Dying Australians approved for government-funded aged care home support are struggling to access it, with carers describing a system plagued by delays and lack of control around how funding is spent.

The accounts of carers and aged care assessors spoken to by Guardian Australia show that beyond the controversial, algorithm-driven assessment process for home care funding, many are left without adequate and timely support even after funding has been approved.

Emma Nicolle was caring for her dad, Alan, in his Canberra home for several months until he died on Wednesday with cancer. She said “the negligence is staggering”.

Alan was assessed for support through the government’s Aged Care at Home system in October and was granted the highest package available, with additional funds after he was reassessed in November under new reforms.

“My dad was clearly dying, so the need was urgent and acute,” Nicolle said.

“From late October I was begging Aged Care at Home to allow me to order the mechanised bed and wheelchair Dad desperately needed, as he was developing bed sores due to the unsuitable bed and chairs he had no choice [but] to use.

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

But Nicolle was told there was a mandatory waiting period to spend any budget on certain items.

Four months after funding was approved, a mechanised bed was delivered. Nicolle’s dad died less than two weeks later.

Moving her father in and out of bed has left her with injuries. “I have herniated discs myself so this has destroyed my health and caused Dad and I intolerable pain, discomfort, grief and shame.”

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

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

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

‘Kafkaesque’

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

Under changes implemented in November, some services that were delivered to patients at their homes through the public health system by community nurses were privatised and built into Support at Home packages.

It meant fluid drainage needed to be organised by Nicolle and paid for out of her father’s package as she navigated a complex system of approvals, providers and billing arrangements.

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

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

In another instance, Nicolle said she struggled to obtain an oxygen mask for her father as his condition deteriorated, with the supplier requiring approval from the provider and the provider advising she needed to arrange it herself – and that there would be a wait of up to a week for delivery.

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“My dad cannot get any oxygen through the nasal prongs anymore as his nose is continually blocked with blood… [5 to 7] days would be a life threatening time to wait,” Nicolle wrote back.

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

“There is no one over the age of 65 who doesn’t have a Mensa and full capacity, who could do this when they are well, let alone while sick.”

‘No one tells you that option exists’

Guardian Australia has spoken to families who say they felt they had little control over, or visibility into, how their loved one’s Support at Home funding was allocated.

Kirilly Mallard found it difficult to access the care her palliative mother-in-law needed before she died on 19 February in Hawkesbury, NSW.

Emails seen by Guardian Australia show Mallard struggled to understand which organisation controlled the support package, how funds were being spent and what supports they were entitled to.

A provider who sent nurses to her mother-in-law’s home explained to Mallard the organisation “never managed any form of funding” and therefore could not provide invoices for the nursing. The provider said Access Care Network Australia (ACNA) managed all finances.

But the CEO of ACNA, Dr Ricki Smith, confirmed to Guardian Australia that ACNA does not oversee how services are delivered or how funding is used once allocated.

Mallard was also told by the nursing provider that additional hours of care would need to be paid for privately. Some support, including overnight care, was separately funded by a charity because the package did not cover it.

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

“Our provider who managed the package was a local service, and there were some nurses who came in through that provider who were angels. But for other types of support we thought we would get through the package, we had to rely on a local charity for.”

Those with a Support at Home package are supposed to be able to change providers at any time, and “your current provider must support you in the move,” the government’s My Aged Care website says. But Mallard says a case manager told her it was “not an option”.

Nicolle said she only discovered by chance that she could “self-manage” her father’s package – allowing her to choose workers and equipment directly – after speaking to dozens of organisations trying to get help.

“No one tells you that option exists,” Nicolle said.

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

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

There are few organisations that offer self-management – leading to long waiting lists.

‘How is this considered acceptable?’

One woman who lives in Victoria – and who wanted to remain anonymous so as not to jeopardise her mum’s care – said she had to fight to receive invoices from the provider holding the funds for her mum’s self-managed Support at Home package.

In early February, the provider told her she was $9k over budget, with no funds left for the quarter. Her mum, age 70, has a rapidly progressive neurodegenerative disorder.

“When speaking with the provider, I was told the emails from accounts regarding the situation went to the wrong email address,” she said.

“After requesting the invoices I have found discrepancies on what days were worked and what days had been charged. The contracted care providers were charging mum’s package for days the carers were sick and not actually working.”

Fees for personal care were increased to $112 per hour without her or her mum’s knowledge – of which the carer receives just $35.

“It has been an exhausting and complicated journey,” she said.

Penny Allman-Payne, a Greens senator, told Guardian Australia that the aged care reforms had been “created to protect the bottom lines of the providers … extracting more money from older people while denying them essential care and support”.

“I’m hearing from constituents who say they don’t know how their funds are being spent or what their balances are, that there’s no transparency in how providers are spending their money or what fees are being charged, and that the new unspent funds cap means their balances are simply evaporating,” she said.

“Not only have Labor’s laws made aged care more expensive for older people, they’ve also made the system more opaque and harder to navigate.”

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

She said clients were often approved for assistive technology or home modifications through their Support at Home package, only to be placed back on waiting lists.

“An example today was a 70-year-old man who had received funding for a bed but was then placed back on a waitlist for care supports,” she said. “He is bed-bound and cared for by his 90-year-old parents.

“How is this considered acceptable?”

A separate client, despite being assessed as needing assistive technology, was put by his provider on a 12 month waiting list. Napoli said his wife was advised to tell the government he was palliative in a bid to get access to the supports faster.

“We are basically telling our older Australians that they need to be dying to receive basic supports,” she said. “This is disappointing and concerning.”

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