Aged care waitlists claim lives as system fails

Deidre de Jonge was preparing to lay her husband Gerrit to rest when she received a long-awaited phone call: the $4,500 taxpayer-funded lift chair he desperately needed had finally arrived – two weeks after his passing at their Townsville home.

The chair, intended to help Gerrit de Jonge stand and recline without muscle pain, now sits in the living room as a poignant reminder of Ms de Jonge's protracted battle for federal government funding to support her husband in his final weeks and months at home.

"I absolutely hated it. I hated the chair because it arrived too late," she said.

"The only reason I've still got it is because my husband said we fought hard for it."

About 130 kilometres west of Ms de Jonge's home, Daryll Mulgrue has finished decorating a bookshelf with framed photos to remember her partner Geoff Small, who died months before they were due to receive funding for his care at home.

The aged care department has previously defended the care package arrangement, citing falling wait times. However, advocates argue that stories like those of Mr Small and Mr de Jonge are not uncommon in a system that is in need of reform.

As of June 30 this year, there were 107,000 people waiting for the federal government's home aged-care program Support at Home, not including those receiving funding while they wait – a figure of 53,000 people as of March.

Some individuals appearing at a senate inquiry into the program are expected to describe a system that is failing and in need of reform.

Waiting for a chair

Ms de Jonge first applied for My Aged Care funding for her husband in October 2024, after learning his oesophageal cancer was terminal. About 15 months later, in January this year, the former mine worker was given less than three months to live and still had not received a cent in funding.

"His feet were so swollen that he could hardly walk," Ms de Jonge said.

"He used a walking stick around the house all the time, but he couldn't in those days."

Gerrit de Jonge was approved for the End of Life Pathway, which meant up to $2,000 for assistive technology and up to $25,000 for approved services for 12 weeks. The couple was able to hire a lift chair with the $2,000, but Mr de Jonge lived longer than the 12 weeks, and the funding for the chair soon ran out.

Ms de Jonge complained to My Aged Care in May, and soon the couple was approved for their original Support at Home package and the purchase of a new chair. Mr de Jonge died by voluntary euthanasia in late June.

When help never comes

Ms Mulgrue was the full-time carer for partner Geoff Small as his health deteriorated over the final 10 years of his life. As she cared for him at their home on the outskirts of Charters Towers, she herself was going through chemotherapy for leukaemia.

"My life stopped and everything was for Geoff," she said.

"I was exhausted, absolutely exhausted."

In January, Mr Small was approved for complex care Support at Home funding and told the wait time was 12 months. He died six months later at Charters Towers Hospital, without ever receiving his funding or support workers to help with daily tasks.

"It was horrible," she said.

"If I had some help, I perhaps wouldn't have been so exhausted."

More than 4,800 people died in 2024–25 while waiting for their approved home care funding. The most recent federal aged care department data shows an average wait of about 10 months to access a Support at Home package.

'People would be horrified'

The Older Persons Advocacy Network (OPAN) submission to a Senate inquiry into the program said temporary extra funding should be available to older people on the waiting lists.

"The system is still very broken," Geoff Rowe, chief executive of Aged and Disability Advocacy Australia, said.

"If the general public were more aware about how broken the system is then they would be outraged. People would be horrified."

"At the moment we see a system that is unable to deliver those necessary items of equipment in a timely manner," he said.

Aged Care Minister Sam Rae did not provide a response before publication.