Karlene’s partner needs physio to walk, but an algorithm cut their care

Sydney woman Karlene McCabe’s partner suffers from a debilitating brain tumour. So when the couple received word last November that the government’s new automated aged care assessor had deemed them unqualified for crucial support, they were devastated.

But after launching a petition to call for change, they soon realised they were far from alone.

Karlene, 69, said her 78-year-old partner received the life-changing diagnosis two years ago.

Under the previous aged care assessment system, they had been rated on the third of four tiers, but when the government’s Support At Home Integrated Assessment Tool was activated in late 2025, they were relegated to the third of eight tiers, left with what Karlene said was “a fraction of the support”.

“On a $900-a-fortnight pension, once the bills, rates, petrol and health insurance are paid, there’s nothing left to cover the gap,” she said.

Her partner requires physiotherapy twice a week to retain their ability to walk and stand upright, but even then mobility aids are required.

They also require daily insulin shots and round-the-clock care in case of falls, as well as assistance eating, bathing, and showering.

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The couple spent about $100,000 remodelling their home for better accessibility, and the loss of coverage after the new assessment left them shattered.

“Devastated. Absolutely devastated,” Karlene said.

Initially, they weren’t even aware the decision had been made without human input, but by an automated assessor. Karlene said they were left stunned by the revelation.

Frustrated, Karlene launched a petition on Change calling for human beings to be put back in charge of the assessment process.

It’s since gathered more than 10,000 signatures, including at least 45 just in the time she spoke with nine.com.au.

Karlene said many people had come forward to thank her for speaking out and shared their own stories of “inhumane” treatment under the new system.

“People that need this care are being discriminated against,” she said.

“It’s not just us, there are so many people out there, real people.“

She said one woman had told her that while waiting for a reassessment, her husband had died and she had undergone an amputation.

“If we don’t have somebody speaking for us who has power, then there’s no power to make changes,” she said.

Karlene’s partner has also had a reassessment - this time involving an in-person visit by a retired nurse.

As a result, they have been shifted to a much higher tier of coverage, but the couple are still stuck waiting months for funds to be released, as well as for approvals and delivery of aids such as a door ramp, bed rail, and shower chair.

“As far as I know they’ve been OK’d, but I don’t know how long we’ll be waiting,” Karlene said.

One of the hardest things her partner has had to do is give up their involvement in maintaining their beloved permaculture garden, which Karlene said had been their passion prior to the diagnosis.

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The mowing and cleaning of the garden is another expense they’ve had to pay out of their own pocket.

The response to her petition, including not just stories from other everyday Aussies in the same trenches, but offers of help and support, has helped her focus.

“The petition gives me the courage to keep going,” she said.

Review announced into system

On Thursday, the government announced an independent Review into the Support At Home program, “in particular about how the Integrated Assessment Tool works”.

In a release, the government admitted that the feedback showed “the assessment systems are not always getting it right”.

“The reviewer will be empowered to recommend what changes, if any, are needed to the assessment mechanisms to ensure they appropriately allocate care based on an older person’s circumstances and priority, while maintaining sustainability in the broader aged care system,” the government said.

“To ground the review in clinical expertise, an expert advisory group will also be convened, bringing together experts in gerontology and assessment.“

The report will be delivered to parliament in the first half of 2027.

“From January 2027, older people in exceptional circumstances will be able to access a new option for case review – with the Health Department able to change Support at Home classification and priority levels where needed,” the release said.

“The government previously commissioned a rapid review of the prioritisation algorithm, focused on identifying immediate adjustments to the way priority is assessed. This review will build on that work by looking at the underlying structure of the assessment mechanism.“

The Older Persons Advocacy Network said the review was a necessary step.

“OPAN has continued to hear from older people, families and advocates about instances where older people’s care needs were not being accurately reflected through the tool, resulting in delays accessing the right care and lengthy reassessment processes,” chief executive Craig Gear said.

“We’re pleased that the government and Coalition have come together to deliver these important changes for older people.“

Earlier this year, the Senate passed a bill that would have allowed human assessors to override the algorithm, but it was blocked in the lower house.

“I think it is clear the Minister is failing older Australians and families who deserve a much higher standard of care,” Independent Senator David Pocock said.

Independent MP Monique Ryan compared the assessment tool to the care version of Robodebt.

“We need legislated standards of transparency and clarity about how computer algorithms are developed, tested, and used in government social services,” she said.

“Whilst these are being developed and legislated, the Integrated Assessment Tool for age care services must be put on hold.”