Asphyxia woke on a Monday morning in February to flood waters surrounding her home in northern New South Wales. The nearby riverbank was rising rapidly, submerging cars and making rivers out of roads.
An evacuation order had been issued for Mullumbimby while Asphyxia was asleep. By the time she saw it, it was too late to leave. With a friend, she prepared food and water. In a zip lock bag they packed their phones, spare clothes and, for Asphyxia, hearing aids.
“Given that I am usually bed-bound … [I] managed to do so much more than I could have thought was possible,” Asphyxia, who uses a wheelchair, wrote in a statement to the emergency services for future planning inquiry. “But then I was spent.”
Asphyxia, who goes only by her first name, lives with systemic exertion intolerance disease, also known as chronic fatigue syndrome, inflammatory arthritis, deafness and depression.
As the water rose, Asphyxia’s home lost power and internet. She had no way of contacting anyone.
So when two residents floated by on a lilo, warning the tide was going to rise, Asphyxia crawled onto the inflatable. While terrified to leave her wheelchair behind, she did not think she would have the strength to swim through the water. “I didn’t know if I would still have a functioning wheelchair upon my return,” she says.
“Just the thought of being so trapped is deeply terrifying.”
With no ramp at her house, she could not move her wheelchair to dry ground before fleeing. When she returned home days later, the motorised wheelchair was soaked through.
‘Trapped at home’
Asphyxia says the National Disability Insurance Agency (NDIA) refused to pay the $2,500 cost to repair the wheelchair. She says the agency suggested she use her existing disability support funding “flexibly”, which meant the money would need to come out of her funds for Auslan interpreting.
Immobile and exhausted, she became bedridden for months after the flood.
“I barely had capacity to move my limbs and could do very little cognitively,” she says. “I became very trapped at home.”
Asphyxia is one of a growing number of NDIS participants who have taken their case to the administrative appeals tribunal.
The complex, costly and time-consuming process often pits people with disability against lawyers from private law firms. Only last month, the federal court warned the agency its role was not to be an “adversary”.
The new Albanese government argues the previous government mismanaged the NDIS, leading to a blowout in legal cases.
This month, the NDIS minister, Bill Shorten, launched a new alternative review system aimed at clearing these legal complaints through a more conciliatory process. He labelled the current situation “repellent and repugnant”.
Asphyxia’s experience suggests the new review process can’t come soon enough.
She says the NDIA originally agreed to fund a wheelchair, but not a ramp to help her use it.
Then, when her wheelchair was damaged in the flood, the agency agreed to fund the ramp, but not repair or replace the chair.
The People with Disability Australia president, Samantha Connor, says while incredibly frustrating, Asphyxia’s case is not overly surprising.
“The experiences of people with the NDIA has for some time been more negative than positive,” she says.
“We hear stories from people with disability about their plans being wrong, about not having enough support and not getting the support that they need every day. That experience is more common than it is not.”
An NDIA spokesperson says the agency has “worked with [Asphyxia] to process and approve her power wheelchair request which our records indicate was received, approved and claimed for within a month”.
They say during the NSW floods the agency prioritised urgent plan reviews so at-risk participants could access additional supports such as short and medium-term accommodation.
“The agency was in contact with Asphyxia during this time to ensure she was able to access part of her NDIS plan budget to pay for the [assisted technology] repairs, including her power wheelchair,” the spokesperson says.
Regardless, Asphyxia says the protracted paperwork process left her without a wheelchair for 10 months.
“At that time I thought it was almost over,” she says of her dealings with the agency. “But no, it was just the beginning.”
A constant fight for access
Asphyxia’s wheelchair, internally damaged by flood water in early 2022, stopped working entirely by June.
She applied for a replacement and requested funding for a wheelchair in the interim.
It was then that her request for a ramp was finally granted, seven months and two floods after the initial request. But the wheelchair replacement was declined.
So Asphyxia had a ramp, but no wheelchair to use it.
She had to go through the application process again for the NDIA to agree to the replacement and interim wheelchair hire, which was finally approved this August.
That process was made more difficult by a lack of provisions for her deafness – it took months for the NDIA to pay for an Auslan interpreter to sit in on the meetings, after a promise to have someone take notes fell through, and the agency denied her access to transcripts.
An NDIA spokesperson says it “funds Auslan interpreters when required for planning meetings, separate to funding in participant plans”.
Towards the end of 2021, Asphyxia applied to the administrative appeals tribunal for a review of the reasons provided for NDIA decisions and for a review of the decisions themselves.
She says dealing with the AAT has been another “constant burden to fight for access”.
The conciliation hearing was so draining it took Asphyxia 10 days to recover.
“I only have an hour or two of cognitive function available on a given day, and so much of it has to go to NDIS, which means I can’t use that precious time to work on my own projects or do something that would boost my spirits such as socialise,” she says.
“I am forced to waste a vast amount of time justifying my illness.”
Asphyxia is still waiting for a final hearing date before the AAT. With the NDIA bringing on board an external lawyer and barrister, she feels at a disadvantage. And after more reports have been summoned by the NDIA, the hearing could be pushed to next year.
“I oscillate between feeling so stressed and defeated and drained by their treatment of me that I cannot possibly go on and I just want to give up,” she says, “and determination that I won’t let them walk over me like this.”
