It took the worst day for Lynette Penfold to get good news from Centrelink.
The 65-year-old woman 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 pretty good, but the minute I’m physically doing a lot, you can feel the fatigue coming in your body. Not to mention, ‘I can’t get bored.’ It’s just your body. You just feel tired.
“I said to my son, ‘How can I be expected to do a full-time job? There’s no way.'”
But it was only with this diagnosis that the social worker at Penfold Hospital felt he had a genuine chance of accessing the disability support pension, the primary welfare payment for the unemployed. .
While there is no general ban on cancer patients accessing childbirth, lawyers say the way the rules are written means it is almost impossible to make a successful claim.
That is, as long as the condition of a person is considered terminal – and have two years to live or less.
The main problem is that to be eligible for a disability support pension, a person’s condition must be “fully diagnosed, fully treated and fully stabilized”.
“This is a significant issue for people with cancer,” says Megan Varlow, director of cancer control policy at the Australia Cancer Council. “They can be treated for a long time and never be completely treated or stabilized. That’s the big hurdle. “
This is not a new rule and does not only affect people who are being treated or recovering from cancer.
But the Department of Social Services ’social security guidance goes out of its way to note:“ Non-terminal cancer of a person still being treated with chemotherapy and whose prognosis is uncertain, is usually not considered. as fully treated “.
Because they cannot access the disability support pension, cancer patients are directed to apply for the jobseeker’s pay.
Guardian Australia may reveal 7,566 people on pay job seekers had “partial ability to work” due to “cancer / tumor” in March.
According to a conservative analysis, that indicates at least a 40% increase in just under two years. Figures uncovered by Guardian Australia show 5,406 people with cancer in June 2019, but some were also other payments, such as a parenting payment or a youth allowance.
“We hear horrible stories of people ending up in significant financial distress as a result of their cancer diagnosis,” says Varlow.
Penfold was working as an administrative assistant at a local neighborhood home when she was diagnosed with cervical cancer. It was October 2019.
“I looked after the facilities and came out after people who wanted emergency help, vouchers, food,” she says. “So I was in a position to help others. I used to joke and say, ‘Now I can’t get any help from anyone. ‘”
The first penfold fight of chemotherapy and radiation treatment began in December 2019 and lasted until February 2020.
There were follow-up investigations during 2020.
“They did a biopsy on my throat,” Penfold says. “It was the same type of cancer. Luckily when my system started back up, it definitely fought that little cancer there – nothing seems to be there anymore. But this year it popped up on my pelvis. “
With her hospital social worker aware of the applicant’s strict rules on being “fully cared for”, Penfold did not formally apply for the disability support pension until she was terminally ill.
The request was approved in September 2020. Penfold also withdrew its superannuation.
Prior to that, she was on top of job seekers ’pay while the coronavirus supplement – which doubled support – was in place.
The supplement expired in March and there is now a $ 338-a-fortnight difference between the jobseeker and the disability pension.
Penfold says expecting people to survive on a paycheck while looking for work while battling cancer is unrealistic and cruel. “It’s unfortunate,” she says. “You’re taking chemotherapy and radiation, a lot of those people, you’re too sick.
During treatment, she was “painful, sick, upset, all of the above”. “I couldn’t sit next to the sink and make a meal,” Penfold says. “So I was sick.”
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 grow credit cards, eat into their superannuation,” she says. “If they improve, they have reduced their superannuation.”
She adds: “People will not have all their medicines made. I remember seeing a woman and they said she has such terrible nausea. Was it about anxiety? No, it was about the fact that she was not taking the medications made. “
The disability support pension application form is 33 pages and applicants are required to provide medical records and collect reports from doctors and other specialists. This also creates a problem.
“They may not be 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 has never been difficult for someone helping to get a pension.
“A lot of patients who have ovarian cancer – that’s cancer with a poor prognosis – a lot of them die within five years,” she says. “Even if they don’t die, they are treating recurrent diseases. [Ten to 15 years ago] those people I say from the very beginning, apply to [disability pension]. And they were getting … Now, nothing. “
While disability pension applicants have long needed to show that a “permanent” condition is expected to continue for more than two years, critics argue that 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 “have reduced the proportion of patients with cancers that are eligible for [disability pension]”.
Those impairment tables are due to expire next year and are being reviewed by the government.
What needs to change?
Many advocates argue that all payments should only be made to the relative poverty line, or to the Henderson poverty line. The latter would be closer to the return of benefits to last year’s enhanced Covid rate of about $ 1,100 per fortnight.
Instead of that reform, the Cancer Council Australia and Oncology Social Work Australia and New Zealand are demanding a new fee to fill the gap between jobseekers and disability support pensions.
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 has served as a member of the administrative appeals tribunal for four decades.
One of the AAT’s jobs is to review Centrelink’s decisions, and Carney says it was frustrating to deny people a pension – including cancer patients – because of the way the rules are written.
“It has become progressively more difficult for all sorts of people but in particular the types of conditions that come with a cancer diagnosis,” he says.
More than 20 organizations, including People With Disability Australia and Victoria Legal Aid, have also called for the government to remove “the requirement that a condition be fully diagnosed, treated and stabilized”.
“Decision-makers obsess over the term‘ completely treated ’,” says Darren O’Donovan, an academic of academic law at La Trobe University.
“They ask shortcut questions like,‘ Did you do this, this and this? Is the treatment continuing? ’Is the outcome uncertain?‘ People receive ‘see how it goes’, not the support they need to focus on the -recovery. “
Government data show that there were 17,369 people on the disability pension whose primary condition was listed as “cancer / tumor” but most likely to be terminal, such as Penfold.
A spokeswoman for social services minister Anne Ruston says the government “understands that cancer affects many Australians and has a huge impact on individuals, families and the community”.