6.38 This section outlines how the National Decision-Making Principles and the Commonwealth decision-making model may apply to aged care to ensure equal recognition before the law and legal capacity for older persons with disability.
6.39 Older people receiving aged care services who have intellectual, cognitive, physical or mental disabilities may find it difficult, without support, to exercise their rights to health services and an adequate standard of living and social protection. Caxton Legal Centre referred to ‘Mrs L’, an 83-year old woman who experienced multiple difficulties in asserting her rights at her nursing home and the Queensland Civil and Administrative Tribunal:
Mrs L … was a physically frail woman of European origin, who had a heavy accent. She was in a nursing home, but wished to be returned to the care of her husband. There was no medical evidence of dementia, but the nursing home had assumed she had dementia because she was difficult to understand following a surgical complication that affected her speech. Mrs L was also extremely depressed at the separation from her husband.
At the guardianship hearing, questions were asked about her ability to cook and care for herself. Mrs L was a proud woman and acknowledged later that she felt too embarrassed to admit in front of strangers in an intimidating setting that she was too frail to cook. However, this was taken by the tribunal to mean she ‘lacked insight’ and therefore must have impaired capacity. There were also misunderstandings by a tribunal member about the type of food Mrs L was describing, as a result of her heavy accent. An interpreter had been requested for Mrs L but was not provided. The Adult Guardian and Public Trustee were appointed.
6.40 Aged care is an increasingly important area of federal responsibility in the context of Australia’s ageing population. The Australian Government regulates residential aged care and home care, under the Aged Care Act and under the Home and Community Care program.
6.41 Under the Australian Aged Care Quality Agency Act 2013 (Cth), the Australian Aged Care Quality Agency is responsible for the accreditation, monitoring and quality assurance of Commonwealth subsidised residential aged care providers, and for monitoring the quality of home and community aged care services.
6.42 The Australian Government responded to the Productivity Commission’s recommendations in the ‘Caring for Older Australians’ report with the ‘Living Longer Living Better’ reforms to aged care.
6.43 Both Houses of Parliament have examined issues concerning dementia in recent years. The House of Representatives Standing Committee on Health and Ageing recommended uniform definitions, laws and guidelines relating to capacity, in state and territory legislation. The Senate Committee on Community Affairs recommended the creation of a new Medicare item that encourages health practitioners to undertake longer consultations with a patient and at least one family member or carer where the patient has presented with indications of dementia. The Committee also recommended the review of accreditation standards for residential aged care facilities in relation to managing symptoms of dementia.
6.44 The Commonwealth decision-making model responds to calls for clear, national guidance for decision-making in aged care that is compliant with the CRPD. The model would provide for the recognition of supporters who assist aged care consumers in their decision-making and representatives to make decisions directed by the will, preferences and rights of aged care consumers.
Individual decision-making in aged care
6.45 At present, decisions in aged care are made in three ways: by the aged care recipients themselves; informally by their families or carers; or by formally appointed substitute decision-makers such as guardians.
6.46 Informal decision-making for an aged care recipient seems routine and customary in aged care. The Victorian Law Reform Commission report on guardianship noted that many people with impaired decision-making capacity live in facilities like nursing homes with only the informal consent of a family member or carer. On the other hand, government agencies and service providers seem to prefer the formality of legal arrangements for aged care decisions.
6.47 The Australian Guardianship and Administration Council (AGAC) submitted that ‘informal decision making’ or ‘de facto arrangements’ were initially approved as ‘less restrictive alternatives’ when compared to formal guardianship appointments. However, AGAC also expressed concern that informal decision-making lacks safeguards against abuse as required by art 12(4) of the CRPD.
6.48 AGAC’s experience has been that where Commonwealth agencies have assumed that most persons with disability have formally appointed guardians and designed forms on this basis, state and territory tribunals have been periodically ‘inundated by applications for appointment of guardians or administrators’ to give effect to decisions relating to aged care, for example, for asset assessment required for application for residential aged care.
6.49 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.
6.50 There is a differentiation between ‘representation’ for binding contracts and ‘authorisation’ for obtaining and receiving information for the aged care recipient. However, there is inconsistency in the use of the term ‘representative’ throughout the Commonwealth laws and legal frameworks for aged care recipients. This is evident in the disparate references to a ‘legal representative’ to imply a guardianship arrangement; ‘representative’ to refer to an advocate; and an undefined ‘appropriate person’.
6.51 The new Quality of Care Principles 2014 (Cth) set out the responsibilities of approved providers in providing residential and home care services. These principles also define the ‘representative’ of a care recipient more clearly than in the Act.
6.52 A representative under the Quality of Care Principles means either: a person nominated by the care recipient as a person to be told about matters affecting the care recipient; or a person who nominates themselves and who the relevant approved provider is satisfied has a connection with the care recipient and is concerned for the ‘safety, health and well‑being of the care recipient’. Section 5(2) of the Quality of Care Principles states that a person who has a connection with a care recipient includes:
- a partner, close relation or other relative of the care recipient;
- a person who holds an enduring power of attorney given by the care recipient;
- a person who has been appointed by a state or territory guardianship board (however described) to deal with the care recipient’s affairs; or
- a person who represents the care recipient in dealings with the approved provider.
6.53 This definition of representative is similar to both supporters and representatives in the Commonwealth decision-making model. The intention behind the new definition in the Quality of Care Principles is to recognise the role of ‘informal substitute decision-makers’ as representatives of care recipients in their dealings with approved providers without conferring on them powers of a formal, state or territory appointed decision-maker such as a guardian or financial manager.
6.54 This move to acknowledge the role of informal supporters of aged care consumers is consistent with the ALRC’s overall approach. The requirement for a representative to have a connection and concern for the safety, health and wellbeing of an aged care consumer is also broadly consistent with the National Decision-Making Principles. However, in support of further reform in aged care, stakeholders emphasised the need to preserve aged care consumers’ right to their autonomy, and the importance of supporting them in decision-making.
6.55 Caxton Legal Centre noted the ‘omission of the CRPD’ in the Living Longer Living Better reforms with respect to art 12. The Centre for Rural and Regional Law and Justice, and the National Rural Law and Justice Alliance stressed the value of supported decision-making and co-decision-making arrangements, which are particularly relevant in the regional and rural context.
6.56 Others reflected on addressing the ‘balance between duty of care and the dignity of risk’ in aged care decision-making. The OPA (SA and Vic) submitted that the operation of the Commonwealth model needs to do this ‘while protecting older people from exposure to abuse’. The Illawarra Forum recommended change to the legislation so that ‘risk management strategies’ do not result in older people with dementia being ‘locked up’ in aged care.
6.57 One issue which encapsulates these concerns is the use of restrictive practices on aged care recipients. The Mental Health Coordinating Council drew attention to the chemical restraint of some older people and people with mental illness who are deemed to be ‘challenging’ in care facilities. The Council argued:
Supported decision-making is extremely important for this group of particularly vulnerable people, who the system characteristically ‘medicates’ and ‘manages’. It is critical that the mental health and age care services work closely together so that a vulnerable and isolated person does not fall between service gaps and that older people are appropriately cared for in mental health and age care facilities using principles of recovery and enablement.
6.58 The OPA (SA) suggested amendment of the User Rights Principles to minimise and eliminate the use of restrictive practices in aged care. The Office recommended that there should be a clear definition of each restrictive practice, a requirement that non-coercive measures be considered and clear authority before any restrictive practice is used.
The Commonwealth model and aged care
Recommendation 6–2 The Aged Care Act 1997 (Cth) should be amended to include provisions dealing with supporters and representatives consistent with the Commonwealth decision-making model.
6.59 To ensure better compliance with art 12 of the CRPD, the ALRC recommends that the Aged Care Act be amended in the light of the National Decision-Making Principles and the Commonwealth decision-making model.
6.60 Division 2 of the Aged Care Act lists the objects of the legislation in regulating and funding aged care. They include: encouraging aged care services that ‘facilitate the independence of, and choice available to’ recipients and helping recipients ‘to enjoy the same rights as all other people in Australia’. The extensive set of objects does not, however, directly apply them to decision-making arrangements.
6.61 The ALRC recommends that s 2–1 of the Aged Care Act be amended to incorporate principles relating to supported decision-making. The application of the Commonwealth decision-making model should help deliver the rights and responsibilities of aged care recipients contained in the User Rights Principles 2014 (Cth).
Supporters and representatives
6.62 The User Rights Principles mention representatives in the context of the right of a home care recipient to participate in their care decisions, if they do not have capacity to make those decisions themselves.
6.63 The User Rights Principles also recognise some roles analogous to those of a supporter under the Commonwealth model. The User Rights Principles provide that a person whom a care recipient has asked to act for them and ‘advocates and community visitors’ who are acting for the care recipients, have the right to access aged care services to check the approved providers have met their responsibilities. For example, approved providers must assist the care recipient to understand information about their rights and responsibilities. Under the existing framework, a person acting for a care recipient can check whether or not this has occurred. However, the person must either be a paid advocate or a community visitor.
6.64 The Commonwealth decision-making model could inform further reform of aged care legislation towards a rights-based and consumer-focused approach that acknowledges the role played by family, friends and carers. The model provides a structured approach for the involvement and regulation of representatives in decisions by aged care consumers. Supporters and representatives would be guided in their functions and be certain of their responsibilities.
6.65 Under this Commonwealth model, all aged care consumers have the right to make their own decisions. Supported decision-making in the aged care context means that people who require decision-making support can make as many of their own decisions as possible, with the assistance of a ‘supporter’, whether it is about where they live or what personal or health care services they receive. For representative decision-making in aged care, the ‘will, preferences and rights’ standard would replace the existing ‘best interests’ test.
6.66 The Commonwealth decision-making model would apply from the first trigger for decision-making by an aged care consumer, such as an assessment of care needs by the Aged Care Assessment Team. The decision to undergo assessment of care needs is often made under pressure when a crisis has arisen for the potential aged care consumer. This is why there are likely to be benefits in terms of efficiency and effectiveness for both consumers and approved providers, where an aged care consumer who needs support has a supporter with them or if they do not have a supporter available to them, a representative who will make decisions for them according to their will, preferences and rights.
6.67 The next significant decision for the aged care consumer may be whether to enter a resident agreement or home care package agreement. These agreements are legally binding documents that outline the services to be provided, fees charged, and the rights and responsibilities of both parties. Under the Commonwealth decision-making model, depending on the aged care consumer’s ability to make decisions and the availability of support, these decisions may be made by themselves, with the assistance of a supporter or by their representative.
6.68 There are myriad decisions made in aged care, on a daily, if not an hourly basis, which cannot practically be governed by a formalised supporter and representative model. The supporter and representative model might apply only to certain types of decisions, be trialled by new approved providers of home care services or otherwise tailored to suit the needs of the aged care consumers and approved providers.
6.69 The accreditation and quality monitoring system is an important safeguard of rights in the aged care sector. A suite of accreditation standards and guidelines made under the Aged Care Act regulates service providers. There is recognition of representatives of aged care consumers in the assessor’s guide to accrediting residential aged care services.
6.70 If the Commonwealth decision-making model were to be adopted, these standards and guidelines would need to be revised to recognise the roles of supporters and representatives. For instance, the Resident Care Manual states that a representative may be a guardian or a person nominated by the care recipient as his or her representative. The current requirement for a person to act as a representative is that the approved provider is satisfied that the nominated person has a connection with the resident, and is concerned for the ‘safety, health and well-being’ of the resident. Under the Commonwealth decision-making model, this would change to the standard of the ‘will, preferences and rights’ and the representative would have a duty to act in a way that promotes the ‘personal, social, financial and cultural wellbeing’ of the person.
6.71 The Home Care Packages Program Guidelines provide that shared decision-making between the consumer, an appointed representative and the home care provider should take place where the consumer has ‘cognitive impairment’. The Commonwealth decision-making model would give consistent guidance, so that an aged care consumer would be presumed to have the ability to make decisions and entitled to support in making those decisions. If a representative is appointed, the consumer would be entitled to have the representative make decisions that accord with the will, preferences and rights of the consumer.
Safeguards against elder abuse
6.72 Stakeholders raised significant concern over elder abuse and the need for safeguards in protecting the rights of aged care consumers. Elder abuse is defined by the World Health Organization as ‘a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person’. It can be physical, psychological, emotional, sexual or financial abuse. It can also be the result of intentional or unintentional neglect.
6.73 Advocacy and safeguarding of rights through having supporter and representative duties, as well as the guardianship systems around Australia are critical to preventing elder abuse. Under an effective, nationally coordinated model, the aged care consumer will receive the kind of assistance they need from supporters whose role and duties are specified. The aged care consumers will know that they are ultimately responsible for the decision made with the assistance of a supporter.
6.74 Where a representative makes a decision for the aged care consumer, the decision will be based on the will and preferences of the person requiring support and safeguards should apply, consistent with the Safeguards Guidelines. This would ensure that decisions and interventions are:
- least restrictive of the person’s human rights;
- subject to appeal; and
- subject to regular, independent and impartial monitoring and review.
6.75 The representative will have duties under the model and, when they are also the aged care consumer’s guardian, they will be bound by duties under state and territory legislation.
6.76 It is important for the Commonwealth decision-making model to augment existing state and territory systems with a clear, structured approach to decision-making that will mirror the rights and responsibilities of consumers and approved providers of aged care.
Guidance and training
6.77 Guidance and training for all parties involved in decision-making under the Commonwealth legislative framework for aged care is critical to the effective operation of this model. The OPA (SA and Vic) submitted:
Significant reform and concurrent sector and community education will be required to ensure that the operation of the Commonwealth decision-making model will balance duty of care and dignity of risk, while protecting older people from exposure to abuse.
6.78 The Department of Social Services (DSS) should develop and deliver targeted guidance and training for:
- aged care consumers who require decision-making support;
- supporters and representative; and
- DSS and Australian Aged Care Quality Agency employees and others involved decision-making or engagement with aged care consumers.
6.79 The focus of guidance and training could include topics such as: the introduction of the supporter and representative model under the law on aged care and differences between current practice and the new model; interaction with state and territory decision-making systems; and supported decision-making in the context of aged care.
As required under UN Convention on the Rights of Persons with Disabilities, Opened for Signature 30 March 2007, 999 UNTS 3 (entered into Force 3 May 2008) arts 25(b), 28.
Caxton Legal Centre, Submission 67.
From 1 January 2014, the Australian Aged Care Quality Agency replaced the Aged Care Standards and Accreditation Agency to take on the accreditation of residential aged care homes. Accreditation is conducted in accordance with the Quality of Care Principles 2014 (Cth), Quality Agency Reporting Principles 2013 (Cth) and other legislative instruments issued pursuant to the Aged Care Act 1997 (Cth).
On 1 July 2012, the Australian Government assumed full funding, policy and operational responsibility for the Home and Community Care (HACC) services for older people (over the age of 65 or 50 for Aboriginal and Torres Strait Islander people) in all states and territories except Victoria and Western Australia. Victoria agreed to transition responsibility for HACC for older people to the Commonwealth from 1 July 2015 and WA agreed to do the same from 2016–17. State and territory governments will continue to fund and administer HACC services for people under the age of 65 or under 50 for Aboriginal and Torres Strait Islander people.
‘Caring for Older Australians’ (Inquiry Report No 53, Productivity Commission, 2011). The Productivity Commission was requested to develop detailed options for redesigning the aged care system to meet the challenges facing it in coming decades, including the increasing incidence of dementia, severe arthritis and serious visual and hearing impairments, and the need for psycho-geriatric care.
See Aged Care (Living Longer Living Better) Act 2013 (Cth) and associated legislation. Changes such as income testing for home care packages, new accommodation payment arrangements for residential aged care, and the removal of the distinction between high and low levels of care in residential care commenced on 1 July 2014: Department of Social Services, Reform Overview <www.dss.gov.au>.
House of Representatives Standing Committee on Health and Ageing, Thinking Ahead: Report on the Inquiry into Dementia-Early Diagnosis and Intervention, 2013 recs 4–5.
Senate Committee on Community Affairs, Parliament of Australia, Care and Management of Younger and Older Australians Living with Dementia and Behavioural and Psychiatric Symptoms of Dementia (2014) rec 1.
Ibid recs 8–10, 13–15.
John Chesterman, ‘The Future of Adult Guardianship in Federal Australia’ (2013) 66 Australian Social Work 26; ‘Caring for Older Australians’, above n 31, rec 15.10; Law Council of Australia, Submission 83; Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20; Office of the Public Advocate (Qld), Submission 05.
Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) ch 15, 318.
AGAC, Submission 51.
Aged Care Act 1997 (Cth) s 52F–2.
Ibid s 81.1(1)(c)(ii).
Ibid s 44.8A.
Quality of Care Principles 2014 (Cth) s 5(1).
Quality of Care Principles 2014 (Cth) notes nothing in this section intends to affect the powers of a substitute decision-maker appointed for a person under a state or territory law.
Explanatory Statement, Quality of Care Principles 2014 (Cth) s 5.
Caxton Legal Centre, Submission 67.
Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20. The Centre also drew attention to the difficulties in accessing in-home support and respite services, which can greatly exacerbate the ‘disabling effects of ageing’ and, thereby, create greater difficulties for the person in the exercise of legal capacity.
Offices of the Public Advocate (SA and Vic), Submission 95.
The Illawarra Forum, Submission 19.
Mental Health Coordinating Council, Submission 07.
User Rights Principles 2014 (Cth) replaced User Rights Principles 1997 (Cth) on 1 July 2014. User Rights Principles are among principles made pursuant to Aged Care Act 1997 (Cth) s 96–1.
Office of the Public Advocate (SA), Submission 17. See also Office of the Public Advocate (Vic), Submission 06.
Restrictive practices are discussed in Ch 8.
Aged Care Act 1997 (Cth) s 2–1(1)(g)(ii).
Ibid s 2–1(1)(h).
User Rights Principles 2014 (Cth) schs 1–2. These provisions contain the charters of care recipients’ rights and responsibilities for residential care and home care.
Ibid sch 2(1)(2)(d).
Ibid ss 8, 18.
Ibid ss 11(3), 20(3).
Ibid ss 8(3), 18.
See Ch 3.
The Aged Care Assessment Service in Victoria.
The four accreditation standards for residential aged care facilities are set out in the Quality of Care Principles 2014 (Cth). Approved providers must meet 44 outcomes which relate to these standards.
‘Results and Processes Guide’ (Australian Aged Care Quality Agency, June 2014).
Department of Social Services, ‘The Residential Care Manual’ (2014) 6.
See Chs 3–4.
Department of Social Services, ‘Home Care Packages Program Guidelines’ (July 2014) [3.1.4].
Offices of the Public Advocate (SA and Vic), Submission 95; AGAC, Submission 91; Caxton Legal Centre, Submission 67; The Illawarra Forum, Submission 19; Office of the Public Advocate (SA), Submission 17; Office of the Public Advocate (Vic), Submission 06.
World Health Organization, Elder Abuse <www.who.int/ageing/projects/elder_abuse/en/>.
See Ch 3.
Australian Government Department of Social Security, Charter of Residents Rights and Responsibilities; Australian Government Department of Social Security, Charter of Rights and Responsibilities for Home Care. See further, Ch 10.
Offices of the Public Advocate (SA and Vic), Submission 95.