Mon. Aug 15th, 2022

It took the worst 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 that she had two years to live.

“You can imagine the shock,” she says. “Even now I feel pretty good, but the moment I physically do a lot, you can feel the fatigue coming to your body. It has nothing to do with, ‘I can not be bothered.’ It’s just your body. You just feel tired.

I said to my son, ‘How could I be expected to do a full-time job? There is no way. ‘”

Yet it was only with this diagnosis that Penfold’s hospital counselor felt she had a real chance of accessing the disability pension, the primary welfare payment for those unable to work.

Lynette Penfold
Penfold: ‘You can feel the fatigue coming to your body.’ Photo: Carly Earl / The Guardian

Although there is no general ban on cancer patients gaining access to the payment, lawyers say the rules are written, meaning it is 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 central problem is that in order to be entitled to an invalidity pension, a person’s condition must be “fully diagnosed, fully treated and fully stabilized”.

“It’s a major problem for people with cancer,” said Megan Varlow, Director of Cancer Control at Cancer Council Australia. “They can be treated for a long time and never completely treated or stabilized. That is the great obstacle. ”

This is not a new rule and it does not only affect people who are being treated for or are recovering from cancer.

But the Ministry of Social Affairs’ guidance on social security goes out of its way to note: “A person’s non-terminal cancer who is still being treated with chemotherapy and whose prognosis is uncertain would not normally be considered fully treated”.

Cancer patients cannot access the disability pension, and are therefore required to apply for the job-seeking payment.

Guardian Australia can reveal that 7,566 people on the job search pay had a “partial work capacity” due to “cancer / tumor” in March.

According to a conservative analysis, this indicates an increase of at least 40% in just under two years. Figures discovered by Guardian Australia show 5,406 cancer patients in June 2019, but some were also other payments, e.g. Parental payment or youth benefit.

“We hear horrific stories about people ending up in significant financial distress as a result of their cancer diagnosis,” Varlow says.

Lynette’s story

Penfold was working as an administrative assistant in a local neighborhood house when she was diagnosed with cervical cancer. It was October 2019.

“I looked after the facilities and I looked after people who went in and wanted relief, vouchers, food,” she says. “So I was able to help others. I used to joke and say, ‘Now I can’t get help from anyone.’ ”

Penfold’s first battle for chemotherapy and radiation therapy started in December 2019 and lasted until February 2020.

There were follow-up studies throughout 2020.

“They did a biopsy on my neck,” Penfold says. “It was the same cancer. Fortunately, when my system crashed, it must have fought the little cancer there – it is no longer visible at all. But it showed up on my pelvis this year. ”

When her social worker at the hospital knew the strict rules that plaintiffs were “fully treated,” Penfold did not formally apply for disability pension until she was terminal.

The claim was approved in September 2020. Penfold also withdrew her early retirement pay.

Before then, she was on the job-seeking payment while the coronavirus supplement – which doubled the support – was in place.

Lynette Penfold fills her kettle
Penfold fills her kettle. ‘I could not stand by the sink and make a meal,’ she says. ‘That’s how I was sick.’ Photo: Carly Earl / The Guardian

The supplement expired in March, and there is now a $ 338 gap in 14 weeks between job seekers and early retirement.

Penfold says it is unrealistic and cruel to expect people to survive on a job-seeking paycheck while battling cancer. “It’s miserable,” she says. “You get chemotherapy and radiation, most of them are 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 I was sick.”

The view from a cancer ward

Kim Hobbs is a social worker at a hospital in Sydney who has seen cancer patients slip from their diagnosis, to unemployment benefits, to poverty.

“They maximize the credit cards they eat in their lifetime,” she says. “If they get better, they’ve exhausted their lifespan.”

She adds: “People will not get all their medicine made. I remember I saw a woman and they said she had such terrible nausea. Was it about anxiety? No, it was about her not getting the medicine made. ”

The disability support pension application form is 33 pages, and applicants must submit medical records and collect reports from doctors and other specialists. It also poses a problem.

“They may not be close to home and do 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 harder for anyone she helps retire.

Chemotherapy is administered
‘Cancer that is still being treated with chemotherapy and for which the prognosis is uncertain would not normally be considered fully treated,’ says the Ministry of Social Affairs Photo: Alamy

“Many patients who have ovarian cancer – it’s a bad prognosis – most will die within five years,” she says. “Even though they are not dead, they are dealing with recurrent illness. [Ten to 15 years ago] the people I want to say right from the start, apply for [disability pension]. And they would get it … Now, not at all. ”

While early retirement applicants have long needed to prove a “permanent” condition that 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 claims that “the tables with impaired function” – which are used to assess the severity of a person’s condition – introduced in 2011 “reduced the proportion of cancer patients who are eligible for [disability pension]”.

These impairment tables expire next year and are under revision by the government.

What needs to change?

Many advocates argue that all payments should just be raised to the relative poverty line or the Henderson poverty line. The latter would be closer to repaying benefits at last year’s covid-boosted rate of about $ 1,100 every fortnight.

Instead 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 job seekers and disability pensions.

It would be similar to the old sickness benefit, but paid out after the disability pension.

Several groups, including Anglicare, support a similar idea.

School ties won by Penfold's grandchildren
School ties won by Penfold’s grandchildren. Photo: Carly Earl / The Guardian

“I think these proposals are on the money,” says Terry Carney, who served as a member of the Administrative Appeals Board for four decades.

One of AAT’s jobs is to review Centrelink decisions, and Carney says it was frustrating to deny pensions to people – including cancer patients – because of the way the rules are written.

“It has gradually become more difficult for all kinds of people, but especially the kind 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 on the government to remove “the requirement that a condition be fully diagnosed, treated and stabilized”.

“Decision makers are obsessed with the term ‘fully treated,'” said Darren O’Donovan, an academic in administrative law at La Trobe University.

“They ask shortcut questions like, ‘Did you do this, this and this? Does the treatment continue? ‘Is not the result uncertain? ‘People receive a’ see how you go ‘, not the support they need to focus on recovery. “

Government data show that there were 17,369 people on early retirement, whose primary condition was listed as “cancer / tumor”, but it is likely that most would be terminal, like Penfold.

A spokeswoman for the Minister of Social Affairs, Anne Ruston, says the government “understands that cancer affects many Australians and has a major impact on individuals, families and society”.