6.36 The following section outlines how the National Decision-Making Principles and the Commonwealth decision-making model may apply to aged care. Aged care is an increasingly important area of federal responsibility in the context of Australia’s ageing population. The Australian Government is responsible for the funding and regulation of most residential aged care and home care packages, under the Aged Care Act, as well as social security payments, such as the age pension and the carer payment.
6.37 Dementia related policy imperatives and elder abuse concerns have produced a raft of reports on aged care issues. The Australian Government has responded to them with the Living Longer Living Better reforms to aged care. Changes starting from 1 July 2014 include income testing for home care packages, new accommodation payment arrangements for residential aged care, and the removal of the distinction between high and low care in residential care. Consultation on the exposure drafts of subordinate legislation slated for commencement on 1 July 2014 began in March 2014.
6.38 In referring to the Living Longer Living Better reforms, Caxton Legal Centre submitted that it is concerned about the ‘omission of the CRPD’ as well as the weakening of human rights principles through the exclusion of the Residents’ Lifestyle Principle in the new Quality of Care Principles.
6.39 The Commonwealth decision-making model answers the calls in academic commentary, reports and in the submissions to the Inquiry for clear, national guidance for substitute decision-making in aged care that is compliant with the CRPD.
Individual decision-making in aged care
6.40 At present, decisions in aged care, ranging from personal care and visitation to accommodation and medical treatment are made in various ways: by the aged care recipients themselves; informally by their families or carers; or by formally appointed substitute decision-makers like guardians.
6.41 Informal decision-making for an aged care recipient seems to be widespread and accepted 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. The Australian Guardianship and Administration Council (AGAC) submitted such ‘informal decision making’ or ‘de facto arrangements’ were initially approved as ‘less restrictive alternatives’ when compared to formal guardianship appointments but that informal decision-making lacks safeguards against abuse as required by art 12(5) of the CRPD.
6.42 On the other hand, government agencies and service providers prefer the formality of legal arrangements for aged care decisions. AGAC’s experience has been that Commonwealth agencies tend to assume that most people with disability have formally appointed guardians and when forms are designed on this basis, state and territory tribunals have been periodically ‘inundated by applications for appointment of guardians or administrators’ to meet the specific purposes of asset assessment or an application under the Continence Aids Payment Scheme.
6.43 The Aged Care Act is ambiguous about informal and formal substitute decision-making for people who may require decision-making support with respect to aged care. Section 96–5 of the 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.
6.44 There seems to be a distinction between ‘representation’ for binding contracts and ‘authorisation’ for informal correspondence. However, there is inconsistency in the use of the ‘representative’ throughout the Commonwealth laws and legal frameworks for aged care recipients. The Act contains references to a ‘legal representative’ to imply a guardianship arrangement; ‘representative’ to refer to an advocate; and an undefined ‘appropriate person’.
6.45 Stakeholders emphasised the right to autonomy of aged care consumers, and the importance of supporting them in decision-making. The Centre for Rural and Regional Law and Justice, and the National Rural Law and Justice Alliance stressed the value of supported and co decision-making arrangements in aged care, which is particularly relevant in the regional and rural context.
6.46 Stakeholders reflected on the need to balance duty of care and the dignity of risk in aged care decision-making. 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.
6.47 The Mental Health Coordinating Council expressed concern about the chemical restraint of people with mental illness who are deemed to be ‘challenging’ in aged 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.
6.48 The Office of the Public Advocate (SA) suggested an amendment of the User Rights Principles 1997 (Cth), made under the Aged Care Act, to minimise and eliminate the use of restrictive practices in aged care. OPA (SA) recommended a clear definition of each restrictive practice, a requirement that non-coercive measures be considered and a distinct authority for restrictive practices to be used. Restrictive practices are discussed in more detail in Chapter 8.
The Commonwealth model and aged care
Proposal 6–2 The Aged Care Act 1997 (Cth) should be amended to include supporter and representative provisions consistent with the Commonwealth decision-making model.
6.49 The ALRC proposes that the Aged Care Act be amended in the light of the National Decision-Making Principles and the Commonwealth decision-making model.
6.50 While the ALRC does not intend to prescribe a comprehensive new decision-making scheme for aged care, some key ways in which the Commonwealth decision-making model might operate in this area are outlined below.
6.51 Division 2 of the Aged Care Act lists the objects of the Act, in providing for the funding of aged care. These objects include such matters as encouraging aged care services that ‘facilitate the independence of, and choice available to’ recipients and to help recipients ‘to enjoy the same rights as all other people in Australia’. The extensive set of objects does not, however, make any direct reference to decision-making.
6.52 The ALRC suggests s 2–1 of the Act could be amended to incorporate principles relating to decision-making and supported decision-making, or that a principles provision could be inserted into the part of the Act which will contain provisions relating to supporters and representatives.
Supporters and representatives
6.53 The definition of ‘representative’ in the User Rights Principles appears to conflate a decision-maker chosen by the care recipient, for example, a partner (a supporter) with a formally appointed decision-maker, such as a holder of an enduring power of attorney (representative).
6.54 The proposed model will provide new approaches for the involvement and regulation of representatives in decisions by aged care consumers. Supported decision-making in the aged care context means that people who may 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 services they receive. For fully supported decision-making in aged care, the ‘will, preferences and rights’ standard would replace the existing ‘best interests’ test, in compliance with the CRPD.
6.55 The Commonwealth decision-making model would apply from the first trigger for decision-making by an aged care consumer. Under the framework, a potential aged care consumer of residential or home care services who has impaired decision-making ability would make decisions about assessment of his or her care needs by the Aged Care Assessment Team with the assistance of a supporter or in consultation with a representative.
6.56 Often, the decision to undergo assessment of care needs is made under pressure when a crisis has arisen for the potential aged care consumer. There are likely to be benefits for both consumers and service providers, where the consumer has a supporter with whom to make a decision.
6.57 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.
6.58 It will be 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 service providers of aged care. Advocacy and safeguarding of rights are critical to preventing elder abuse. Under an effective, nationally coordinated model, the aged care consumer will receive assistance from supporters whose role and duties are specified. They will know that they are ultimately responsible for the decision made with the assistance of a supporter. 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 the representative will be subject to safeguards in the system.
6.59 Where the rights and responsibilities of the aged care consumer are clearly set out under such a model, the service provider will be assured that a consumer who has a supporter, will have had the agreement explained to them in an appropriate manner and understand what is signed. If a representative signs an agreement, the service provider will know that the contract is in accordance with the wishes of the consumer and that it is legally binding.
6.60 A suite of accreditation standards and guidelines made under the Aged Care Act would need to be revised to specifically acknowledge and implement the supporter and representative model. 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. Currently, the accredited provider must be satisfied that the nominated person has a connection with the resident, and is concerned for the ‘safety, health and well-being’ of the resident. The inclusion of the supporter and representative scheme in the Act would apply the more specific and subjective standard of the ‘will, preferences and rights’ of the person to these aged care decisions.
6.61 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 structured and consistent guidance so that an aged care consumer is presumed to have the ability to make decisions, is entitled to support in making those decisions; and, if a representative is appointed, to have a representative make decisions that accord with the will, preferences and rights of the consumer.
On 1 July 2012, the Australian Government assumed full funding, policy and operational responsibility for the Home and Community Care services for older people in all states and territories except Victoria and WA. The 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. In May 2013, Victoria has agreed to transition responsibility for HACC for older people to the Commonwealth from 1 July 2015 and in August 2013, WA has agreed to do the same from 2016–2017.
From 1 July 2014, the Australian Aged Care Quality Agency (instead of the Department of Social Services) will be responsible for the quality review of home care services. The Quality Agency was established by the Australian Aged Care Quality Agency Act 2013 (Cth). From 1 January 2014, the Australian Aged Care Quality Agency has 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 Principles 2013 (Cth), Quality Agency Reporting Principles 2013 (Cth) and other legislative instruments issued pursuant to the Aged Care Act 1997 (Cth).
‘Caring for Older Australians’ (Inquiry Report No 53, Productivity Commission, 2011); 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).
See Aged Care (Living Longer Living Better) Act 2013 (Cth) and associated legislation.
Department of Social Services, Reform Overview <http://www.dss.gov.au/our-responsibilities/ageing-and-aged-care/aged-care-reform/reform-overview>.
Department of Social Services, Get Involved <http://www.dss.gov.au/our-responsibilities/ageing-and-aged-care/aged-care-reform/get-involved>.
Caxton Legal Centre, Submission 67.
John Chesterman, ‘The Future of Adult Guardianship in Federal Australia’ (2013) 66 Australian Social Work 26; ‘Caring for Older Australians’, above n 28, rec 15.10; Office of the Public Advocate (Qld), Submission 05; Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20; Law Council of Australia, Submission 83.
Victorian Law Reform Commission, Guardianship, Final Report No 24 (2012) ch 15, 318.
Australian Guardianship and Administration Council, Submission 51.
As part of an application for residential aged care.
Australian Guardianship and Administration Council, Submission 51.
Aged Care Act 1997 (Cth) s 52F–2.
Ibid s 81.1(1)(c)(ii).
Ibid s 44.8A.
Centre for Rural Regional Law and Justice and the National Rural Law and Justice Alliance, Submission 20. The submission 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.
The Illawarra Forum, Submission 19.
Mental Health Coordinating Council, Submission 07.
Office of the Public Advocate (SA), Submission 17.
User Rights Principles 1997 (Cth) para 23.25.
The Aged Care Assessment Service (ACAS) in Victoria.
See, 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.
Department of Social Services, ‘The Residential Care Manual’ (2014) 6.
Department of Health and Ageing, ‘Home Care Packages Program Guidelines’ (August 2013) 3.1.4.