At 29, he’s at the start of a fight for his life.
Yet despite his doctors saying Upjohn cannot work and should minimise all stress, Centrelink has denied his application for the disability support pension, saying his condition does not meet the stringent requirements.
“When the claim was denied, I was just amazed,” says Upjohn, who was diagnosed with a grade three brain tumour in June. His condition carries a 50% survivability rate over five years, he said.
“People in this situation with serious illness and long-term illness must be getting turned away left, right and centre,” Upjohn says.
Upjohn’s case is the latest to show how strict government rules – including the requirement a condition is “fully diagnosed, treated and stabilised” – can force some of the sickest people in Australia on to the sub-poverty line jobseeker payment.
About a third of the one million people on jobseeker payments are classified as having a “partial capacity to work”, usually due to chronic illness or disability, a figure that has grown dramatically since changes to the disability pension rules beginning in 2011.
The government’s own guidelines determining access to the disability pension state that “non-terminal cancer that is still being treated by chemotherapy and for which prognosis is uncertain, would not normally be regarded as fully treated”.
This bars many cancer patients from accessing the payment unless they are terminally ill and are likely to die in two years or less.
Upjohn had been working as a commercial pilot and living with his girlfriend in their rental property in Sydney’s southern suburbs when she woke early in the morning to find him having a seizure.
He had been “jerking both arms, frothing at the mouth”, his face had gone pale and his lips were blue, according to hospital records.
Doctors discovered a growth on the left side of his head. They operated, and managed to remove what turned out to be a grade three astrocytoma. Upjohn says he was so unwell he could hardly stand post-surgery.
“We called Centrelink and said, ‘What would you advise us to do,’” Upjohn says. “They said, apply for disability payment. It should be an easy process.”
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The rejection letter, seen by Guardian Australia, came in late July. Instead, he was placed on to the $45-a-day jobseeker payment, which is $338-a-fortnight less than the disability pension.
It’s not been enough to cover his rent or bills, and he’s sold aviation gear and borrowed money from family to stay afloat.
“I’ve just finished up radiotherapy,” he says. “Half my head is bald. We’re in a transition period … Next week it’s seeing the surgeon, the oncologist, my chemotherapy oncologist, my GP and also a psychologist as well as part of the cancer care umbrella. That’s my life.
“For two or three weeks after radiotherapy, you still have a huge amount of inflammation and residual radiation,” Upjohn adds. “It’s a bit like feeling run down with the flu but you just don’t get better.
“You wake up and you can barely move. [There is] this muscle wastage feeling. Every muscle you have aches, and if you try to get in some exercise to rebuild it, you wipe yourself out for two days.”
In a fortnight, he will commence chemotherapy. It may last more than a year, with breaks, depending on his progress.
Though the tumour has been removed, doctors need to tackle the “microscopic cells left behind, and the deep roots of the growth itself”, Upjohn says.
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Upjohn hopes to get back into the workforce eventually, but he has been told he will never work as a commercial pilot again. He’s also been prohibited from driving for six months.
“The aviation medical team said we can give you a medical and your commercial licence back, but no employer will ever hire you again now you’ve had a seizure,” he says. “It’s not worth the risk for them.”
To make matters worse, Upjohn says he was not even receiving a full jobseeker payment, with Centrelink applying the partner income test due to his girlfriend’s modest income from part-time work.
His last three fortnightly payments were for $430, $409 and $432, according to payment statements seen by Guardian Australia.
Upjohn says when he complained that the money was not enough to live on, a Centrelink staff member told him his girlfriend should be helping to cover those costs.
“At some point, I must have just snapped,” Upjohn says. “I said, ‘What are you talking about? She’s not responsible for paying my medical bills, my phone bill, my rent, my food.’”
“[They said], ‘Realistically you might be better off looking at a personal loan if things get tricky,’” Upjohn adds.
Victoria Legal Aid and 26 disability groups are among the organisations calling for reforms to the disability support pension’s “fully diagnosed, treated and stabilised” rule, along with other changes.
Some advocates have called for a specific payment to support people with temporary medical conditions such as cancer, while others say the jobseeker payment should simply be lifted to the poverty line.
Janet Rice, the Greens community affairs spokesperson and chair of a Senate inquiry into the payment, says Upjohn should unquestionably be receiving the disability support pension.
“It’s clear the measure of ‘fully diagnosed, treated and stabilised’ is deeply flawed and prohibits thousands of Australians from rightfully accessing the [disability support pension],” she says.
Related: Disability pension rules leave thousands with cancer on $44 a day
Cassandra Goldie, the chief executive of the Australian Council of Social Service, says there is a “long-term deliberate government policy to deprive people with disability or chronic illness, including cancer, the disability support pension”.
A spokesperson for the social services minister, Anne Ruston, who is responsible for disability support pension policy, referred questions to Services Australia, which assesses applications.
Services Australia’s spokesperson, Hank Jongen, says the agency understands “Mr Upjohn is going through an extremely difficult time”.
“While we can’t go into the details of his case, we’d like the opportunity to get in touch with him to make sure he’s receiving all available help,” he says.
“We also have a large national network of social workers available to help people like Mr Upjohn and connect them with support services.”
Upjohn says the experience had dented his faith in the country. “It’s the first time I realised that people in a country that I was proud to be part of, would suffer needlessly, would have stress pressed on to them during the darkest days of their lives,” he says.
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