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Carers, consumers and costs: getting back to basics for 2021

The end of 2020, the year of the unprecedented, is finally near. If you close your eyes and listen carefully, you can hear the collective sigh of relief across Australia. Look out the window and you’ll things are back in action, too: state borders reopening, restrictions on family gatherings, public activities and even residential aged care lockdowns are finally being loosened.

The COVID-19 pandemic has clearly revealed deep cracks in the system. But despite the continuing royal commission, the pandemic has also provided convenient cover for governments in other ways, by diverting public attention from the many serious problems in the aged care system that need attention.

The deaths in aged care facilities constitute over 75 per cent of all COVID deaths in Australia to date. Yet many of the measures taken by proprietors and management to protect their residents seem not only to have failed to protect their residents, but to have actually caused significant suffering as a result of the very rigid social isolation measures taken to prevent family members maintaining contact.

What are the options? For those of advanced age who need help with care but seek an alternative to residential facilities, the impossibly lengthy waiting lists for Home Care Packages continue to present a massive obstacle. The high costs and rapid decline in value of HCPs are also deeply concerning, indicating that the invisible hand of Consumer Directed Care (CDC) has failed to deliver the changes promised by its market advocates.

The evidence presented in the Financial Performance Survey of the Aged Care Sector for June 2020, produced by industry accountants Stewart Brown, for example, shows that since 2010 there has been a reduction of over 50 per cent in the hours worked per week for consumers on the highest package level, Level 4. The decline has seen the hours worked per client per week reduced from 16.9 hrs to just 8.2. While the decline has been long-term, it has clearly accelerated since 2018 when CDC effectively became the industry standard. The reduction in lower levels of package, while not quite so dramatic, is also deeply concerning. Other research has shown that consumers are confused, not delighted, by the choices presented to them.

Comparable countries have long provided much more intensive support at home, with such common entitlements as out of hours home care services in the evenings, through the night and over weekends. These sorts of measures are the basics of care at home. Rather than invoking warm and fuzzy marketing images of consumer choice as a magic solution, we need to be working to get these basics right.

The failure to acknowledge and respect the contribution of carers should be a national concern of the first order. Readers of Aged Care Insite won’t need to be reminded that unpaid carers support more than twice the number of older people in need than formal services. Even when formal services are used, unpaid family caregivers are so often the key to success.

We should be celebrating the contribution of these unpaid and long ignored heroes of the aged care field in this country. At home they provide the backup and certainty every day, as well covering nights and weekends when community care services are not in action.

In residential care, too, carers remain vital – providing emotional support, social connection and personal meaning, as well as important practical support for which paid staff cannot substitute.

Survey research published by Carers Australia has shown that carers have borne a disproportionate share of the responsibility during the pandemic: yet they have received almost no recognition. The results of the 2020 Carers Survey found that although 60 per cent provided 40 hours care or more per week, and 78 per cent at least 20 hours, 40 per cent of those caring for older family members were not asked about their own needs.

Although the long awaited Carer Gateway has been touted as a significant new resource for all carers, the majority of those surveyed had either never heard of it (44.1 per cent) or knew of it but never found a use for it (42.7 per cent). Yet almost 60 per cent of carers reported that their needs were not considered by services who provide support for their loved one.

These problems are not isolated. A review of this evidence led Dementia Australia to release a report which contained poignant recommendations that “people living with dementia [need to] have access to their designated carers”.

Essential visits, the report argues, must be safely integrated back into residential aged care settings. Further, the report calls for aged care providers to be supported to provide relevant social support (not just nursing care) and to ensure that family visits continue as a means to “promote inclusion, meaningful participation and social connectedness”.

Before we end the year by congratulating ourselves again for surviving the pandemic so well in Australia, we need to make sure that we have got the basics right. Going beyond the current crisis truly needs must, of course, ensure we have a financially sustainable system. But it must also ensure the approach is based on recognising service users, their unpaid family carers and the staff of aged care services.

Michael Fine is an honorary professor at Macquarie University.

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