Early experiences of CDC in Australia highlight the potential of the new system to exacerbate inequalities and the limits of the government’s consumer choice rhetoric in aged care, writes Dr Beatriz Cardona.
The introduction of personalised budgets in community aged care brings Australia in line with other countries including England and Sweden. Various studies emerging from these countries, however, suggest that consumer directed care and individual budgets have not universally empowered frail older people.
Research has noted that in practice the ambition to empower older people by giving them greater choice over the services they receive and who delivers them may have had the opposite effect – at least for those with fewer resources. Although some older people appreciate being able to choose a provider, many find that choice stressful, and most find the ability to influence the actual tasks carried out to be more important.
Compared with young people with a physical disability, studies have found that frail older people are, in general, less prepared to act as customers, except for those with more resources, such as a higher level of education, who have an advantage in navigating the new landscape of care markets.
Preliminary studies of CDC in Australia have also identified the potential of the new system to exacerbate inequalities. The ability of frail older people to make informed choices regarding the best provider and services to meet their needs is impacted by literacy levels, availability of a carer, education and employment history. Managing a home care package requires competency and confidence in a variety of literacies.
A 2016 report on CDC by the Brotherhood of St Laurence noted that more than 70 per cent of Australians aged 65 to 74 are rated below skill level 3 in the Adult Literacy and Life Skills Survey, which is regarded as the minimum required for individuals to meet the complex demands of everyday life in modern society.
In its 2015 formative evaluation of the home care program, KPMG highlighted the concerns of many Aged Care Assessment Teams (ACATs) as to the appropriateness of a CDC approach for vulnerable consumers such as those with dementia or cognitive impairment, the frail elderly without carers, and consumers from special needs groups.
The current consultation on the Aged Care Legislated Review has received more than 140 submissions from service providers, advocacy groups, peak bodies and consumers, with the overwhelming majority expressing concern over the effectiveness of arrangements for protecting equity of access to aged care for different population groups.
Among the key issues identified were:
- the financial viability of delivering services in non-urban areas
- lack of accessible information
- confusion in navigating the aged care system, and
- unrealistic expectations around the ability of frail older people to make informed choices and shop around for providers that can best meet their needs.
There are further concerns regarding the availability and retention of qualified staff given the increased casualisation of the workforce and the ability of a deregulated market to meet the needs of high-cost, high-needs clients, and special needs groups.
Questions were also raised in the submissions about the overall rationale of structuring a competitive market around the capacity of frail older citizens, many in cognitive decline, and their anxious families to be effective customers.
Numerous case studies were provided in the submissions to highlight specific access and cost issues as well as the frustration and despair of many consumers and their carers trying to exercise the choice and control promised to them.
Vulnerable consumers and personalised models
The protection of vulnerable consumers is recognised in the Aged Care Act, which defines groups that need to be taken into account when providing care, including people from Indigenous, non-English speaking, rural and remote, disadvantaged, and lesbian, gay, bisexual, transgender and intersex (LGBTI) communities.
The current measures to remediate disadvantage have been to give priority access to special needs groups through conditions of allocation attached to some home care packages. From 27 February, as part of the next stage of home care reforms, these arrangements will be replaced by a national queue, which according to the Department of Health, will take into account older people’s relative needs and circumstances as determined by ACATs.
Previous prioritisation strategies have not been successful in increasing the use of services by vulnerable communities and the new national queue raises questions regarding the potential risks of placing people with high needs in a queue when they have been assessed as requiring immediate care. For vulnerable communities, multiple barriers including access, location, availability of information and case management support, cost and quality issues and the absence of culturally appropriate programs have been identified as key factors impacting on the capacity of aged care programs to deliver fairness and accessibility for all.
Another strategy that has been implemented by the government to support vulnerable consumers is the provision of advocacy services. Despite the availability of these programs including the National Aged Care Advocacy Programme (NACAP), their effectiveness to address access and quality of service issues for special needs groups is unclear given that NACAP providers report on outputs only, rather than outcomes of their activities.
The Federal Government’s 2015 review of the NACAP notes a range of advocacy issues arising from CDC, including administration costs imposed by providers, filling in forms, especially CDC contracts, reductions in care hours, inadequate communication or explanation about contracts, and requests from consumers to change providers. NACAP providers also report that home care consumers are increasingly requesting assistance in relation to CDC and some of this borders on legal advice.
Access to advocacy services, as pointed out by NACAP providers, is impacted by socio-economic and socio-demographic issues including:
- use of technology
- limited understanding of what advocacy services are or how they can help
- problems with phone communication (for example, for the hearing impaired, those from CALD backgrounds or with dementia
- reluctance to disclose information, especially financial, to an organisation that may share it with other government agencies.
Challenges with personalised models
These experiences and consequences of CDC point to various conundrums and potential pitfalls facing the new consumer-driven aged care system in Australia. The main challenges revolve around the overall effectiveness and fairness of a consumer-driven market model, the training and retention of a stable labour market and the ability of markets to deliver what is regarded as the essential nature of care. Good care takes place within a relationship based on trust and familiarity and this takes time to develop and sustain.
As the experiences with personalised funding in the UK have demonstrated the very nature of care as a personal service that involves the development of a relationship between caregiver and care recipient means traditional market conditions do not automatically hold in the market for care, and even special efforts to create them may not be successful.
A market-based system, in its drive for efficiency, will tend to meet measurable outputs and economise on the less tangible aspects of good care. But these relationship-based aspects, which are difficult to measure and monitor, are the very essence of good care.
Similarly, the ability of frail older people to make informed choices regarding the best provider and services to meet their needs is in many instances limited. Profound inequalities of gender, ethnicity and socio-economic class, cognitive ability, availability of a carer, geographical isolation and literacy and numeracy competence, and the vulnerabilities of frail and disabled older people, positions them at a disadvantage in a market motivated by profit.
Downplaying the vulnerability of frail and sick older people and constructing them as “consumers” ignores the specific circumstances which make them less able to represent their own interests, and more likely to suffer harm than the average consumer.
Early experiences with CDC expose the limitations of the government´s rhetoric of an empowered consumer exercising choice, control and flexibility through individual funding arrangements. The recent transition from collective forms of aged care to individualised models is far more complex and profound in its magnitude and impact than currently articulated in government scripts and narratives on CDC.
Recommendations submitted to the Aged Care Legislated Review to address these challenges range from the creation of frameworks, action plans and dedicated funding for services targeted to special needs groups, and provision of supplements to cover the increased cost of delivering services to them.
The question of consumer protection and quality assurance has also urged calls against self-regulation, which tends to focus on praising and publicising selected positive aspects of a service rather than being comprehensive and should therefore stay with the government.
There are also petitions for stronger remediation measures including retaining a mixed economy of care through block funding specialist services and for those in rural and remote areas where an open market cannot thrive. For many, the challenge will also centre on improving quality of care and quality of life outcomes.
The success or failure of any social care policy must ultimately rest on the acknowledgment that, unlike in many other parts of the modern economy, there is an irreducible time and relationship component to good care. Contractual hourly arrangements and limited funds to purchase essential care mean the costs of providing the time that good care requires rises. This has not been budgeted and costed in any of the government´s funding allocations.
The experiences with direct payments in the UK provide important lessons we should not ignore in Australia. The concepts of choice and control seem less important per se to older consumers than the ability to organise support and care that offered continuity and reliability and even friendship. If providing good care is no longer affordable then we are failing the most vulnerable members of our society and failing to confront the social and political risks associated with a system that promises more than it can actually deliver.
Dr Beatriz Cardona is a research fellow at Macquarie University and sector support development officer at The Multicultural Network.
This article currently appears in the Autumn edition of Community Care Review magazine.