Recommendation 4–12 The Australian Government should further consider Recommendation 6–2 of ALRC Report No 124 Equality, Capacity and Disability in Commonwealth Laws, that aged care laws and legal frameworks should be amended consistently with the National Decision-Making Principles set out in that Report.
4.204 Abuse of formal and informal decision-making powers was identified in submissions as a form of elder abuse in aged care. Stakeholders raised concerns about:
failures to respect or acknowledge the decision-making ability of an older person;
abuse by informal and appointed decision makers, including misuse of powers of attorney, and abusive or prohibitive lifestyle decisions;
a lack of understanding of the powers and duties of appointed decision makers, by both the decision maker and aged care workers; and
in relation to consumer directed care, concern about family members inappropriately influencing the decisions made by older people about the design of a care package.
4.205 In the Equality, Capacity and Disability Report, the ALRC recommended that aged care laws and legal frameworks should be amended consistently with the National Decision-Making Principles. These Principles emphasise the equal rights of all adults to make decisions that affect their lives, and prescribe that the will, preferences and rights of a person who may require decision-making support must direct these decisions. The ALRC also developed a Commonwealth Decision-Making Model that, among other things, makes provision for the appointment of a ‘supporter’ or a ‘representative’ for a person who requires decision-making support, and recommended that aged care legislation be amended consistently with this model.
4.206 The ALRC considers that the implementation of these recommendations will assist in ensuring that decisions in aged care are made in accordance with an older person’s will, preferences and rights.
4.207 The Aged Care Act and associated Principles contain a number of provisions relating to decision making. For example, the Charters of Care Recipients’ Rights and Responsibilities include rights in relation to decision making in residential and home care. There are also provisions in aged care legislation that allow for supported or representative decision making. However, the use of terminology across the legislation, and the powers and duties attached to persons who may act in these roles, are not consistent. As the Equality, Capacity and Disability Report noted, the
current legal framework provides for some elements of supported and representative decision-making in aged care. Section 96-5 of the Aged Care Act provides for a person, other than an approved provider, to represent an aged care recipient who, because of any ‘physical incapacity or mental impairment’ is unable to enter into agreements relating to residential care, home care, extra services, accommodation bonds and accommodation charges. Section 96-6 states that in making an application or giving information under the Act, a ‘person authorised to act on the care recipient’s behalf’ can do so.
4.208 The Quality of Care Principles define ‘representative’ in a way that is ‘similar to both supporters and representatives in the Commonwealth decision-making model’.
4.209 The Law Society of South Australia was concerned about the potential for abuse that arises from the ‘vague and uncertain’ definitions relating to decision makers in the Aged Care Act and associated Principles:
An example of potential abuse (often seen in practice) … is the entitlement of a care recipient within the Charter of Care Recipients’ Rights in relation to home care to have his or her representative participate in decisions, etc. There is no definition of ‘representative’ for the purposes of the Charter, or more generally in the User Rights Principles. If one were to apply the broad and uncertain definition appearing in the Records Principles, any person who had some dealings (whether authorised or otherwise and of whatever level of significance or duration) would be entitled to put themselves forward as a representative of the care recipient and therefore entitled to participate in the choice of services.
4.210 Implementation of the ALRC’s recommendation to amend aged care legislation in line with the Commonwealth Decision-Making Model would provide a consistent approach to supported decision making, and offer an important safeguard against abuse for older people receiving aged care. It would provide clear statutory guidance for decision making, with the starting point that the older person’s will, preferences and rights should guide decisions made regarding their care.
4.211 This is particularly important when considering major decisions, such as the decision to enter residential aged care. The Law Council of Australia argued that there should be a ‘more robust approvals process around entry to aged care, such as determining the wishes and preferences of older person and considering these wishes and preferences, irrespective of the person’s capacity’. Justice Connect Seniors Law was similarly concerned about safeguards relating to a person’s entry to aged care. It argued that the decision to enter residential aged care is a key decision, and that ‘regulation is required to clarify the person responsible for making the decision and safeguards and oversight of those decisions’.
4.212 Implementation of the ALRC’s recommendation would also require:
consideration of the interaction with state and territory appointed decision makers;
revision of guidelines and operational manuals across the aged care system, including for aged care assessment teams, approved providers, and advocacy services to ensure consistent guidance about decision making; and
training and education for aged care workers in principles for decision making for care recipients, including powers and duties of appointed decision makers, and avenues for reporting concerns about abuse of decision-making powers.
4.213 The Office of the Public Advocate (Vic) supported the recommendations relating to aged care made in the Equality, Capacity and Disability Report, arguing that these will help ‘ensure older people with cognitive impairment are adequately supported to make and enact decisions according to their will and preferences, thereby protecting them from people making decisions for them that contravene their rights’. The GLBTI Rights in Ageing Institute argued that an ‘individual’s rights and autonomy would be better protected by legal frameworks which emphasised the benefits of supported decision-making processes’. The ACN noted that a person’s ability to make decisions may change, and that following a period of dependence, ‘processes must facilitate and protect an older person’s right to resume control in directing their care planning and resume independence in decision-making’.
4.214 A revision of the decision-making provisions in aged care laws and legal frameworks is particularly timely, given the move towards consumer directed care. As a number of submissions to this Inquiry noted, many recipients of aged care may need support to make decisions about care planning. For example, Speech Pathology Australia noted that communication difficulties ‘are one of the greatest barriers to the execution of choice and active participation in decision making and care planning, including development of a support or care plan under a consumer directed care model’. Stakeholders also highlighted the importance of funded advocacy programs in providing decision-making support.
4.215 Reforms recommended elsewhere in this Report will also assist in providing safeguards against abuse of a person’s decision-making rights. These include recommendations for reform of laws relating to enduring powers of attorney and guardianship (Chapter 5); guardianship and financial administration (Chapter 10) as well as the recommendations to provide oversight of the use of restrictive practices in aged care (Recommendations 4–10 and 4–11).
Appointed decision makers—a matter of choice
Recommendation 4–13 Aged care legislation should provide that agreements entered into between an approved provider and a care recipient cannot require that the care recipient has appointed a decision maker for lifestyle, personal or financial matters.
4.216 A number of submissions to this Inquiry observed that it was the practice of some approved residential aged care providers to require, as part of an agreement with the provider, that a person has appointed a financial and/or a lifestyle decision maker as a condition of entry into residential aged care. ARNLA, who supported the recommendation against such a requirement, referred to this as an ‘ingrained’ practice of providers.
4.217 The Office of the Public Advocate (Qld) observed that the
rationale for this policy is likely to be a financial and legal safeguard for the facility by ensuring that all people seeking placement have a mechanism in place to ensure continuity of decision-making in respect of the person’s placement should they cease to have capacity.
4.218 Other submissions outlined the complexities that aged care providers can face in relation to decision making. The ACN noted that ‘aged care providers can be significantly challenged by situations when an older person does not have advance care directives about the appointment of guardians and there is no suitable substitute decision maker to work with’. Resthaven stated that providers ‘face a real challenge for the older person who has not made any Advance Directives about the appointment of guardians prior to their loss of competency and where it is not evident there is a suitable substitute decision maker to work with’.
4.219 While recognising these challenges, the ALRC considers that appointing a representative decision maker should not be required as a condition of receipt of aged care. Advance planning for decision-making support in aged care should, however, be encouraged. Speech Pathology Australia argued that there is a
need for ongoing training and education for all aged care workers and health professionals regarding the importance of advance care planning and having those difficult conversations with clients as early as possible and across all levels of contact with the health and aged care systems. This must be seen as core business and addressed as a central element of aged care.
4.220 COTA was similarly concerned that any choice not to appoint a decision maker be an informed one, and suggested that providers be required to ‘inform care recipients of what the consequences may be if there is no one appointed and they become incapacitated in regard to decision making’.
4.221 ACSA opposed such a recommendation, arguing that it would be inconsistent with a market-based approach, ‘as it seeks to override contractual arrangements between an aged care provider and a care recipient’. However, the ALRC considers that requiring that a person has appointed a decision maker before entry into aged care is an inappropriate encroachment on the decision-making rights of older people. Further, it may have harmful effects on the older person. Seniors Legal and Support Service Hervey Bay argued that such a requirement meant that
too often older people appoint ‘risky’ attorneys or spend unnecessary time in hospital waiting for the tribunal to appoint a substitute decision maker because aged care facilities will not offer accommodation to prospective residents who do not have a substituted decision maker appointed.
4.222 As Seniors Rights Service argued:
a resident should have the right to choose whether or not they will appoint a substitute decision maker. The provider may wish to take steps to ensure that their fees are paid but this should not encroach on the fundamental rights of the resident to make their own decisions.
4.223 In keeping with an emphasis on respecting a person’s decision-making ability, the ALRC recommends that aged care legislation should provide that agreements entered into between an approved provider and a care recipient cannot require that the care recipient has appointed a decision maker for lifestyle, personal or financial matters.
Other issues relating to aged care agreements
4.224 Seniors Rights Service raised broader concerns with aged care agreements, arguing that some provisions included in agreements were ‘oppressive’ and that further protections for older people against unfair provisions were required. It advocated for a mandated uniform aged care agreement, or failing this, a requirement that the Department of Health produce an information booklet, together with a schedule of rates and costs, relating to aged care agreements on an annual basis, together with a prescription that any aged care agreement which seeks to avoid or restrict the operation of the information contained in the booklet be void and of no effect.
A number of submissions raised concerns about decision making in relation to admission to residential aged care: Justice Connect, Submission 182; Office of the Public Advocate (Qld), Submission 149; Townsville Community Legal Service Inc, Submission 141; Office of the Public Advocate (Vic), Submission 95. See also the example of ‘June’, in a case study provided in ADA Australia, Submission 150.
For example, the NSW Nurses and Midwives’ Association submitted that one third of members responding to a survey about elder abuse had either witnessed, or were unsure about witnessing financial abuse of a person by relatives who held Power of Attorney: NSW Nurses and Midwives’ Association, Submission 29. See also Justice Connect, Submission 182; ADA Australia, Submission 150; Townsville Community Legal Service Inc, Submission 141; GLBTI Rights in Ageing Institute, Submission 132; Leading Age Services Australia, Submission 104; Office of the Public Advocate (Vic), Submission 95; Alice’s Garage, Submission 36.
ADA Australia, Submission 150; Advocare Inc (WA), Submission 86.
Office of the Public Advocate (SA), Submission 170; UnitingCare Australia, Submission 162; National Seniors Australia, Submission 154; Australian College of Nursing, Submission 147; Aged and Community Services Australia, Submission 102; Advocare Inc (WA), Submission 86. There are existing safeguards against inappropriate care packages being developed through a CDC model. These include providers’ responsibilities in relation to providing ongoing review of a person’s home care package: Aged Care Act 1997 (Cth) s 56-2(k); User Rights Principles 2014 (Cth) sch 2 cl 3(d); Department of Health (Cth), above n 51, 36. There are also limits on what home care package funds can be spent on: Quality of Care Principles 2014 (Cth) sch 3 pt 2.
Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws, Report No 124 (2014) rec 6–2.
Ibid rec 3–1. The National Decision-Making Principles, and the ALRC’s approach to supported decision making, are discussed further in ch 2.
Ibid rec 6–2. For a discussion of how the ALRC’s recommended terminology of ‘representative’ maps on to the existing use of ‘representative’ in the Aged Care Act, see Ibid 168–73.
User Rights Principles 2014 (Cth) sch 1 cl 1(n), sch 2 cls 2(c)–(d), 5(d).
Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws, Report No 124 (2014) 168.
Ibid 169; Quality of Care Principles 2014 (Cth) s 5.
Law Society of South Australia, Submission 381. The Records Principles 2014 (Cth) defines ‘representative’ as a person nominated by the care recipient as a person to be told about matters affecting the care recipient; or a person who nominates themself to be told about matters affecting a care recipient; and who the provider is satisfied has a connection with the care recipient, and is concerned for the safety, health and wellbeing of the care recipient: s 5(1). A person who has a connection with the care recipient is non-exhaustively defined to include a person who ‘represents the care recipient in dealings with the approved provider’: s 5(2)(d).
See also Deirdre Fetherstonhaugh, Laura Tarzia and Rhonda Nay, ‘Being Central to Decision Making Means I Am Still Here!: The Essence of Decision Making for People with Dementia’ (2013) 27(2) Journal of Aging Studies 143.
Law Council of Australia, Submission 351.
Justice Connect Seniors Law, Submission 362.
The ALRC considered this in the context of decision making in the NDIS in Australian Law Reform Commission, Equality, Capacity and Disability in Commonwealth Laws, Report No 124 (2014) ch 5. In the context of aged care, the Law Society of SA observed that the ‘extent to which rights under the Act are only exercisable by a care recipient’s formal appointee has been, and continues to be an area of considerable uncertainty’: Law Society of South Australia, Submission 381.
This was supported by Justice Connect, Submission 182; ADA Australia, Submission 150; NSW Nurses and Midwives’ Association, Submission 29. See also Laura Tarzia et al, ‘“We Have to Work Within the System!”: Staff Perceptions of Organizational Barriers to Decision Making for Older Adults With Dementia in Australian Aged Care Facilities’ (2015) 8(6) Research in Gerontological Nursing 286. Measures might include, eg, guidance about when ACAT teams should speak to the older person alone.
Office of the Public Advocate (Vic), Submission 95.
GLBTI Rights in Ageing Institute, Submission 132. See also Speech Pathology Australia, Submission 168; Australian College of Nursing, Submission 147; TASC National, Submission 91; Law Council of Australia, Submission 61.
Australian College of Nursing, Submission 147.
See, eg, Speech Pathology Australia, Submission 168; Australian Association of Social Workers, Submission 153; Office of the Public Advocate (Vic), Submission 95.
Speech Pathology Australia, Submission 168.
See, eg, Australian Nursing & Midwifery Federation, Submission 163; Advocare Inc (WA), Submission 86.
See, eg, Seniors Rights Service, Submission 169; Office of the Public Advocate (Qld), Submission 149; Townsville Community Legal Service Inc, Submission 141. Agreements entered into between an approved provider and a residential care recipient include accommodation agreements and resident agreements. The Act specifies a number of requirements for those agreements: Aged Care Act 1997 (Cth) ss 52F-3, 59-1, 61-1.
Australian Research Network on Law and Ageing, Submission 262. ADA Australia noted that it had been involved in a number of cases of this type: ADA Australia, Submission 283.
Office of the Public Advocate (Qld), Submission 149.
Australian College of Nursing, Submission 147. See also Leading Age Services Australia, Submission 377.
Resthaven, Submission 114.
Many submissions supported the Discussion Paper proposal: Leading Age Services Australia, Submission 377; Victorian Multicultural Commission, Submission 364; National Older Persons Legal Services Network, Submission 363; Justice Connect Seniors Law, Submission 362; Office of the Public Advocate (Qld), Submission 361; Disabled People’s Organisations Australia, Submission 360; Eastern Community Legal Centre, Submission 357; M Berry, Submission 355; COTA, Submission 354; Law Council of Australia, Submission 351; CPA Australia, Submission 338; Carroll & O’Dea, Submission 335; Institute of Legal Executives (Vic), Submission 320; Darwin Community Legal Service Aged and Disability Advocacy Service, Submission 316; Seniors Legal and Support Service Hervey Bay, Submission 310; Speech Pathology Australia, Submission 309; Public Guardian (NSW), Submission 302; Seniors Rights Service, Submission 296; ADA Australia, Submission 283; Australian Research Network on Law and Ageing, Submission 262; Office of the Public Advocate (Vic), Submission 246; Lutheran Church of Australia, Submission 244; Brotherhood of St Laurence, Submission 232; Advocare, Submission 213.
Information and education about the utility for older people of putting in place arrangements for a person to make financial and/or lifestyle decisions on their behalf would form part of the proposed National Plan to reduce elder abuse (see rec 3–1). National Seniors Australia supported an ‘ongoing public campaign’ in relation to this: National Seniors Australia, Submission 154.
Speech Pathology Australia, Submission 309.
COTA, Submission 354. See also W Bonython and B Arnold, Submission 241.
Aged and Community Services Association, Submission 217.
Seniors Legal and Support Service Hervey Bay, Submission 310.
Seniors Rights Service, Submission 169. See also Office of the Public Advocate (Qld), Submission 149.
See further Seniors Rights Service, Submission 296; Seniors Rights Service, Submission 169.