, Access to Justice and Legal Needs: The Legal Needs of Older People in NSW (2004) Law and Justice Foundation of New South Wales, 328–329; Parliament of Australia—House of Representatives Legal and Constitutional Affairs Committee, Older People and the Law (2007), [3.77]–[3.88].

[74] Parliament of Australia—House of Representatives Legal and Constitutional Affairs Committee, Older People and the Law (2007), rec 19.

[75] See Rec 70–3 below.

[76] Parliament of Australia—House of Representatives Legal and Constitutional Affairs Committee, Older People and the Law (2007).

[77] Powers of Attorney Act 2003 (NSW); Instruments Act 1958 (Vic); Powers of Attorney Act 1998 (Qld); Property Law Act 1969 (WA); Powers of Attorney and Agency Act 1984 (SA); Powers of Attorney Act 2000 (Tas); Powers of Attorney Act 2006 (ACT); Powers of Attorney Act 1980 (NT).

[78] Powers of Attorney Act 2003 (NSW); Instruments Act 1958 (Vic); Powers of Attorney Act 1998 (Qld); Guardianship and Administration Act 1990 (WA); Consent to Medical Treatment and Palliative Care Act 1995 (SA); Powers of Attorney and Agency Act 1984 (SA); Powers of Attorney Act 2000 (Tas); Powers of Attorney Act 2006 (ACT); Powers of Attorney Act 1980 (NT). Western Australia and the Northern Territory have no provision for enduring powers of attorney for medical or lifestyle decisions.

[79] Guardianship Act 1987 (NSW); Guardianship and Administration Act 1986 (Vic); Guardianship and Administration Act 2000 (Qld); Guardianship and Administration Act 1990 (WA); Guardianship and Administration Act 1993 (SA); Guardianship and Administration Act 1995 (Tas); Guardianship and Management of Property Act 1991 (ACT); Adult Guardianship Act 1988 (NT).

[80] Guardianship Act 1987 (NSW); Guardianship and Administration Act 1986 (Vic); Guardianship and Administration Act 2000 (Qld); Guardianship and Administration Act 1990 (WA); Aged and Infirm Persons’ Property Act 1940 (SA); Guardianship and Administration Act 1993 (SA); Guardianship and Administration Act 1995 (Tas); Guardianship and Management of Property Act 1991 (ACT); Adult Guardianship Act 1988 (NT).

[81] For example, a ‘responsible person’ under the NSW, South Australian and Tasmanian guardianship legislation is only authorised to give consent to medical or dental treatment—no other decision making is authorised: Guardianship Act 1987 (NSW) pt 5; Guardianship and Administration Act 1993 (SA) pt 5; Guardianship and Administration Act 1995 (Tas) s 39. A statutory health attorney or a principal under an advance health directive under the Queensland legislation has authority to make any decision ‘about a health matter’ that could have been made by the adult if he or she had capacity: Powers of Attorney Act 1998 (Qld) ss 36(4), 63.

[82] Office of the Privacy Commissioner, Submission PR 499, 20 December 2007.

[83] Australian Law Reform Commission, Review of Privacy, IP 31 (2006).

[84] Australian Law Reform Commission, Review of Australian Privacy Law, DP 72 (2007) Proposal 61–2.

[85] National Health Privacy Working Group of the Australian Health Ministers’ Advisory Council, Draft National Health Privacy Code (2003) pt 4 cl 1.

[86] National Legal Aid, Submission PR 521, 21 December 2007; Australian Mercantile Agents Association, Submission PR 508, 21 December 2007; Australian Investigators Association, Submission PR 507, 21 December 2007; Australian Collectors Association, Submission PR 505, 20 December 2007; Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; ACT Government Department of Disability, Housing and Community Services, Submission PR 495, 19 December 2007; Legal Aid Queensland, Submission PR 489, 19 December 2007; BUPA Australia Health, Submission PR 455, 7 December 2007; New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007; National Health and Medical Research Council, Submission PR 397, 7 December 2007.

[87] See in particular detailed discussion of the wording of the definition in: Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; Office of the Public Advocate Queensland, Submission PR 435, 10 December 2007.

[88] Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007. See also Office of the Privacy Commissioner, Submission PR 499, 20 December 2007.

[89] GE Money Australia, Submission PR 537, 21 December 2007.

[90] See, eg, Avant Mutual Group Ltd, Submission PR 421, 7 December 2007.

[91] National Health and Medical Research Council, Submission PR 397, 7 December 2007.

[92] Parliament of Australia—House of Representatives Legal and Constitutional Affairs Committee, Older People and the Law (2007).

[93] Rec 70–3.

[94] Parliament of Australia—House of Representatives Legal and Constitutional Affairs Committee, Older People and the Law (2007), Ch 3.

[95] Australian Law Reform Commission, Review of Australian Privacy Law, DP 72 (2007), Proposal 61–3.

[96] Australian Bankers’ Association Inc, Submission PR 567, 11 February 2008; Government of South Australia, Submission PR 565, 29 January 2008; Australian Privacy Foundation, Submission PR 553, 2 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; Medicare Australia, Submission PR 534, 21 December 2007; Optus, Submission PR 532, 21 December 2007; Law Council of Australia, Submission PR 527, 21 December 2007; Suncorp-Metway Ltd, Submission PR 525, 21 December 2007; Office of the Privacy Commissioner, Submission PR 499, 20 December 2007; Office of the Victorian Privacy Commissioner, Submission PR 493, 19 December 2007; Legal Aid Queensland, Submission PR 489, 19 December 2007; Privacy NSW, Submission PR 468, 14 December 2007; Law Society of New South Wales, Submission PR 443, 10 December 2007; Office of the Public Advocate Queensland, Submission PR 435, 10 December 2007.

[97] Public Interest Advocacy Centre, Submission PR 548, 26 December 2007.

[98] Australian Government Department of Foreign Affairs and Trade, Submission PR 563, 24 January 2008; Australian Privacy Foundation, Submission PR 553, 2 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; National Legal Aid, Submission PR 521, 21 December 2007; Confidential, Submission PR 519, 21 December 2007; Human Rights and Equal Opportunity Commission, Submission PR 500, 20 December 2007; ACT Government Department of Disability, Housing and Community Services, Submission PR 495, 19 December 2007; Legal Aid Queensland, Submission PR 489, 19 December 2007; BUPA Australia Health, Submission PR 455, 7 December 2007; Office of the Public Advocate Queensland, Submission PR 435, 10 December 2007; Carers Australia, Submission PR 423, 7 December 2007; Avant Mutual Group Ltd, Submission PR 421, 7 December 2007; New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007; National E-health Transition Authority, Submission PR 145, 29 January 2007.

[99] Avant Mutual Group Ltd, Submission PR 421, 7 December 2007. See also BUPA Australia Health, Submission PR 455, 7 December 2007.

[100] Australian Government Department of Foreign Affairs and Trade, Submission PR 563, 24 January 2008.

[101] Carers Australia, Submission PR 423, 7 December 2007.

[102] Australian Guardianship and Administration Committee, Submission PR 560, 17 January 2008; Public Interest Advocacy Centre, Submission PR 548, 26 December 2007; Legal Aid Queensland, Submission PR 489, 19 December 2007; Office of the Public Advocate Queensland, Submission PR 435, 10 December 2007; Carers Australia, Submission PR 423, 7 December 2007; New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007.

[103] Carers Australia, Submission PR 423, 7 December 2007.

[104] Ibid; Avant Mutual Group Ltd, Submission PR 421, 7 December 2007; New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007; Office of the Health Services Commissioner (Victoria), Submission PR 153, 30 January 2007.

[105] Guardianship Act 1987 (NSW) s 33A. Circumstances in which a person is to be regarded as ‘having the care of another person’ are set out in s 3D. The meaning of ‘close friend or relative’ is given in s 3E.

[106] See, eg, Ibid, where the concept of ‘person responsible’ only applies to pt 5 Medical and Dental Treatment.

[107] Carers Australia, Submission PR 423, 7 December 2007.

[108] Ibid.

[109] New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007.

[110] ACT Government Department of Disability, Housing and Community Services, Submission PR 495, 19 December 2007.

[111] Office of the Public Advocate Queensland, Submission PR 195, 12 February 2007.

[112] Australian Bankers’ Association Inc, Submission PR 259, 19 March 2007.

[113] NSW Disability Discrimination Legal Centre (Inc), Submission PR 105, 16 January 2007.

[114] Office of the Public Advocate Queensland, Submission PR 195, 12 February 2007, citing R Munro, ‘Elder Abuse and Legislative Remedies: Practical Remedies’ (2002) 81 Reform 42.

[115] Carers Australia, Submission PR 423, 7 December 2007 citing C Tilse, J Wilson and D Setterlund, ‘Older People’s Assets: A Contested Site’ (2005) 24 Australasian Journal on Ageing Supplement 51; New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007.

[116] New South Wales Guardianship Tribunal, Submission PR 403, 7 December 2007.

[117] Confidential, Consultation PC 175, Melbourne, 17 October 2007.

[118] Confidential, Submission PR 519, 21 December 2007.

[119] C Tilse, J Wilson and D Setterlund, ‘Older People’s Assets: A Contested Site’ (2005) 24 Australasian Journal on Ageing Supplement 51.

[120] Carers Australia, Submission PR 423, 7 December 2007.

[121] Queensland Law Reform Commission, Assisted and Substituted Decisions, Report 49 (1996).

[122] Guardianship and Administration Act 2000 (Qld) s 9(2)(a).

[123] Ibid s 154.

[124] Guardianship Act 1987 (NSW) s 33A, with ‘person responsible’ defined in s 3D; Guardianship and Administration Act 1986 (Vic) pt 4A, with ‘person responsible’ defined in s 37; Powers of Attorney Act 1998 (Qld) s 63 provides for a statutory health attorney, and the role of the statutory health attorney is also recognised in the Guardianship and Administration Act 2000 (Qld); Guardianship and Administration Act 1993 (SA) pt 5; Guardianship and Administration Act 1995 (Tas) s 39, with ‘person responsible’ defined in s 4. The issue is under consideration in the ACT: ACT Government Department of Justice and Community Safety, Consenting to Treatment: Discussion Paper (2007).

[125] This provision was based on the recommendations contained in Law Commission of England and Wales, Mental Incapacity, Report 231 (1995). The Law Reform Commission of Ireland has recently recommended adopting the same approach: Law Reform Commission of Ireland, Vulnerable Adults and the Law, LRC 83 (2006).