As the aged care system evolves towards a more consumer-driven market, consumers are demanding a stronger focus on consumer protection, rights, access to information and a high quality of service. Although the aged care system has changed over the last few decades to operate more like a consumer-driven market, issues with the model still exist.
Increasing demand for residential aged care has led to an under-supply of residential aged care places, which is set to continue as an increasing number of Australia’s population ages.
The important role of consumers within the aged care system was highlighted by a number of inquiry participants, who drew attention to the significant cost of residential aged care and, at the same time, the dearth of information available to consumers to enable informed decision making.
The ability of consumers to make choices regarding their care was raised by inquiry participants, as entry to residential aged care usually happens suddenly and may be due to medical reasons. Consumers’ choice of facility and care type, ability to move to another facility and to provide open feedback are significant issues for the sector to address.
Another area of concern was the accessibility of the current system for prospective and current consumers, and their family members. The challenges faced by those with communication barriers, including consumers requiring language support, were also raised.
Increased competition within the aged care sector and the utility of consumer ratings in a ‘star’ or similar rating system were identified as ideas for reform.
Aged Care Market
In September 2017, the Aged Care Legislated Review (known as the Tune Review) described the current aged care system as a ‘supply-constrained system where the government controls the number, funding level and location of residential aged care places and the number and level of home care packages’. The Tune Review contrasted this with a consumer demand-driven system, which is ‘one in which the quantity and types of consumer demands for care drive the size and shape of the aged care system’.
In a consumer demand-driven aged care system, the Tune Review set out that a consumer would be assessed as needing care, receive appropriate funding, and would then choose their provider along with how, where and what services would be delivered.
In 2015, the Aged Care Sector Committee, appointed by the Australian Government to create a roadmap for aged care in Australia, stated that the aged care system had undergone changes in recent years to become more consumer focussed:
Increased consumer choice will be a major change into the future. A fiscally sustainable aged care system that requires consumers to contribute to their care costs where they can afford to do so means that there will be increased consumer expectations for greater choice and control.
Box 4.1: Roadmap to a More Competitive Market
The Aged Care Sector Committee set out that creating a more competitive and innovative market would involve consumers being able to choose between aged care providers. Aged care providers would, in turn, ‘respond to the increasing diversity of consumers’ care needs, preferences and financial circumstances’ to contribute to a sustainable aged care system.
Major features of a consumer-driven aged care system are:
Consumers, their families and carers proactively preparing for their future care needs;
A single process to assess a person’s care needs, operated by government and independent of providers;
Consumer access to care and support regardless of cultural or linguistic background, sexuality, life circumstance or location;
Dementia care as a core business of the aged care system;
Increased consumer choice for care setting, type of care and support, with government no longer regulating the number or distribution of services;
A single provider registration scheme;
Market-determined price in a sustainable aged care sector, with government acting as a safety net when there is insufficient market response;
A well-led and well-trained aged care workforce; and
Greater quality and innovation driven by consumer choice.
Catholic Health Australia stated that ‘unlike most other service industries, [the aged care system] is almost exclusively reliant on regulations to ensure the delivery of quality services and to protect consumers’. Catholic Health Australia set out the role of competition in the aged care market:
The contribution that competition in service provision and greater consumer choice and control can make to supporting higher quality services that are more responsive to consumer needs and preferences is diluted in the aged care sector by the rationing of services and the regulated balance of supply of home care and residential care services.
Hall and Prior supported a focus on consumers rather than ‘recipients of care’, and characterised it as a ‘small, but important, shift in the language used in aged care to describe and define itself’. Hall and Prior recommended that aged care providers embrace a customer service orientation to deliver services that residents want:
An important part of a consumer orientation is transparency, open disclosure, and with greater input from consumers into the accreditation process and this move within the revised aged care quality standards is welcomed.
Residents’ rights do not vary between aged care provider, and are protected by the Aged Care Act 1997 (Aged Care Act). The My Aged Care website contains information on quality of care and consumer rights, and sets out: that rights are protected in resident agreements, the Charter of care recipients’ rights and responsibilities – residential care (the Charter), the Accreditation Standards for service providers and that residents have access to a complaints process.
The Charter sets out that care recipients maintain the full and effective use of their consumer rights, along with personal, civil and legal rights, the right to quality care, the right to live without discrimination or victimisation and the right to make a complaint.
Complaints regarding consumer rights in residential aged care can be made to the Aged Care Complaints Commissioner (Complaints Commissioner). The Complaints Commissioner can refer matters to the Australian Competition and Consumer Commission ‘where questions arise as to a service's compliance with the Australian Consumer Law’.
Civil Liberties Australia stated that a greater focus should be placed on maintaining the rights of older Australians:
Australians don’t lose rights and liberties when they pass an age milestone, say 70 years. If anything, they should gain greater rights, more respect, increased consideration and extra care. That is not how the system works now.
Resident agreements are legal agreements between residents and providers and set out the care and services available, fees (including for additional services), how the complaints process will operate in the facility, and residents’ rights and responsibilities. A resident agreement may include other matters negotiated between the resident and the provider. The requirements for resident agreements are set out in the Aged Care Act and the User Rights Principles 2014 (User Rights Principles).
The Aged Care Act further sets out that a resident agreement ‘must not contain any provision that would have the effect of the care recipient being treated less favourably in relation to any matter than the care recipient would otherwise be treated’. The Complaints Commissioner stated that resident agreements ‘cannot waive protections afforded under consumer law’.
Elderlaw stated that individual resident agreements can vary, with two major forms. The first form of resident agreement ‘makes it clear’ that the standard of care required under the Quality of Care Principles 2014 (Quality of Care Principles) must be adhered to, and is part of the obligation of the Provider. The second form of resident agreement ‘merely refers’ to the Quality of Care Principles, which ‘leaves the resident with recourse to the complaints system, and without an enforceable claim for breach’.
Elderlaw was of the view of that the second form of resident agreement was more common, but could be ‘misleading and deceptive’ by allowing the resident to believe that the standard of care they will receive is clear and enforceable when it is not.
Elderlaw suggested reform which would see a resident agreement ensure that an aged care provider arrange and submit to arbitration if requested by a resident or representative.
Mr David Gavin stated that, in his experience, resident agreements were not always adhered to. Mr Gavin described personal accounts of family members of residents of a facility, in which personal hygiene products and mobility assistance were not provided as set out in resident agreements.
Education and Awareness of Consumer Rights
Education on consumer rights for residents of aged care is provided by the Older Person’s Advocacy Network (OPAN), a national network of organisations which delivers advocacy, information and education services to residents and workers in Australian Government-funded residential aged care. The OPAN delivers the National Aged Care Advocacy Program (NACAP), which is funded by the Australian Government.
The NACAP provides ‘free, independent and confidential advocacy support and information to older people (and their representatives)’ who receive Australian Government-funded residential aged care.
On 8 August 2018, the Hon Ken Wyatt AM MP, Minister for Senior Australians and Aged Care, announced extra funding to OPAN to expand its delivery of services. The OPAN will use the $2 million in funding to develop key projects, including: national elder abuse advocacy response protocols, a national decision making system to support older people, a national elder abuse minimum dataset, elder abuse referral and support pathways, and researching the needs of rural and remote populations.
The OPAN currently delivers education sessions on advocacy and rights to more than 40 000 aged care residents each year, but stated that a ‘large number’ of residential care facilities choose to decline OPAN’s offer to conduct free consumer education lessons. The OPAN is currently funded to provide 1400 education sessions per year across Australia, which it stated is ‘only a fraction of the number of aged care facilities that exist across the country’.
The National Association of Community Legal Centres (NACLC) stated that private individuals have access to enforceable housing rights, including consumer claims. The NACLC stated that, unlike private individuals, residents of aged care may not have the same rights as tenants of other housing types, as ‘rights under consumer law are patchy and not well known, and would not cover the full range of rights referred to in the Principles accompanying the Aged Care Act’.
Consumers’ awareness of their rights was questioned by inquiry participants. Anglicare Australia stated that consumer information is not always accessible:
Access to information about rights and responsibilities that is easy to understand is essential to empower residents and drive provider performance and accountability. This is not always available … There is a role here for providers, but equally there is a responsibility for those agencies and associated advocacy bodies to provide the support, advance notice and visibility that residents might need.
The Council of the Ageing Australia (COTA Australia) recommended that providers ensure their staff undertake regular OPAN education on consumer rights.
The OPAN stated that consumers have regularly approached OPAN staff after education sessions in residential aged care facilities to raise issues, and have provided feedback that they were unaware of the service.
An inquiry participant, who did not wish to be named, stated that information on the application of Australian consumer law in a residential aged care setting was ‘seriously lacking’. The inquiry participant suggested that information should be provided in multiple formats which sets out example scenarios on acceptable quality, due care and skill, supply of service within a reasonable time and compensation.
The Quality Aged Care Action Group (QACAG) recommended that all residents and advocates should be provided with consumer advocacy service information on admission, and that ‘independent consumer advocates should be appointed to undertake regular visits to residents and represent them’.
Mrs Kate Mannix expressed the view that the current aged care system denies consumer rights, and ‘prevents the consumer from achieving financial remedies or service redress’. Mrs Mannix stated that ‘aged care recipients are also consumers and should have the same consumer rights as they did when they were not aged care recipients, guaranteed by the standard aged care contract’.
Residents’ reliance on others for information on rights, and how they may apply, was put forward by Mrs Rosaleen Appelhans. Mrs Appelhans stated that residents rely on others for the rights set out in the charter, as ‘these rights almost always need to be enabled for the elderly through mechanisms provided by others’.
Elderlaw drew attention to the lack of redress available to consumers of aged care, stating that the focus of the aged care system is on offering advice about complaints, and stated that, in aged care, ‘there is no redress for the individual, no improvement of the level of attention to their health needs, no overt recognition of harm and causation’.
Some inquiry participants stated that human rights should be focussed on, rather than consumer rights. Anglicare Australia stated that the current focus of the aged care framework ‘forces providers to be naturally risk averse’ which can limit a resident’s right to make informed choices and take risks.
Estia Health stated that ‘an approach that focuses on the protection of rights (consumer protection) does not go far enough’ and does not ‘acknowledge that residential aged care is not a transaction whose quality can be easily measured nor one from which one can withdraw, receive a refund and find another seller’. Estia Health suggested that a human rights-based approach will underpin aged care services in future.
Inquiry participants drew attention to the United Nations’ Principles of Older Persons, which enshrine the need for consumer protection.
The Aged Care Sector Committee stated that older Australians may be reluctant to discuss future aged care needs, and that ‘too often the first point of contact with the aged care system and decisions regarding aged care needs are made during a time of crisis’. The OPAN similarly stated that ‘we are seeing more and more that people enter aged care at a time of crisis’.
Inquiry participants highlighted the challenging circumstances under which families may need to find residential aged care for a family member, particularly if a person requires residential aged care after an injury or hospital stay. The Health Care Consumers’ Association (HCCA) gave a personal account of a consumer trying to find aged care for her mother following a fall:
The family was under significant pressure from hospital nursing staff to find a place and accept an offer. But the family were reluctant to take the first offer as they wanted to know things like: What is the general health of other residents? How long do people generally live at each facility? Is the quality of life good? Do they have access to health care? … The Audit Reports provide some but far from all of this information.
The OPAN also stated that older Australians face pressure from the health system to enter residential aged care:
A lot of people are being pushed out of hospital beds and into residential aged care who may have been able to return home with more planning and support, but it's about freeing up the bed, and that's deeply concerning at both ends.
The reality of consumers’ ability to make informed choices regarding residential aged care was also questioned by Dementia Australia, which stated that ‘market-based incentives do not work in a system that is operating at capacity or under supply. Many residents have no choice but to accept any facility that is available’.
Dementia Australia further stated that those with dementia may find it particularly difficult to obtain an aged care place, as demand is greater than supply:
It seems inevitable that vulnerable, ‘resource-intensive’ consumers, including people with dementia and especially those with more complex care needs, will lose out if we rely solely on market forces to drive access and quality.
The Vintage Reds of the Canberra Region stated that consumer choice related more to consumers considering entering retirement villages than entering residential aged care. The Vintage Reds of the Canberra Region set out that prospective residential aged care consumers’ choice is ‘limited by what they can afford, what is available at any given time, geographical constraints and their particular reasons for needing residential aged care’.
Limited consumer choice was highlighted by Aged Care Matters, which stated that it is ‘extremely difficult’ for residents to exercise choice in aged care homes, as seen in the ‘low rates of changing providers in the event of dissatisfaction’.
G W Hitchen stated that ‘families do not stand a chance of assessing what a nursing home will really be like for their family member’.
Carers NSW suggested that Australian Aged Care Quality Agency (Quality Agency) audit reports ‘could be better utilised to aid consumers and carers in making informed choices in an increasingly consumer driven environment’.
Care Guidance suggested attaching the funding entitlement for residential aged care to the consumer, rather than the provider. Care Guidance stated that this would ‘empower consumers with greater choice and control’, and make it harder for poor performing providers to continue:
This would make it easier for high quality providers to grow their presence with new homes and beds in line with demand for their services, while at the same time making it harder for poorer performing providers to rely on an allocation of bed licenses [approved places] to keep them in the market.
The role of the consumer in providing open, public feedback on aged care was raised by inquiry participants. Care Opinion Australia stated that consumers could drive an improvement in aged care quality:
When consumer feedback systems are public, transparent, and independent of the provider, so that all interested stakeholders can see what consumers are saying and how providers are ‘listening and responding’, then there is a greater likelihood that the quality of care will be improved.
Care Opinion Australia highlighted its web-based platform for residents of aged care, and their family members, to ‘provide direct feedback regarding their experiences’ on a ‘public and transparent’ website. The website is moderated and de-identified, and a closed loop established between the feedback author and the staff in the named service in which providers are able to respond to the feedback.
Carers NSW stated that although the Quality Agency publishes Consumer Experience Reports, these should include a ‘user-friendly interface’ for comparing residential aged care facilities. Further, Carers NSW stated that the current accreditation system for aged care providers, which uses ‘met/not met’ in accreditation audit reports, provided ‘no point of comparison, giving little insight for consumers into the actual quality of a provider’.
Proposed Standard 6 of the Aged Care Quality Standards, which will replace the Quality Agency’s Accreditation Standards from 1 July 2019, sets out the standards around feedback and complaints. The consumer outcome statement for Standard 6 states:
I feel safe and am encouraged and supported to give feedback and make complaints. I am engaged in processes to address my feedback and complaints, and appropriate action is taken.
The corresponding organisation statement in Standard 6 requires the aged care provider to seek ‘regular input and feedback from consumers, carers, the workforce and others’, which will then be used to inform organisation-wide improvements. The provider must demonstrate that consumers and their representatives are encouraged to provide feedback and make complaints, that consumers are aware of advocates and language services and have access to these, that action is taken to respond to complaints, and that feedback and complaints are reviewed.
Care Guidance recommended that assessment against the new Standard 6 of the Aged Care Quality Standards include the content of the resident feedback.
Consumer Experience Reports
The Quality Agency stated that it is moving to provide more consumer-friendly information, and acknowledged that the current provision of information is not always accessible to the consumer:
As of next year, we'll have much richer information around the compliance history of a home, in a much more consumer-friendly form. Our current findings are long text, and we are very aware that consumers don't always find that accessible; we know that there's room for improvement in accessibility of information.
The Quality Agency publishes Consumer Experience Reports for aged care facilities, which may be found alongside the audit reports for a particular facility. Consumer Experience Reports ‘are aimed at promoting consumer choice by capturing the consumer experience of the quality of care and services in aged care’. Assessors from the Quality Agency ask aged care residents a set of interview questions during the accreditation or audit process. The answers are de-identified and collated for publication. Between May and December 2017, 460 Consumer Experience Reports were published to the Quality Agency’s website.
Questions asked of residents include: ‘Do staff treat you with respect? Do you feel safe here? Do staff follow up when you raise things with them?’ Residents are also asked to express their level of agreement with statements such as: ‘The staff know what they are doing. This place is well run.’ A colour-coded bar chart displays consumers’ responses as a percentage against the criteria ‘Never, Some of the time, Most of the time, Always’.
The OPAN supported the publication of Consumer Experience Reports, but stated that the processes in compiling the information were important and must avoid provider involvement in choosing residents to be interviewed:
In some cases we hear of cherry-picking people to be involved—the ones that aren't going to raise too many issues when talking to the accreditation agency. A lot more work needs to be done around those sorts of things, ensuring the consumers inform that type of information.
The Quality Agency advised that it uses a ‘structured process for random sampling consumers for interviews’ to ‘mitigate the risk that selected care recipients are nominated by the home to be interviewed or that others are excluded’. The Quality Agency is working with public guardian agencies across Australia to raise awareness of the Consumer Experience Reports.
Inquiry participants were supportive of the Consumer Experience Reports, and the Aged Care Guild stated that the introduction of this measure had increased transparency in the quality of care.
The COTA Australia stated that it was supportive of an increased focus on the consumer through the Consumer Experience Reports and the consumer outcome statements in the new Aged Care Quality Standards. The COTA Australia recommended that the number of residents interviewed for the Consumer Experience Reports be increased from a minimum of 10 per cent to a minimum of 20 per cent, and the collection of this information on an annual basis.
In contrast, the Community and Public Sector Union (CPSU) stated that the Quality Agency had failed ‘to monitor and evaluate the effectiveness of new tools and processes, in particular, the Consumer Experience Report’. The CPSU also stated that interviewing residents for the Consumer Experience Report had added to the existing workload of Quality Agency assessors, and making the completion of audit and accreditation tasks ‘increasingly difficult to achieve’. The CPSU further stated that the time spent on conducting the Consumer Experience Reports ‘has meant far less time for in‑depth interviews with residents’.
Consumer Rating System
The Review of National Aged Care Quality Regulatory Processes (known as the Carnell-Paterson Review) stated that consumer choice of aged care provider relies on information on provider performance being accessible, and that ‘at present, information on the quality of care in aged care homes does not achieve this objective’.
The Carnell-Paterson Review stated that the ‘segregation and complexity of information makes it difficult for people to compare residential aged care homes’. Further, the Carnell-Paterson Review stated that the performance reporting system could make better use of accreditation audits conducted by the Quality Agency and consumer feedback.
The Carnell-Paterson Review recommended a star-rating performance system which would incorporate information from accreditation audits and Consumer Experience Reports into an overall score for each facility.
Care Guidance stated that consumer feedback is ‘key to differentiating between acceptable and excellent levels of care’, and stated that there were a number of possible models of consumer platforms. Nevertheless, Care Guidance stated that there were some limitations to consumer ratings platforms including fraudulent entries, and stated that any accreditation system would need to be ‘robust’.
Carers NSW recommended a rating out of five be given to a provider, and stated that such a system ‘not only aids consumers to make informed decisions, but also provides an incentive for providers to exceed the minimum quality standard in order to be more competitive’.
The COTA Australia, however, suggested that a comparative rating information website should be developed by the sector and funded by the Australian Government.
A star-rating system was supported by some inquiry participants. In contrast, UnitingCare NSW/ACT stated that a star-rating system used in the United Kingdom of Great Britain’s (UK) aged care sector had not had a positive impact on the sector:
If we look at what has happened in the UK with regards to some of the star rating systems that they've put in place, they've not increased or enhanced the quality of care at all. It could cause a perversity within the system.
Star-rating systems used in the United States of America’s and the UK’s aged care sectors were highlighted by inquiry participants. The HCCA stated that the UK’s star-rating system allows consumers to view an assessment of a provider and requires the provider to display the rating on site and on its website. An online, interactive map is also published which allows consumers to compare providers on a geographic basis.
The Department of Health stated that a ‘star-rating system’ for aged care providers will not be implemented on the My Aged Care website as a star rating system ‘often has the feeling of a consumer rated system’ as opposed to one which evaluates against standards. The Department of Health further stated that a star-rating system may be better suited to being run by industry rather than the Government.
Experiences of Aged Care Consumers
Access to Information
Consumers stated that the information available for prospective residents, and their family members and carers, was difficult to access and could be confusing. Dementia Australia expressed the view that the amount of available information involved in the aged care system, including forms, pamphlets and brochures, was ‘overwhelming’, and ‘had resulted in some consumers resorting to hiring a broker at a cost of $500-800 to assist in finding suitable residential care’.
Civil Liberties Australia set out the challenges faced by family members trying to navigate the aged care system, and the vulnerabilities that exist for those without assistance. Civil Liberties Australia stated that:
… a single person would find it extremely difficult to navigate the system to find a place in residential care. Being alone and in poor health, lacking computer skills and access to transport would be virtually insurmountable obstacles. Financial problems including the sale of a house to fund the accommodation deposit could expose older people to unscrupulous 'service' providers.
The OPAN stated that access to information offered benefits to prospective residents and their families:
Information is power, so the more information you give people, the more opportunities they have. A lot of families are involved when that decision comes. Will my parents use a website when they're looking at residential aged care? Absolutely not: they'll talk to me or my sisters.
The Victorian Council of Social Service (VCOSS) stated that consumers may find it difficult to access information:
Often the only information available to prospective residents is marketing material provided by the facility themselves, whether or not the service has ‘complied’ with accreditation requirements and any sanctions for previous non-compliance.
The COTA Australia stated that consumers find it difficult to access basic information about aged care services, including information on fees and charges, and services available. Conflicting information on bed availability was described by COTA Australia:
Many reported that most residential services identify as having beds available on My Aged Care, for example, yet on enquiry to a specific provider they learned that the only bed available is beyond their price‑range.
Further, COTA Australia stated that a consumer had been told by a provider that ‘they weren’t allowed to give information about fees to consumers over the phone or on the website’, and recommended that consumers have greater clarity over unit prices of services.
Using the My Aged Care Website
The My Aged Care website is the entry point for consumers into the aged care system, and provides information for prospective residents and their family members and carers on aged care services, contacts and support. The website is operated by the Department of Health, and also sets out whether a provider has been issued a notice of non-compliance and sanctions.
The Tune Review stated that although the My Aged Care website had been a ‘major reform to Australia’s aged care system’, there were several areas where improvements could occur, such as information sharing between the website and other government agencies and care providers.
The Australian Medical Association (AMA) suggested that the My Aged Care website link with My Health Record to ‘achieve better communication between the care team, faster access to hospital discharge summaries, fewer medication errors, and better access to Advance Care Directives’.
Aged Care Crisis criticised the My Aged Care website, stating that it is a ‘product of the bureaucratic mind’, and questioned its place within the aged care system:
It is part of the centrally controlled, structured, complex, process driven aged care system that has been created. It is rigid, impersonal and difficult to understand and navigate. It is inflexible and unable to respond flexibility to needs. People readily fall through the cracks.
The HCCA stated that ‘many people do not have ready access to the My Aged Care website’, and suggested that additional information sharing be explored, such as support for advocacy services to advise individuals about residential care entry issues.
Inquiry participants expressed the view that more information should be included on the My Aged Care website. The VCOSS suggested a ‘Trip Advisor’ style review function be incorporated.
Dementia Australia stated that important consumer information, including price and quality, should be available on the My Aged Care website. Dementia Australia further stated that the reliance on the My Aged Care website as an information access point posed challenges for people from culturally and linguistically diverse backgrounds, Aboriginal and Torres Strait Islanders, and the homeless.
The COTA Australia suggested that information on the accreditation process and how residents and family members can participate in it be included on the My Aged Care website.
The Department of Health stated that consumers without access to the My Aged Care website may obtain information through the contact centre, the Translating and Interpreting Service, or National Relay Service, and ‘printed information resources available from My Aged Care assessors and some service providers’.
Consumers With No Family or Advocate
Inquiry participants expressed the view that there were limited protections for consumers with no family or advocate. Mrs Rosaleen Appelhans stated that ‘there is virtually no protection for the elderly who are without friends and family capable of supporting them to exercise their rights. It is hard enough for those who do have such support’.
Similarly, the Combined Pensioners and Superannuants Association of NSW (CPSA) stated that ‘bad things happen whether or not a resident has family or friends who are able to speak up for them, but obviously residents with no one are in an even worse position’. The CPSA supported an Official Visitors Scheme in which independent, impartial observers would be able to raise concerns.
The QACAG stated that some residents of aged care may have family members who live too far away to visit frequently, and recommended that independent consumer advocates be appointed to visit and represent residents.
Mrs Kate Mannix recommended that ‘there should be much more effort to determine whether there is, or is not, a family member or friend or other representative to assist the care recipient’. In the event that no family or friend can be identified, Mrs Mannix recommended that adult protection agencies should be subject to scrutiny and subject to prosecution if quality care is not delivered to the resident.
The OPAN stated that access to advocacy through the NACAP is ‘particularly important for aged care residents who do not have family, friends or representatives to support them in voicing their concerns’. The OPAN suggested that, to address this, aged care providers should be required to provide residents with access to advocacy and consumer education on an annual basis, and that the relationship between the NACAP and the Community Visitors’ Scheme (CVS) be enhanced. The OPAN stated that the CVS should be used more, and could report concerns about mistreatment.
Anglicare Australia advised that some residential aged care services are designed for residents who may not have family or advocate support, and stated that the Brotherhood of St Laurence, Anglicare SA at Brompton and St Bartholomew’s House in Perth ‘provide dedicated services that are so often the closest thing to a home and a community that their residents have ever known’.
Aged and Community Services Australia highlighted the avenues available for consumers with no family or advocate, including the regulatory agencies, state administrative tribunals, consumer advocacy bodies including OPAN and the CVS.
Catholic Health Australia also highlighted the work of OPAN and the CVS, but stated that ‘there is a case for strengthening protection and support arrangements for older people who do not have family, friends or other dependents to help them exercise choice and with their rights in care’. Catholic Health Australia suggested that providers be funded to provide pastoral care and support, which could ‘provide consumer assistance and advocacy independently from day-to-day personal and clinical care’.
The Office of the Public Guardian (Queensland) (OPG Queensland) described the framework for guardianship for adults with impaired decision-making capacity. The OPG Queensland stated that it is a guardianship of last resort:
My guardianship clients in the aged care system are the most likely to have nobody else in their lives. That's why I've been appointed. They tend to have the most complex needs. Some of them have come directly from prison or mental health facilities and go straight into aged care, and they are very vulnerable to abuse and need somebody to represent their rights and interests and speak out on their behalf.
Further, the OPG Queensland stated that the guardianship clients ‘are heavily dependent on daily personal support. They often have limited ability to speak out against ill-treatment, abuse or poor practice’. The Queensland Community Visitor Program (CVP), which operates under the OPG Queensland, is not able to enter Australian Government-funded residential aged care, which limits the ability to act on a vulnerable person’s behalf.
Consumers from Culturally and Linguistically Diverse Backgrounds
The challenges faced by consumers from culturally and linguistically diverse (CALD) backgrounds were highlighted by inquiry participants, and particularly for CALD aged care residents with dementia.
The AMA stated that in 2021, 30 per cent of the older population of Australia will have been born in a country other than Australia. The AMA stated that this presents providers with a ‘major challenge’ to incorporate different cultures, and communicate with consumers who may have low levels of English literacy. The AMA also recommended that aged care providers be culturally aware and informed of Aboriginal and Torres Strait Islander populations.
The Federation of Ethnic Communities’ Councils of Australia (FECCA) stated that people from a CALD background are ‘less likely to utilise residential aged care services’ due to the barriers faced in accessing and engaging with services. The FECCA stated that barriers include: lack of awareness or knowledge of the services offered, complexity of the system, language barriers, and lack of CALD aged care providers.
The FECCA stated that ‘effective communication and an understanding of cultural values are essential to the carer and resident relationship’, and recommended that staff make use of symbols or pictures to convey information if necessary.
The Victorian Multicultural Commission (VMC) stated that there is a support gap for people from CALD backgrounds, particularly when:
Care needs discussion, and the development of care plans occurs without the involvement of an interpreter or bilingual staff member;
Residents and their family members face difficulties in communicating problems and making complaints; and
Forms and paperwork are only provided in English, with no translation or assistance.
The VMC stated that many older people ‘revert to their first language as they age’, making language support particularly important for residents of aged care from a CALD background. Further, the VMC stated that unqualified interpreters or family members have been used to provide interpreter assistance, which ‘jeopardises confidentiality and residents’ independence’.
The VMC recommended that aged care staff be provided with training on ‘how to care for residents from multicultural backgrounds who present additional and different challenges in comparison to mainstream older people’.
The National Council of Women of Australia suggested that providers should ensure that there is an ‘allocated support person who is familiar with client's culture and religious background’. Further, anyone responding to allegations of mistreatment of a person from a CALD background or who is Aboriginal and Torres Strait Islander should have ‘specific training in cultural sensitivity or competence’.
An inquiry participant, who did not wish to be named, recommended the provision of brochures in different languages to be visible in residential aged care.
The experience of Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) consumers was highlighted by the National LGBTI Health Alliance (the Alliance). The Alliance operates the Silver Rainbow program, which provides policy and program advice to the Department of Health and aged care sector to achieve ‘the best possible health outcomes for LGBTI elders by ensuring aged care services are inclusive and accessible’.
The Alliance stated that older LGBTI Australians may suffer from discrimination in residential aged care, such as:
Being threatened with eviction or refused admission to residential aged care facilities;
Visitors, personal care services and partners prevented from visiting or participating in medical decision making;
Refusing to allow LGBTI elders to display public affection, to display cultural tokens, artefacts, pictures or memorabilia, or couples to share rooms;
Refusing to allow a transgender or gender diverse elder to be placed in a ward that corresponds with their gender identity, or being prevented from dressing or presenting according to one’s identified gender;
Physical or psychological abuse, neglect and/or abandonment, including medications being withheld; and
Being involuntarily ‘outed’ or threatening to out somebody’s gender or sexuality.
The Alliance stated that older LGBTI Australians may rely on family members to advocate for them, which can, in some cases, lead to vulnerability:
In some instances, some family members may be not be aware of and/or hostile to their relatives being LGBTI. As a result, LGBTI elders may be vulnerable to having their wishes disregarded by relatives or carers when making financial, property and medical decisions.
Hall and Prior described the efforts of the staff of one of its facilities in providing care and advocacy to a resident who wished to transition to a transgender identity, but whose family was unaware of the resident’s wishes. The resident expressed a desire to wear a dress and then to identify as transgender, but was concerned at the reaction of other residents and family members. The facility staff arranged care conferences with family members, focussing on mediation and education, leading to a positive outcome.
The aged care market experiences a high level of demand for services, which has led to a loss of competition in the market. Consumers are not able to exercise full choice of aged care facility due to: urgent need to enter residential aged care, geographic or economic constraints, and complexity of care required.
Inquiry participants stated that there was a low level of awareness of consumer rights and advocacy services among residents and family members. It was suggested that the My Aged Care website should hold a greater range of consumer-oriented information, including information on how to participate in the accreditation process for residential aged care services and consumer ratings. The accessibility of the My Aged Care website was questioned, particularly for those with language barriers or who find it difficult to use the Internet.
The Older Persons Advocacy Network (OPAN) delivers the National Aged Care Advocacy Program (NACAP), which is funded by the Australian Government. The NACAP provides an important service for consumers, by delivering free, independent and confidential advocacy. The OPAN is able to deliver education sessions on advocacy and consumer rights to around 40 000 aged care residents per year, and recently announced extra funding will enable it to expand its reach.
The Committee believes that consumer choice and awareness would be enhanced by consumer experience reporting including data on the number of complaints and reportable incidents that have been lodged, responded to and resolved at individual aged care facilities. Such reporting would increase public transparency and allow members of the public to access more detail.
A consumer rating system for residential aged care facilities was suggested by inquiry participants. This system could potentially resemble ‘Trip Advisor’, with a combination of star-ratings and consumer feedback. It was suggested that such a system may be more appropriately maintained by the aged care sector, rather than the Australian Government.
Consumers with no family or advocate are reliant on aged care providers for their care and quality of life, and may not be able to communicate issues regarding care or experience for various reasons. The important work of advocates was highlighted by inquiry participants.
The Committee recommends that the Department of Health work with the aged care sector to implement a rating system (for example, a star or point rating system) for residential aged care facilities, and develop an action plan for how such a system could be implemented.
The Committee recommends that the public be provided with information through the My Aged Care website regarding the number of complaints and reportable incidents that have been lodged, responded to and resolved, and the number of complainants, at individual aged care facilities.
The Committee recommends that the Australian Government examine ways to ensure all consumers have access to the Older Persons Advocacy Network (OPAN) advisory services, and include in consumer experience reports the providers that refuse OPAN access to their facilities.
The Committee recommends that the Australian Government agencies responsible for the delivery of aged care services commit to a more consumer-oriented focus, with greater, and more transparent, consumer involvement in the delivery of aged care services.