Almost one-in-five Australians are living with a disability. Those with a mental health condition make up the largest group on welfare

Living on the disability pension: 'It's like the slow dimming of the light'

When Amethyst DeWilde had a stable job in the public service, she kept a wardrobe full of power suits. Though she was time poor, she was money rich. Everything she wore matched. If she didn’t feel like cooking, she could always eat out. She had a favourite restaurant.

Then in 2003 she quit her job after she stood up for another person in her workplace who was struggling with their own mental health. A year later DeWilde was formally diagnosed with bipolar disorder and made an application for the Disability Support Pension.

“When you have a mental health condition, you can be great, and you have good days, but the stress involved in day-to-day situations, it can push you over the edge,” she says.

Ever since, the DSP has been her life and after housing costs, she has $331.20 a week – a figure which the Australian Council of Social Services says sits below the poverty line of $352.29 a week.

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Almost one-in-five Australians are living with a disability. DeWilde is one of around 750,000 people currently receiving the DSP.

The vast majority have been on the payment for longer than 10 years. Those living with a mental health condition, 257,828 people, made up the largest group on the DSP. The next largest were those living with a physical disability and “other” conditions not easily grouped.

Over the last decade the system has evolved in a scattergun fashion since the Gillard government changed how applications are assessed to refocus the system away from a persons’ medical condition and made it about their capacity to work.

Dr Yvette Maker from the Melbourne Social Equity Institution who specialises in disability and human rights law says that since 2012, the number of successful applications have been driven down as the criteria for eligibility has grown increasingly complex.

“We’ve seen more and higher hurdles for applicants to get over to qualify for the DSP in the last decade plus,” Maker says. “Reform by parties on both sides has created a lot of variation, depending on when you went onto the payment, as different criteria apply to you.”

While 63% of applicants were successful in 2002 – around the time DeWilde applied – that number had fallen by 2017 to 43%. Last year 103,005 people applied for the payment but just one-in-three – or 30,729 applications – made it through.

Those who aren’t successful end up on Newstart.

Data from the Department of Social Services records 199,907 people on the Newstart payment as having “partial capacity to work”. Matthew Bowden, co-chief executive of People with Disability Australia, says this is code for people living with a disability or other illness.

“The monetary difference alone is enormous,” Bowden says. “People are barely able to eat and keep a roof over their head [on Newstart] let alone go and visit friends or take part in the community.”

The other way people find themselves on Newstart is through a review. In 2016 the Turnbull government announced it would find those it alleged had wrongly obtained the DSP, by conducting 90,000 reviews over three years.

Carolyn Odgers oversees the Welfare Rights Centre’s free legal clinic for DSP applicants and says when the program began, the service started getting calls from distressed people looking for help.

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“If they’ve been reviewed off, first of all, there’s emotional distress because some people interpret that decision as saying they don’t have a disability or their disability doesn’t meet the requirements for disability. That’s a shock. The other shock is the financial difference between DSP and Newstart,” Odgers says.

By 18 October 2018, the policy was abandoned and the Department of Social Services revealed during a Senate Estimates hearing that just 2% of cases – 555 of 28,784 reviews – were ineligible under the current rules.

“It’s difficult enough with a mental health issue, regardless, and then to have this overwhelming fear that it’s going to be taken away. It stops you from doing things,” DeWilde says.

While she understands there is a perception that people on DSP have it easy, the reality, she says, is anything but.

There have been times when money was so tight she has picked mould off food and eaten it anyway. Having no capacity to build savings has sometimes meant she can’t afford reading glasses or has struggled in emergencies.

“The hardest thing was, at one point, not having the money – my dog Mojo, the dog I had, who unfortunately isn’t with me any longer, he got really sick one week with a terrible ear infection,” she says.

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“I took him to the vet and I asked how much it was. They said $1,500 and I nearly fainted. I asked about the level of pain he would be in and they said it was excruciating.

“I loved him so much and I thought it was so unfair that I couldn’t help him.”

Mojo recovered thanks to help from her uncle, and “it made me realise, what are other people doing who don’t have a Mojo? Or an uncle Brian?” she says.

DeWilde says she is just thankful for a stable income and a home that is rent-controlled through a local housing association. Still, the 51-year-old can remember a time when those things were expected.

For many, she says, they are now a luxury.

Reporting in this series is supported by VivCourt through the Guardian Civic Journalism Trust