Carers may not be accessing available respite services because of quality and safety concerns and a perception that residential respite may be “negative and even risky”, the aged care royal commission has heard.
The Royal Commission into Aged Care Quality and Safety, sitting in the regional Victorian town of Mildura, will this week hear evidence focusing on respite care, as well as the toll that a caring role can take on carers.
In opening statements on Monday Senior Counsel Assisting Peter Gray QC the commission the respite system in Australia is in need of reform.
He said a 2015 survey by the ABS found 58.9 per cent of carers hadn’t received assistance from organised services within the last 12 months and 86.2 per cent had never used respite care, including 55 per cent who said they didn’t need it and 10.8 per cent who said the care recipient didn’t want it.
“This still leaves a large number of people who would like respite but have never had it,” Mr Gray said.
“It also raises questions about why a very large group of primary carers do not wish to try it. Could this be because of concerns about its efficacy, its quality or even its safety?”
Mr Gray noted there were also “expert and anecdotal indications” that residential respite was “too often perceived as a negative and and even a risky experience”.
Ambiguity around purpose of respite
He said there was ambiguity around who respite was actually supposed to benefit – the recipient or the caregiver.
“It should of course benefit both and be for the overall sustainment and enhancement of the care relationship,” he said.
“In technical terms, however, the way the need for respite care is assessed may not adequately reflect this.”
Mr Gray said there is a range of government-subsidised services to support carers, but navigating the system is difficult and can act as a barrier to both accessing respite and maintaining the demanding role of carer.
He also said evidence suggested there may be “inadequate coordination” between the two key pathways to carer support, the Carers Gateway – which links carers to support services – and my Aged Care, used to find respite.
The evidence the commission will hear over coming days, he said, will suggest that opportunities have been missed and reform is needed, “particularly reorientation towards reablement of the elderly person using respite, and coordination of support services to allow carers to benefit”.
The figures on informal carers
Mr Gray said in 2015 there were 2.7 million informal unpaid carers, representing 12 per cent of the population. Of those, 420,700 were primary carers of people aged over 65.
In 2015 carers provided 1.9 billion hours of unpaid care according, to a 2015 Deloitte Economics report prepared for Carers Australia.
Caring is also a gendered issue, Mr Gray noted, with women making up more than 68 per cent of carers in 2015.
Last year, 2,522 residential facilities provided respite care and the use of residential respite care is increasing, with 2 million days accessed in 2017-18 an increase of 120,000 on the previous year.
CHSP services, including in-home, community day centres and cottage based respite, was provided to more than 46,000 people last year by 556 providers.
Mr Gray told the commission that respite is also “theoretically” available through the home care package program under CDC. However, there were often are insufficient funds for respite once other services have been paid for, not to mention the long waiting times for a high care package.
It was a “glaring gap in the data” that the health department doesn’t hold figures on respite accessed via home care packages, Mr Gray said.
Struggle to meet demand
Mr Gray said as Australia’s population aged the number of available carers would not keep up.
“These demographic changes result in more people who need care however the number of people able to provide this care is anticipated to rise at a much slower rate,” he said.
“There’s a very real challenge in supporting the growing number of people who choose to age at home with decreasing numbers for family and friends available to provide.”
He said while many chose to take on the role of carer, the task could have detrimental effects on their health, wellbeing and financial security.
“Over time not only might the carer be affected, but so might the quality of care that their loved on receives,” he said.
“If informal care becomes unsustainable permanent entry into a residential aged care facility will probably result, at significant public cost.”
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