Paulene Bates, aged 44 at the time, could not believe her situation.
“I’m going to die in aged care,” she said to herself.
It was seven years ago and Bates, living with a disability, needed alternative accommodation after a hospital admission.
“I didn’t want to go back home, so I was in the hospital for a while and I said to the transition nurse at the time, ‘please find me other accommodation’.”
Bates was presented with just two options, and both were rooms inside residential aged care facilities (RACFs).
“I was very shocked,” Bates said.
“I wasn’t given any alternative. I was 44 and I thought, ‘here I go into aged care’.
“I just thought I’ll end up dying in aged care and that was it.”
Bates was speaking online at Summer Foundation’s Annual Public Forum to discuss and resolve what is being done – and what still remains to be done – to achieve successful resolution to the issue of young people in aged care.
Hers was a less-than-desirable situation – and she is not alone.
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.
Whilst today’s figure, 3899, signals a promising downward trend, disability sector advocates say that more needs to be done to ensure those living with disabilities have greater choice and control over their living situation.
Carolyn Finis is the chief operating officer of the Summer Foundation, an organisation committed to resolving the issue of young people living in aged care.
She tells Aged Care News that premature admission into aged care has a number of detrimental impacts on a person’s wellbeing.
“It’s not a place to be on a journey of recovery,” Finis says.
“What we typically find is young people who are living in aged care rapidly lose confidence, and they also lose functionality.
“Things are done to them and for them, so the things that they might have come into an aged care setting able to do for themselves, they quickly lose that functionality and competence.”
She adds that social isolation is another devastating consequence of the age-inappropriate setting.
“People lose connection to family and friends – those connections just drop off very rapidly once a young person enters aged care,” she says.
And any social connections made within a RACF are inherently unstable.
A royal commission submission documents friendships made with elderly residents as a potential source of trauma for young people: blossoming only to imminently, and inevitably, perish.
“I am always seeing death and I can’t handle it,” a young resident reported.
“I get emotional and I can’t sleep or eat. I can’t stop crying.
“You make friends and you get so close and when they die I breakdown and cry.”
Life beyond aged care is possible
Thankfully, Bates’ prediction did not come true.
After six long years inside a RACF, Bates, despite being constantly told there were no other options, made a call to the Summer Foundation that changed everything.
“I got another coordinator; her name was Nikki,” Bates said.
“She sat down with me and said, ‘you know, I can get you into your own apartment in Docklands…’.”
“I was just overwhelmed.”
After years of being presented no options beyond the four walls of her RACF quarters, Bates said she realised how easy control over life could be, given the right support.
“It is easy, you’ve got a voice, use it,” she said.
Now residing in a Specialist Disability Accommodation (SDA) apartment in Docklands, Melbourne, Bates’ life is flourishing.
With accommodation that is modified to her needs, and a disability support worker present when she chooses, Bates is able to live and socialise on her own terms.
“When you are in aged care you are restricted. You’ve got to eat when they eat, go to sleep when they sleep.
“Now, you know, the world is your oyster so to speak. You can do everything you want.”
“I am a social butterfly so [I’m] always out shopping, entertaining.
“When people come over, they’re visiting you, not everyone in the nursing home.
“You’ve got your privacy. It’s just – it’s unbelievable really.”
More work to be done on behalf of the thousands still in RACFs
Data indicates that as at September 30, 2021, approximately 825 out of the 3899 younger people in residential aged care had a documented goal to leave.
Most, like Bates, were admitted due to the inability of disability services to render timely assistance upon hospital discharge.
Finis says hospital settings are looking for a quick solution so it’s really critical that the NDIS can shift to be as responsive as the aged care setting for this problem to ultimately be resolved.
She notes that a small subset of young persons living in aged care may not be eligible for NDIS funding, such as those admitted for palliative care purposes.
However, this still does not justify such living arrangements.
“I would hope we can better manage palliative care in the community,” Finis says.
“There should still be other home settings available other than RACFs for these young people.”
The majority of the young people in care, Finis maintains, have high and complex support needs,
“… which is very consistent with the eligibility for specialist disability accommodation.
“Whilst waiting lists are common for many government support services, SDA housing is not currently being accessed at capacity.
“We know that the SDA annual budget is $700 million,” Finis says.
“But at the moment, or certainly, as of the 30th of September, there was only $214 million of SDA funding in NDIS participant plans.
“So it’s been budgeted for, but not all of the people who are eligible for it have it in their plans yet.”
And this is despite an estimated 78 per cent of young people in residential aged care being registered with the NDIS.
“A referral shouldn’t come to an ACAT (Aged Care Assessment Team), unless all of those disability support options have been fully explored,” Finis says.
Although less than a quarter of the remaining young people in RACFs have recorded their desire to leave with the NDIA, this may not be a true reflection of their conscious sentiment.
“If you can imagine someone who’s been living in a fairly isolated way in an aged care setting and feeling very displaced from their former life, to then have the suggestion that you could move out of here and you could change that: it can actually be a really terrifying proposition,” Finis says.
“People can have the desire to move out, but to be able to actually follow through on that [requires] a journey of patience and a journey of support.”
“It might involve many visits with a young person, many conversations that might involve a young person in aged care, meeting someone who’s made that journey, and hearing and seeing that it’s possible.”
Bates now works with the Summer Foundation as an advocate, with her bright smile and tale of resilience serving as a beacon of hope for others.
“Speak up because it can happen and it will happen. I’m living proof,” she said.
“You’ve got to speak up with the right people behind you: positive, no negative energy.
“Get the right support coordinator and things will go your way.”
Federal Government reiterates strategy for way forward
Senator Linda Reynolds, federal minister for the NDIS, told the Summer Foundation Annual Public Forum that she is committed to realising the goals set out in the government’s Younger People in Residential Aged Care Strategy 2020-2025, that:
- No people aged under 65 should enter aged care from 2022
- No people aged under 45 should be living in aged care by 2022
- No people aged under 65 should be living in aged care by 2025
“We all share a passion that no younger Australian should live in aged care, but I also equally am convinced and determined that no younger Australian or no NDIS participant will be forced to do something that goes against their ability to have full choice and control over their lives,” Reynolds said.
She noted that SDA housing is not the silver bullet, as not all NDIS participants are eligible.
“We can’t be responsible for all social housing for people with disability but we can assist them on a plan to modify their home,” she told the forum.
However, Minister Reynolds tells Aged Care News that the Government’s 2020-21 budget invested $10.6 million to establish a national network of up to 40 system coordinators to directly help younger people living in, or at risk of entry to, residential aged care.
“The Commonwealth is working with states and territories through various forums to increase appropriate accommodation and support options for younger people not eligible for the NDIS,” she says.
Summer Foundation provides vital links to housing
Through their online platform Housing Hub, the Summer Foundation connects people living with disabilities and their support team with accommodation options across the country.
This is not limited to SDA housing, but also non-SDA supported accommodation, private rentals and even properties for sale.
Finis says there are many housing solutions available, but they’re not necessarily known to the [hospital] discharge teams.
“We have the relationships with the housing providers, so we can pull in a range of housing options that discharge teams are just not equipped to,” she says.
“And so if that can be done really thoroughly and funded by the NDIS, at that point of discharge, that’s really where the solution sits.”
Assistance for aged care providers and workers
The Summer Foundation is open to assisting RACFs and their staff navigate the onerous system of NDIS compliance, as well as what can be done to help younger persons transition into independent living.
“We’re really keen and open to working with aged care providers to help them support conversations with younger residents about what moving out could look like and, and how we could support with that,” Finis says.
“Our main message to RACFs and their team is that we are here to help.”