Twenty years ago, Patrick Evans beat cancer. Now aged 76, the repercussions of the radiation treatment that helped him are setting in.
“He has very serious aspiration and that causes him pneumonia and that lands him in hospital on a regular basis,” his wife, Inda, said. “He had a very bad episode last year and was basically in a life or death situation.”
In February 2023, Patrick had an assessment for his support needs, organised through the federal aged care system. He was initially placed in residential care after a severe bout of pneumonia, but he recovered well. In April he and Inda requested a reassessment, with the aim of accessing support to keep Patrick at their home in the southern highlands in New South Wales.
That’s when the waiting began.
The reassessment took six months. Finally reassessed in September, Patrick was put in line for a $59,000 level four package. Once it kicked in, that would pay for things such as a bed to allow him to sleep upright and minimise the risk of aspiration, assistance with enteral feeding, physiotherapy and more.
Nearly 12 months later, Patrick is still waiting for funding.
Inda said the My Aged Care website said the “maximum waiting time” was six to nine months.
“Once the nine-month period was up [in July] then all of a sudden the website said the waiting period was no longer nine months but 12 months.”
Ageing at home costs taxpayers substantially less than residential care and is vastly preferred by people themselves.
Current government support for home care allocates funding to people based on a four-tier level of need.
That system is set to be reformed under Labor’s proposed new aged care act. But until then, the cap on the number of funding packages has left tens of thousands of people on a growing waiting list. For those with higher needs, the wait can stretch more than a year.
“The warning lights in our heads are already flashing wildly,” the general manager of aged care provider BaptistCare’s at-home program, Sarah Newman, said.
“Whatever happens [with the new legislation], we have an urgent need right now. People are dying without getting the care they need. They’re being forced into residential care prematurely.”
Representatives from the Department of Health and Aged Care told a Senate estimates hearing in June that as at 31 May, 68,109 people were waiting for a home care package. Of that number, 50,381 were waiting for a level three or four package, with an average wait of more than 10 months – an alarming rise from the average 1 to 3 months in 2022.
But that is only half the story. The government does not publish statistics on how long it takes people to get assessed in the first place, but the University of Technology Sydney’s Ageing Research Collaborative estimates an average wait for assessment of 17 to 38 days.
Newman said in some cases it was much worse: that there were regions in which people in need were told they could not be added to the waitlist for assessment at all and should call back another time.
“That sort of thing is just awful,” she said. “You certainly see a drop in the quality of life. And carer burden is a big thing for people.”
She said when people received an appropriate amount of support in a timely fashion, their health could improve. However, the cost to the taxpayer escalated the longer people were not provided timely care, she said.
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“They deteriorate far more rapidly than they would otherwise.
“If you ignore people at a point where they really need some of that earlier intervention, and you let them continue to deteriorate, then you’re up for a higher cost at the end of the day.”
The aged care royal commission recommended three years ago that a new aged care act come into effect no later than 1 July last year. But the government has repeatedly pushed that date back, with older people, their advocates and the aged care sector becoming increasingly frustrated by the delays.
The legislation needs to be before parliament this year if it is to have proper scrutiny before it comes into effect by the currently proposed date of 1 July 2025.
On Tuesday, a deal between federal Labor and the Coalition on the reforms seemed imminent, with Anthony Albanese referring to “constructive, detailed” negotiations, and saying he was hopeful of an agreement with the opposition “very soon”.
A spokesperson for the minister for aged care, Anika Wells, said support at home would be the centrepiece of the forthcoming Aged Care Act.
“Quite simply, we want older people to remain independent in their homes for as long as possible,” the spokesperson said.
“Support at home will bring some of the current in-home care programs together and ensure improved access to services, equipment and home modifications.”
In the meantime, though, waiting has taken a huge toll, Inda said.
“It’s pretty stressful, I can tell you that, especially on me, because I’m doing 24/7 care. And I get no respite unless I put him back into a nursing home, for respite care, and I’m entitled to that as a carer but that doesn’t mean I get it, because the number of places and times that’s available is very sparse,” she said.
“When I get stressed, it stresses Patrick out, and there’s nothing we can do about it … You get your hopes up, they get dashed again.”