On the surface, there has been progress.
According to a new report from the Australian Institute of Health and Welfare (AIHW) titled Younger people in residential aged care, the number of Australians aged under 65 living in residential aged care facilities (RACFs) fell by 20 per cent from almost 4600 in September 2020 to around 3700 in September 2021.
The AIHW has been closely monitoring these figures as the Departments of Health and the Department of Social Services cooperatively aim to realise the Younger People in Residential Aged Care (YPIRAC) Strategy 2020–25, in force since September 2020, which aims to have, except for in exceptional circumstances, no people under the age of 45 living in RACFs by 2022, and under the age of 65 by 2025.
As Aged Care News reported in November, this strategy has been implemented in recognition of the serious risk such inappropriate accomodation poses to younger persons’ physical and mental wellbeing.
“The goal of the strategy is to reduce the number of younger people entering residential aged care and support those already living in residential aged care to move into age-appropriate accommodation with the supports they need,” AIHW spokesperson Louise York, explains.
In a joint report titled Younger People in Residential Aged Care Strategy 2020–25 Annual Report 2021 (the report) Senator Richard Colbeck, Minister for Aged Care Services and Senior Australians, and Senator Linda Reynolds, Minister for the National Disability Insurance Scheme (NDIS), congratulate their departments’ own efforts, which they credit as integral to the accomplishment of having 900 fewer younger persons living in RACFs:
“It is clear activities being progressed by the Government, in collaboration with State and Territory Governments, sector stakeholders and younger people themselves, are contributing to significant reductions in the number of younger people entering, and living in, residential aged care,” they write.
Thus, the 20 per cent reduction cited by the AIHW and Senators Colbeck and Reynolds would be worthy of applause, if not for the one fact they all consciously omitted from their public relations material.
Misleading statistics and the morbid reality
In celebrating younger persons leaving a RACF facility, one would imagine such persons have been relocated to new, independent accomodation — or, at very least, be back at their family home.
Neither is the case for two thirds of the younger persons counted.
In fact, AIHW data obtained by Aged Care News reveals the true, morbid reality of the situation: that 570 YPIRAC who “exited” a RACF between September 2020 and September 2021 only did so because they died.
It follows a consistent, five-year trend, with 4634 persons aged under 65 dying in residential aged care since 2016.
According to Tim Naughtin, executive officer at the Summer Foundation, an organisation working to make the phenomenon of YPIRAC a thing of the past, these misleading statistics come as no surprise.
“As much as the Government might like to say, ‘the numbers are coming down’, those numbers are coming down because people are dying or turning 65,” he tells Aged Care News.
Premature death is sadly not uncommon for many younger persons with disabilities living out in the community.
But research data points to the fact that younger persons’ deaths, when happening in residential aged care, may be truly avoidable and occurring independently of their primary condition.
A 2021 epidemiological analysis of 13 years of Australian Coroners records indicated that as many as one in seven deaths of people aged 20-64 years living in RACFs were “premature and potentially avoidable”, with suicide rates noted as three times higher than the older cohort.
The AIHW could not comment on, nor provide a more detailed breakdown, regarding the specific causes of death of the 606 YPIRAC having passed away in the 2020-2021 reporting period.
‘Nothing has changed’
Joseph E Ibrahim is professor at Monash University’s Department of Forensic Medicine and Head of the Health Law and Ageing Research Unit.
A co-author of the aforementioned, epidemiological analysis, he tells Aged Care News that, although the findings rely on data that ends at 2013: “I have no reason to believe anything has changed in that time.”
After the shocking findings, Ibrahim and colleagues Anna Cartwright and Associate Professor Lyndal Bugeja immediately went to work developing a list of recommendations comprising insights from two expert and stakeholder consultation panels.
Four were ranked as most important for implementation: education and training for nursing home staff; implementation of the National Disability Insurance Scheme; support for coordinated care; and increasing residential housing stock that is appropriately designed.
“Not all the recommendations have been implemented and those that have were only partially addressed… so [that’s] another reason I believe the rates of harm will not have changed,” Ibrahim says.
“It doesn’t explain why they haven’t come out”- questions linger about the efficiency of the YPIRAC Strategy
Naughtin adds that apart from the disturbing findings regarding deaths in residential aged care, he and colleagues at the Summer Foundation are exasperated at the lagging nature of the NDIA in regards to relocating YPIRAC into purpose built, Specialist Disability Accomodation (SDA).
SDA refers to a range of housing options that are specifically designed for people with extreme functional impairment or high support needs, allowing for independent living with support from care staff where needed.
Recipients must be registered with the National Disability Insurance Scheme (NDIS) to qualify.
AIHW data shows that the majority of remaining YPIRAC are living in capital cities across the country, which Naughtin says is strange based on the under-utilised SDA supply evident from Housing Hub data.
“Yes, they are obviously bigger states with bigger populations, but they also have a bigger, more mature [SDA] industry… New South Wales and Victoria are far ahead of a lot of the other states in terms of that development,” Naughtin says.
“The number of vacancies we’ve got in New South Wales is around 500; the number we’ve got in Victoria is around 650.
“So yes, there are more people in New South Wales and Victoria, and so that explains the numbers [of young people living within RACFs], but it doesn’t explain why they haven’t come out.”
Furthermore, he adds that without ongoing work to improve the efficiency of the National Disability Insurance Agency (NDIA), young people will inevitably continue to be diverted to RACFs to remedy their acute risk of homelessness.
“So you can be sitting in a hospital bed, and they say, ‘oh, well, you need to move out… you’ve got to find somewhere to go.’
“You can get aged care funding in just a few days, but to get SDA funding from the NDIA, it takes months – and it’s an uncertain process.
“So for some people it takes 12 months, and then they get an adjudication which they don’t agree with, and then they have to appeal.
“So that’s one of the big drivers of people still going in to aged care.”
Naughtin laments that, when looking at the statistics honestly and holistically, progress is not being made, with myriad lives of young Australians with disabilities still in peril.
“Because, in fact, if you’re just to net-out the number of people who were actually getting out into appropriate housing versus the number of people going in, we’re going backwards.”
The AIHW data shows that while 712 younger Australians were admitted to a RACF from July 2020 to July 2021, only 294 living persons actually moved out and into more appropriate accomodation.
“We could wait for everyone to simply die or turn 65, but that’s not really a strategy,” Naughtin says.
Senator Reynolds office did not directly address the rationale behind subsuming the deaths of YPIRAC into the YPRIAC Strategy’s key performance indicators.
However, a spokeswoman for Senator Reynolds tells Aged Care News that the issue is a “historical challenge” that the minister and the Federal Government will continue to address.
“The Morrison Government announced the new Younger People in Residential Aged Care Strategy in September 2020, which has seen a significant reduction in younger people living in aged care,” she says.
“Importantly, the strategy is now ensuring that younger people do no enter residential aged care, while also providing a meaningful pathway for young people to leave residential aged care should they wish.
“Senator Reynolds believes that no younger Australian with disability should be forced to live in aged care because there is no alternative”.
More about YPIRAC
Over the past decade, the number of Australians aged under 65 living in a residential aged care facility (RACF) at any given time has typically ranged between 5000 and 6000.
Of the 3700 YPIRAC recorded in September 2021, only 886 have officially recorded a goal of leaving.
This means that 54 percent of the YPIRAC cohort aged under 45, and 73 percent of the cohort aged between 45 and 65, remain living in a RACF without active assistance seeking an alternative.
In response to this, the YPIRAC System Coordinator Program, a federal government initiative, is providing outreach support across the country to ensure that all YPIRAC have the opportunity to conscientiously understand their rights and options outside of residential aged care, as well as to connect them to alternative housing services.
Younger persons can consent to remain in a RACF if they wish, and such a decision may be optimal in exceptional circumstances
The AIHW will continue to report on the number of younger people living in permanent residential aged care on the GEN Aged Care Data website.
Free, comprehensive support is available for all YPIRAC from the Summer Foundation: to find out more about the support they offer, as well as some of the success stories of their clients, follow this link.