Aged care reforms leave elderly Australians and their loved ones in the lurch

As a journalist, there's a sure-fire way to know when you've hit a nerve in Australian society. It's a media litmus test, albeit entirely unscientific.

Put simply, it's the number of emails you receive after a story is published. It's not purely the volume — it's when emails come from all over the country; it's the detail in their stories; and it's the emotion behind the words that conveys their level of anger and despair.

Based on this simplistic formula after a number of ABC stories in recent months, it appears the government's "once in a generation" reforms to aged care are having a massive impact — and in the exact opposite way to what it intended.

The reforms have unleashed a wave of confusion and despair amongst hundreds of thousands of elderly Australians, from those wanting care to those who already have it.

To understand the scale of the changes, it's worth taking a trip through the new system.

The wait for an assessment

First off — assessments.

One of the government's first reforms was to partly privatise the aged care assessment system. Late last year it awarded around $1.2 billion in contracts to replace clinicians from state and territory public health systems who had done the job for decades.

Now there are more than 116,000 people waiting to be assessed for home care. The government says the median wait time is 23 days while people in the sector and families say their personal experience is vastly different.

After a 7.30 story on the reforms, our email inbox was full, with one couple in their 70s saying they were told it would take "nine to 10 months before we could even get an assessment". Another woman wrote that, after begging My Aged Care for a reassessment of her father for eight months, "the assessor rang to make an appointment two months after my father died".

Another man in his 80s said he had just given up.

Making matters worse, people say their complaints to My Aged Care go nowhere as they are referred back to the assessment agency to try to get quicker assessments, all while they or their loved one deteriorates.

The aged care algorithm

In recent weeks there's been plenty of publicity about disability advocates' battle to stop a proposal to determine NDIS support via an algorithm. In aged care, that's already happened.

Along with the partial privatisation of assessments, there's now an algorithm — called the Integrated Assessment Tool — which decides th e level of support an elderly person receives.

A clinical assessor still visits but they're prevented from overriding the algorithm — even when they believe the outcome is plainly wrong.

One assessor told us that many of his colleagues are reporting back that the tool is routinely assigning low care levels to people with high needs, and that they are powerless to intervene.

"I am forced to sign off on decisions which I don't agree with," he said.

When people don't receive adequate care, they need to be reassessed for a higher level of funding which, once again, leads to more people on the assessment waiting list and more delays.

The home care wait list

Once you've been assessed and approved for care, you need to join another queue to actually receive it. The latest figures show there's more than 107,000 people waiting, with a standard wait time of 10 to 11 months.

Despite the government's promise to release 80,000 more home care packages by the end of the financial year, that's not going to solve the growing wait list nor assuage the anger among older Australians.

"My father was discharged from hospital waiting for a package … I have been told it might be nine months. I had to resign from my job to care for him, it's a disgrace," says one.

Another woman wrote begging for help, saying her 92-year-old neighbour, who has Alzheimer's, has been told she won't get her package "for at least 12 months".

When combined with the assessment waiting list, it means an estimated 200,000 people require home care and are not getting it.

'No worse off'

A central aim of Labor's reforms is to make aged care financially sustainable as the population ages — and that includes shifting more of the cost onto individuals.

One of its most contentious changes, introduced on November 1, requires everyone getting home or residential care to contribute to the cost.

Evidently anticipating a political backlash if it applied charges retrospectively to the 250,000 people already in the home care scheme, the government repeatedly assured families and their loved ones that their care was "grandfathered" and that they would be "no worse off".

In reality, people are seeing their hours of care drop each week while the value of their funding decreases.

That's because aged care providers have sharply increased their hourly rates — some by 30 to 40 per cent — after the government introduced a cap on what providers can charge in management fees, forcing them to hike up their rates to account for the shortfall.

At Senate Estimates earlier this month, Senator David Pocock questioned how an 84-year-old whose charge for respite climbed "from a flat $132 to $447 per hour" could not be considered to be worse off.

But Department of Health officials aren't stepping back, saying the "no worse off" commitment applies only to out-of-pocket expenses and "does not cover other things around service prices".

Despite the evident anger among our audience who say they took the government's "no worse off" promise at face value, the department insists it's been completely transparent, saying the terms had been "very well communicated" to the community through manuals, newsletters and fact sheets.

Crippling co-payments

The government says it can't sustain the budget with our aging population, which is why the "user pays" system is entirely fair, ensuring that people who can afford to contribute to care that is non-clinical, do so. While there's been a lot of emphasis on baby boomers, superannuation savings and booming property prices, even pensioners will need to pay.

People on a full pension who don't own property or have any excess funds will also need to fork out for showers, dressing, toileting, medication management as well as any assistance around cleaning their house or meals.

And because providers are charging more than ever before, some part-pensioners and self-funded retirees will pay $50 to $75 per hour for personal care like showers and help with dressing. That's enraged advocates, professionals and families who say people will forgo basic care.

One pensioner in Victoria with cancer and no savings told the ABC, "co-pay is crippling … the federal government has successfully stopped me from spending my package on services to keep me in my home".

The Inspector General of Aged Care, Natalie Siegel Brown, has warned the government that reduced care will lead to more health problems and greater hospitalisation.

That will exacerbate the growing federal-state conflict, with latest figures showing there's 3000 elderly people stuck in hospital who need a nursing home place — up 25 per cent in just three months.

Hospital overflow with elderly

Labor says it's delivered on the royal commission recommendations, reforming the system to ensure choice, fairness and dignity while ensuring sustainability.

But the royal commission never proposed shifting the cost of fundamental personal care onto older people. Crucially, it said that people should be supported to stay in their homes for as long as possible.

Under these reforms, elderly Australians are waiting longer; paying more for aged care than ever before; and getting fewer hours because of higher fees charged by providers.

If that leads to people being forced into hospitals and unable to find a place in residential care because of a dire shortage of beds, the government will have a whole new problem on its hands — and one of its own making.

Anne Connolly is an investigative reporter with ABC Investigations and is best known for her journalism on social policy including aged care, public guardians and trustees and the NDIS. Her Four Corners reports on aged care in 2018 led to a royal commission into the sector.