It took the worst of days for Lynette Penfold to get some good news from Centrelink.
The 65-year-old was told last year that her cancer had spread and she had two years to live.
“You can imagine the shock,” she says. “Even now, I feel quite well, but the minute I’m physically doing a lot, you can feel the tiredness coming to your body. It’s nothing to do with, ‘I can’t be bothered.’ It’s just your body. You just feel weary.
“I said to my son, ‘How could I be expected to do a full-time job? There’s no way.’”
Yet it was only with this diagnosis that Penfold’s hospital social worker felt she had a genuine chance of accessing the disability support pension, the primary welfare payment for those unable to work.
While there’s no blanket ban on cancer patients accessing the payment, advocates say the way the rules are written means it’s almost impossible to make a successful claim.
That is, until a person’s condition is considered terminal – and they have two years to live or less.
The key problem is that to be eligible for the disability support pension, a person’s condition must be “fully diagnosed, fully treated and fully stabilised”.
“That is a significant issue for people with cancer,” says Megan Varlow, the director of cancer control policy at Cancer Council Australia. “They can be treated for a long time and never completely treated or stabilised. That’s the big hurdle.”
This is not a new rule and it does not just impact people being treated for or recovering from cancer.
But the Department of Social Services’ social security guide goes out of its way to note: “A person’s non-terminal cancer that is still being treated by chemotherapy and for which prognosis is uncertain, would not normally be regarded as fully treated”.
Unable to access the disability support pension, cancer patients are directed to apply for the jobseeker payment.
Guardian Australia can reveal 7,566 people on the jobseeker payment had a “partial capacity to work” due to “cancer/tumour” in March.
According to a conservative analysis, that points to at least a 40% increase in just under two years. Figures unearthed by Guardian Australia show 5,406 people with cancer in June 2019, but some were also other payments, such as parenting payment or youth allowance.
“We hear awful stories of people who end up in significant financial distress as a result of their cancer diagnosis,” Varlow says.
Lynette’s story
Penfold was working as an administrative assistant at a local neighbourhood house when she was diagnosed with cervical cancer. It was October 2019.
“I looked after the facilities and I looked after people that walked in wanting emergency relief, vouchers, food,” she says. “So I was in a position of helping others. I used to joke and say, ‘Now I can’t get any help from anyone.’”
Penfold’s first bout of chemotherapy and radiation treatment started in December 2019 and lasted until February 2020.
There were follow-up investigations throughout 2020.
“They did a biopsy on my throat,” Penfold says. “It was the same type of cancer. Luckily when my system kicked back in, it must have fought that small cancer there – it’s no longer visible at all. But it popped up on my pelvis this year.”
With her hospital social worker knowing the strict rules around claimants being “fully treated”, Penfold didn’t formally apply for the disability support pension until she was terminal.
The claim was approved in September 2020. Penfold also withdrew her superannuation.
Before that, she was on the jobseeker payment while the coronavirus supplement – which doubled support – was in place.
The supplement expired in March and there’s now a $338-a-fortnight gap between jobseeker and the disability pension.
Penfold says expecting people to survive on a jobseeker payment while they are battling cancer is unrealistic and cruel. “It’s lousy,” she says. “You’re having chemotherapy and radiation, most of those people, you’re too sick.
During treatment, she was “in pain, sick, nauseous, all of the above”. “I couldn’t stand at the sink and make a meal,” Penfold says. “That’s how sick I was.”
The view from a cancer ward
Kim Hobbs is a social worker at a Sydney hospital who has seen cancer patients slide from their diagnosis, to unemployment benefits, to poverty.
“They max out credit cards, they eat into their superannuation,” she says. “If they do get better, they’ve depleted their superannuation.”
She adds: “People will not have all of their medications made up. I remember seeing a woman and they said she’s got such terrible nausea. Was it about anxiety? No, it was about the fact she wasn’t getting the medications made up.”
The disability support pension application form is 33 pages and applicants are required to provide medical records and gather reports from doctors and other specialists. That also poses a problem.
“They might be not close to home and not have access to the documents they need,” Hobbs says.
Hobbs, who has been a social worker for four decades, says it’s never been harder for someone she’s helping to get the pension.
“A lot of patients who have ovarian cancer – that’s a poor prognosis cancer – most of them will die within five years,” she says. “Even if they haven’t died, they’re dealing with recurrent disease. [Ten to 15 years ago] those people I would say right from the outset, apply for the [disability pension]. And they’d get it … Now, not at all.”
While disability pension applicants have long needed to prove a “permanent” condition expected to continue for more than two years, critics argue changes introduced over the past decade have made things worse.
In particular, the Cancer Council argues that the “impairment tables” – which are used to judge the severity of a person’s condition – introduced in 2011 “decreased the proportion of cancer patients who are eligible for the [disability pension]”.
Those impairment tables are due to expire next year and are under review by the government.
What needs to change?
Many advocates argue that all payments should just be lifted to the relative poverty line, or the Henderson poverty line. The latter would be closer to returning benefits to last year’s Covid-boosted rate of about $1,100 a fortnight.
In lieu of that reform, the Cancer Council Australia and Oncology Social Work Australia and New Zealand are calling for a new payment to fill the gap between jobseeker and the disability support pension.
It would be similar to the old sickness allowance but paid at the rate of the disability support pension.
Several groups, including Anglicare, support a similar idea.
“I think those suggestions are on the money,” says Terry Carney, who served as a member of the administrative appeals tribunal for four decades.
One of the AAT’s jobs is to review Centrelink decisions, and Carney says it was frustrating to deny the pension to people – including cancer patients – because of the way the rules are written.
“It has become progressively more difficult for all sorts of people but particularly the sorts of conditions that come with a cancer diagnosis,” he says.
More than 20 organisations, including People With Disability Australia and Victoria Legal Aid, have also called for the government to remove “the requirement for a condition to be fully diagnosed, treated and stabilised”.
“Decision makers obsess over the term ‘fully treated’,” says Darren O’Donovan, an administrative law academic at La Trobe University.
“They ask shortcut questions like, ‘Did you do this, this and this? Is treatment continuing?’ Isn’t the outcome uncertain?’ People receive a ‘see how you go’, not the support they need to focus on recovery.”
Government data does show there were 17,369 people on the disability pension whose primary condition was listed as “cancer/tumour” but it’s likely most would be terminal, like Penfold.
A spokesperson for the social services minister, Anne Ruston, says the government “understands cancer affects many Australians and has a major impact on individuals, families and the community”.
“That’s why we fund cancer research, run programs to prevent, detect cancer early, treat cancer and support people through their cancer treatment,” she says.
The spokesperson also points to “free or cheaper cancer treatment and medicines under Medicare and the Pharmaceutical Benefits Scheme”.
“Australia’s social security system can support people who are unable to work during their cancer treatment including through the jobseeker payment,” she says.
“Those undergoing treatment also receive a pensioner concession card, telephone allowance and pharmaceutical allowance to help reduce out-of-pocket costs as well as an exemption from mutual obligation requirements.”
Prof Christine Paul, the head of research at the University of Newcastle’s school of medicine and public health, says there are significant and often “unpredictable” out-of-pocket costs associated with cancer treatment.
The problem is often worse for people in regional areas, who can face accommodation costs during treatment.
Paul interviewed hundreds of cancer patients before the pandemic hit as part of her research, including those rejected from the disability pension because their conditions were not considered permanent.
Left on unemployment benefits, Paul says patients told her “that amount of money … was insufficient for survival or made their lives very difficult”.
“That experience of a cancer diagnosis carries a mental health toll anyway,” she says. “That additional difficulty with navigating the system and not being believed, exacerbated their health problems. It was kind of like a double blow.”
Penfold was alone in Sydney while undergoing treatment but she has since moved in with her son in Port Stephens, in regional New South Wales.
Though it’s too late for her, she wants future cancer patients to be treated better by the government. “Now I’m just shitty about it all,” she says. “I’m past the upset.
“People need to be able to get a letter from the specialist and take it to Centrelink. That should be good enough.”
Do you have a story? luke.henriques-gomes@theguardian.com
