Australians living with chronic illnesses are often forced to rely on Newstart payments to survive. The likelihood is most of these people will have conditions for the remainder of their lives. Yet they are ineligible for the Disability Support Pension (DSP).

For North Adelaide-based freelance writer Nijole Naujokas, living with endometriosis and arthritis means she could be struck down with debilitating symptoms at any time.

“About a month ago I had one episode where I was lying on the bed. I just had to keep very, very still. I knew that my pain killers where just out of arms reach, but I couldn’t reach them… I had to force myself. It took a good 15 minutes. I had to tell myself: just get up and get them. But I couldn’t,” said Naujokas.

Like many Australians living with a chronic illness on Newstart, Naujokas must reapply for medical exemptions every 13 weeks, or undergo an employment services assessment, to reduce her reporting obligations.

The exemption allows Naujokas to receive her Newstart allowance without looking for work or undertaking the activities laid out in her job plan. But, despite Naujokas’s conditions, there are no guarantees she will receive an exemption.

In order to be eligible, the 35-year-old’s general practitioner must fill out a form stating the condition is either temporary or the exacerbation of an existing condition. Whatever the reason, it cannot be the same reason they have previously provided or the person will have their medical exemption rejected.

“If you think about that in a workplace, can you imagine a workplace saying: you’ve got a doctor’s certificate, but we’re not going to give you sick leave because you’ve already had this condition twice before during the year?” said Naujokas.

“It sort of treats you like you’re not a person.

“I find it outrageous that people bring in doctor’s letters and they are completely ignored by someone in an administration role who has no expertise or experience.”

According to the National Social Security Rights Network, if a person’s condition is expected to last for two years or more they should apply for the DSP.

But, to be eligible for the pension, a condition must be “treated and stabilised” within the last two years.

Naujokas, who was diagnosed with endometriosis two years ago, said this requirement makes it near impossible for people with chronic illnesses to get the payment.

“Something like a chronic illness, where you have ups and downs, it’s almost impossible for it to be stable. It’s never a stable condition, and they sort of misinterpret that wilfully, from what I understand,” said Naujokas.

Although Naujokas is currently covered by a medical exemption, she is well aware of the burden of having the certificate rejected.

“Having it rejected was one of the most stressful times.

“I felt demoralised…It’s very difficult to describe the feeling when you are so unwell and then Centrelink basically says no you’re not.”

And Naujokas is not alone.

South Australian Council of Social Services (SACOSS) CEO Ross Womersley said while the number of people caught between Newstart and the DSP is unknown, Naujokas’s story is one he hears often.

Womersley is one of a growing number of people across the country calling on the Federal Government to raise the rate of Newstart, Youth Allowance and related payments by $75 per week.

A single person, with no children, living on Newstart may be eligible for up to $277.85 per week. If that person pays rent, they may be eligible for up to an additional $68.60 per week.

Womersley said a key issue with the welfare payment is that people with chronic illnesses, and disability more broadly, can’t afford the medical treatment to help them maintain good health.

“There’s a wide body of evidence that identifies those living with chronic illness or on low income simply don’t have the same access to health care that the majority of the population do,” said Womersley.

“Relatively short-term health problems can compound over time… and create a spiral of ill health.”

One woman, who spoke with InDaily on the condition of anonymity, said financial stress had forced her to consider participating in clinical trials at Flinders University in hopes of reducing the cost of her medication.

The woman, who is in her 50s, lives with chronic depression and has arthritis in her spine and ankles, making it difficult for her to work.

Although she has maintained casual employment for the past decade, she is required to attend meetings with a disability employment services provider to try and gain permanent employment.

On one occasion in 2014, the woman was experiencing a depressive episode when she attended a meeting.

She told InDaily that during the meeting she got into an argument with her case manager about her obligations and left. She said she filed a complaint against her case manager straight away but was not told she had to attend another meeting within 48 hours or her payments would be cut. Her payment was cancelled as a result.

She said the financial stress this placed on her left her suicidal.

“It’s such a scary thing. And I’ve gone into Centrelink to try and sort it out and there’s no help there. It’s like get on the telephone and it’s just like to-ing and fro-ing. They don’t accept responsibility. You’ve got to go back to the job agency and they say, no you have to go back to Centrelink because you’ve been breached.”

Advocacy coordinator for the Anti-Poverty Network Kym Mercer deals with Centrelink on behalf of her 25-year-old son. He has been diagnosed with clinical depression and every three months he reapplies for a looking-for-work exception.

“He falls in that category where he’s not sick enough to get the DSP but not healthy enough for Newstart,” she said.

“It makes him worse, having to get a new exemption every three months… Getting lovely letters from Centrelink to say: we’ve determined your condition is no longer temporary and is permanent and you’re no longer eligible to get an exemption, because exemptions are for temporary conditions only.

“So, you need to look for work even though we recognise that you can’t look for work.”

She said although there are a number of great advocates fighting for improvements to the welfare system both for people with chronic illnesses as well as more broadly, she would like to see more action from Federal Government.

“It’s like anything, you can lead a horse to water but you can’t make it drink. You can give them all the evidence in the world, but unless they are willing to take a really good hard look at it, then it’s not going to make a difference.”

A spokesperson for the Labor social services minister Linda Burney told InDaily that Newstart and associated payments require “a proper review…to identify what parts of the system need to change and how to pay for it.”

“The review will focus on how Newstart can best alleviate poverty, but also return to the workforce,” the spokesperson said.

InDaily contacted the office for the minister of families and social services Paul Fletcher for comment on this story, including raising the rate of Newstart, but we have not received a response.