Australia’s broken aged care home support system is ensuring that loved ones live and die without dignity | Aged care

Dying Australians approved for government-funded aged care support are struggling to access it; Carers describe a system plagued by delays and a lack of control over how funding is spent.

Testimonials from carers and aged care assessors interviewed by Guardian Australia show that beyond the controversial, algorithm-based assessment process for home care funding, many people are left without adequate and timely support even after funding has been approved.

Emma Nicolle cared for her father Alan at his home in Canberra for several months until he died of cancer on Wednesday. “The negligence is enormous,” he said.

The area was assessed for support through the government’s Home Aged Care scheme in October and was awarded the highest package available, with additional funding, after being reassessed under new reforms in November.

“My father was clearly dying, so the need was urgent and dire,” Nicolle said.

“From late October I was begging Home Aged Care to let me order the mechanized bed and wheelchair my father desperately needed, as he was starting to get bedsores from the unsuitable beds and chairs for which he had no choice. [but] to use.

“He couldn’t shower without the bathroom being renovated, and getting him in and out of bed, into and out of the toilet, and into the car for hospital trips was exhausting, painful, and inhumane for both of us.”

However, Nicolle was told that there was a mandatory waiting period before the budget could be spent on certain items.

Four months after funding was approved, a mechanized bed was delivered. Alan died less than two weeks later.

Getting his father in and out of bed hurt him. “I also have a herniated disc, which has damaged my health and caused excruciating pain, discomfort, grief and embarrassment for my father and me.”

He said neither his provider nor the government could explain why approvals for essential equipment were delayed.

“They had no idea why their computer system was blocking the request,” he said.

“Their only advice was to call an advocacy group.”

‘Kafkaesque’

The confusion extended to who was responsible for providing clinical care to his father after he was discharged from hospital and required regular drainage of fluid from his lungs.

Under changes implemented in November, some services provided by community nurses to patients in their homes through the public healthcare system have been privatized and included in Home Support packages.

This meant that fluid drainage had to be organized by Nicolle and paid for from her father’s pack while navigating a complex system of approvals, providers and billing arrangements.

Community nurses who had an established relationship with her father were no longer his carers, and Nicolle said she struggled to find a registered nurse who also had skills in pleural drainage.

Under the Home Support system, once an assessment is conducted and funding is approved, families choose from a list of providers, many of whom are private companies, who manage funds and coordinate services such as care, cleaning and equipment.

In another example, Nicolle said she was having trouble getting an oxygen mask because her father’s condition was deteriorating, but the supplier asked for confirmation from the provider and advised that she would have to arrange it herself, and there would be a wait of up to a week for delivery.

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“Since my father’s nose is constantly blocked with blood, he can no longer get oxygen from his nose tips… [5 to 7] Waiting days would have been life-threatening, Nicolle wrote.

He described navigating the system as a “full-time job,” a “minefield,” and “Kafkaesque.”

“There is no one over the age of 65 who does not have Mensa and full capacity who can do this even when they are well, let alone when they are sick.”

‘Nobody told you this option existed’

Guardian Australia spoke to families who say they have little control or no visibility over how their loved ones’ Home Support funding is allocated.

Kirilly Mallard had difficulty accessing the care her mother-in-law needed as she received palliative treatment before she died in the Hawkesbury on February 19, N.S.W.

Emails seen by Guardian Australia show Mallard struggled to understand which organization controlled the support package, how the funds were spent and what support he was entitled to.

One provider who sent nurses to her mother-in-law’s home explained to Mallard that the organization “never provided any funding” and therefore could not bill for nursing. The provider said Access Care Network Australia (ACNA) manages all funding.

However, ACNA CEO Dr. Ricki Smith confirmed to Guardian Australia that ACNA does not oversee how services are delivered or how funds are used once allocated.

The nurse also told Mallard that additional care hours would have to be paid for privately. Some support, including night care, was funded separately by a charity as it was not included in the package.

“I was thinking, ‘I don’t know where this money is going,'” Mallard said.

“Our provider who ran the package was a local service and we had some angelic nurses coming through that provider. But we had to rely on a local charity for other types of support that we thought the package could handle.”

Those with a Home Support package need to be able to change providers at any time, and the government has said “your current provider needs to support you on the go”. My Aged Care website he says. But Mallard says a case manager told him that “wasn’t an option.”

Nicolle said she only discovered by chance that her father was able to “self-manage” his package (allowing him to directly select workers and equipment) after speaking to dozens of organizations trying to get help.

“Nobody told you that option existed,” Nicolle said.

“The system is set up for you to hand over your funds to a provider and hope they spend them well.”

However, self-managed funds still require families to use an approved provider to hold funds and ensure compliance; so that only approved and accredited employees and suppliers are used by families.

There are few organizations that offer self-management, leading to long waiting lists.

‘How is this considered acceptable?’

A woman from Victoria, who asked to remain anonymous to avoid jeopardizing her mother’s care, said she had to fight to get a bill from the provider who held the funds for her mother’s self-managed Home Support package.

In early February, the provider told him he was $9,000 over budget and had no funds left for the quarter. Her 70-year-old mother has a rapidly progressive neurodegenerative disorder.

“When I spoke to the provider, I was told that emails from accounts regarding the situation were going to the wrong email address,” he said.

“After requesting the invoices, I found inconsistencies in what days were worked and what days I was paid. Contracted care providers were charging my mother’s package for days when caregivers were sick and not actually working.”

Without her or her mother’s knowledge, her personal care fees were increased to $112 per hour, only $35 of what the caregiver received.

“It was a tiring and complicated journey,” he said.

Greens senator Penny Allman-Payne told Guardian Australia that aged care reforms were “created to protect the profitability of providers… taking more money from older people while denying them essential care and support”.

“I’m hearing from constituents saying they don’t know how their funds are being spent or what their balance is, that there’s no transparency about how providers spend their money or what fees are being charged, and that the new unspent funds cap means their balance has evaporated,” he said.

“Labor laws have not only made elder care more expensive for seniors, they have also made the system more opaque and difficult to understand.”

Richelle Napoli, CEO of Generation Care, said carers are having to game the system to get their clients the support they need. Her organization provides allied health professionals to older Australians living in the community.

She said clients are often approved for assistive technology or home modifications through the Home Support package, only to be put back on waiting lists.

“An example today was a 70-year-old man who received funding for a bed but was then put back on the waiting list for care supports,” he said. “He is bedridden and cared for by his 90-year-old parents.

“How is this considered acceptable?”

A separate customer who was assessed as needing assistive technology was placed on a 12-month waiting list by his provider. Napoli said his wife was advised to tell the government that she was receiving palliative treatment so that she could access supports more quickly.

“We’re basically telling our older Australians that they have to die to get basic support,” he said. “This is disappointing and concerning.”

Do you know more? melissa.davey@theguardian.com