Karlene McCabe has spent two years caring for her partner around the clock. Now, burnt out and waiting on funding that may be another ten months away, she is fighting to put a human back in aged care decisions.
Karlene McCabe is 69, and she is exhausted.
She retired at 67 to look after her partner of almost 29 years, who is older than her and has been unwell for some time. After hospital stays and falls at home, doctors found a brain tumour. It is calcified, meaning it isn’t growing, but Karlene says that could change.
The tumour affects her partner’s balance and muscle strength. Physiotherapy is what keeps them walking and standing upright. Almost everything else falls to Karlene: the driving, the cooking, the dressing, the showers, and the daily diabetes injections she was taught to give so the couple wouldn’t have to pay $98 each time a nurse came.
“I’m burning out,” she told HelloCare. “Everything I’m doing is for the care of my partner. It’s improving their quality of life, but it’s dragging down mine.”
The couple have lived modestly and independently, and Karlene says that makes the situation harder to accept. They now live on about $900 a fortnight in pension. After the bills, petrol, car insurance and private health cover, there is little left.
Karlene has her own health problems, including a breathing condition and limited mobility after a serious arm fracture, and she can’t do heavy lifting. Family have helped paint the house and friends have pitched in when she has been unwell.
“We’re very independent people, not asking for help,” she said. “I’m stressed out. My partner’s stressed out.”
Her partner was assessed in October 2025 under the old Home Care Package system and approved for Level 3 of four. When Support at Home began on 1 November, Karlene says that rating was carried across to Level 3 of the new eight-level scale, with no new assessment.
“It just changed a 3 to a 3,” she said. “The algorithm only reads black and white, tick boxes. It can’t read the human elements in the assessor’s report.”
The funding then took until 30 June 2026 to be released. Karlene says she had to complain to two separate government bodies, and the couple paid for care out of their own pocket in the meantime.
By then her partner’s health had declined and they urgently needed reassessing. Karlene reached out to Shadow Minister for Aged Care Anne Ruston, whose office helped secure a second assessment about three weeks ago. This time her partner was assessed at Level 7.
The right level, though, has not brought the right funding. Karlene says the department has told her the money could take up to another ten months to arrive.
“We got it approved, and now it looks like we have to wait another ten months for the money to be released,” she said.
For Karlene, the ABC’s Four Corners investigation into the Integrated Assessment Tool (IAT) in mid-August explained what she had been living through.
Professor Kathy Eagar later told the Senate inquiry into Support at Home that the algorithm uses only a small fraction of the IAT’s 622 questions, and that cognition, frailty and carer strain enter the decision so late they can lift a person by, at most, one funding level.
She called the system “fatally flawed”. Four Corners also found that more than 4,800 people died in 2024–25 waiting for funding they had already been assessed as needing.
Karlene has done her own research and reached the same conclusion. “It doesn’t rate frailty or dementia,” she said. “It looks at some of the physical issues, but not how feeble someone is, or the isolation.”
She says she has heard from others in the same position. “Honestly, people are dying,” she said. “It destroys people’s lives.”
She also worries about families she knows. A friend, she said, has given up her studies to care for her mother and is still paying rent on a unit she no longer lives in.
Karlene compares the system to Robodebt: ticked boxes, and no ending.
Karlene decided she couldn’t stay quiet. She started a petition on Change.org calling on Aged Care Minister Sam Rae to end algorithm-only decision-making in Support at Home assessments, to require every assessment to be conducted and verified by a qualified health professional, and to make the process transparent so families can understand and challenge the result.
“As a carer, my job isn’t only as a partner,” she said. “It’s to stand up for the rights of the person who needs the caring.”
The Senate has passed a bill that would restore assessors’ ability to override the tool, but the government voted it down in the lower house. Minister Rae has said the classification tools draw the data they need, and has pointed to a 40 per cent increase in aged care funding since 2022.
Karlene says her fight isn’t political. “I don’t care who’s in government. They have a duty of care to look after us. We just want to get it to parliament.”
When we spoke, the petition had 756 signatures since 18 August, more than 12,800 views and 343 shares. Every time someone signs, Karlene looks up their name so she can thank them. Telling HelloCare this, she became tearful.
“It means so much that people get help,” she said. “I just want to say thank you to everyone who’s signed.”
Karlene’s petition, End reliance on algorithms for aged care assessments, is on Change.org.
