Lisa Giles is "angry as hell" after being rejected twice for the National Disability Insurance Scheme (NDIS).
Ms Giles stopped working as a property manager in 2005 due to the impact of multiple conditions including severe cervical spinal stenosis, which causes neck pain.
She uses a walking stick, rarely leaving her home due to debilitating fatigue, and said "bad days" leave her with "tremendous exhaustion".
"I have about 2-3 hours a day that I can try and do something," Ms Giles said.
"I'm often in a lot of pain by night."
While Ms Giles, who lives an hour's drive west of Sydney in the Blue Mountains, has been on the Disability Support Pension (DSP) since 2006, she is "desperate" for more help.
Ms Giles said the DSP is not enough to cover all expenses and the cost of her multiple medications.
"I'm self-funding medicinal cannabis every 15 days. I am losing about 100 bucks every week on that alone," she said.
"I can't keep it up anymore."
Ms Giles said she is desperate for treatment such as remedial massage and hydrotherapy, but Medicare provided limited assistance.
"I need regular physio, not five visits a year … that's like a band-aid on a raging wound."
Ms Giles said she believes the NDIS eligibility system is not fair and equitable.
'No one's talking about the others'
The NDIS has come a long way since its inception about a decade ago.
Trials kicked off in parts of the country in 2013, before the transition to full rollout began in 2016.
The government declared the scheme "available to all eligible Australians, no matter where they live" in July 2020.
Today, while an estimated 4.4 million Australians live with disability, just over 518,000 — or about 12 per cent — are on the NDIS, according to the latest quarterly report.
Australians aged 65 and over are not eligible for the scheme, and disability advocates say people living with lesser-known or invisible disabilities can have a hard time providing evidence they fit the criteria.
They also say the application process is so complex and onerous that it can dissuade people from applying in the first place.
The future of the NDIS has been a major focus during the election campaign, amid a spike in participants reporting they've had their funding slashed in recent months.
Professor Anne Kavanagh, chair of disability and health at the University of Melbourne, said it was "troubling" to see the election campaign commentary dominated by the NDIS and suggestions by some the scheme was "out of control".
"Many state governments have completely withdrawn any funding from any other kinds of disability supports."
'Bureaucratic gaslighting'
Rita Barnett lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex and disabling multi-system disorder characterised by severe and long-term fatigue, among other symptoms.
It meant Ms Barnett had to stop work as a counsellor and psychotherapist in 2018, and while she received a total and permanent disability (TPD) payout through her superannuation, she has been rejected by the NDIS twice.
The 51-year-old, who lives on the New South Wales Central Coast, said the insurance agency approved her TPD claim "without question" and without having to go "above and beyond" to prove her disability.
"They seemed to believe and honour every doctor's report," she said. "It was quite a seamless process."
To fit the eligibility criteria, NDIS applicants need to prove a number of things, including that their disability is caused by an impairment, that the impairment is likely to be permanent, and that the impairment reduces their capacity to perform everyday tasks, work, study or take part in social life.
Ms Barnett said the National Disability Insurance Agency (NDIA), which runs the NDIS, told her in a letter it acknowledged her impairments were "permanent", but did not accept there was a "functional impact" because her condition was "fluctuating".
Married for 25 years to her husband Paul, Ms Barnett said she was lucky he worked from home and had his support.
"That's usually when I get the most emotional, because of the impact on him … the difference of having the support of the NDIS, for me, would mean that he could be rested."
The 'forgotten'
Professor Kavanagh said people with pain and fatigue-centric conditions had been "forgotten" by the NDIS and those on the DSP could not afford allied health care services.
"It's actually expensive to have a disability," she said.
Professor Kavanagh said the "original intent" of the NDIS was that a system — commonly referred to as "Tier 2" — would be established to support those outside of the scheme to access services through local area coordination.
But, she said, that system was not running as well as it could be.
"[The NDIS has] actually been mainly concentrating on doing plans for people who are in the scheme, so the people outside the scheme cannot access these local area coordinators who were meant to help them navigate the mainstream services."
The ABC posed a series of questions to NDIS Minister Linda Reynolds, including about the '"Tier 2" system, which were answered by a spokesperson for Social Services Minister Anne Ruston.
Senator Ruston's spokesperson said the NDIS was designed to provide supports to Australians with "significant and permanent disability".
"States and territories are still primarily responsible for ensuring all people with disability have access to the mainstream supports they require," they said in a statement.
The spokesperson said a re-elected Coalition would "continue to work" with the states and territories "on their shared responsibility to ensure appropriate supports [are] available to people with disability outside of the NDIS".
Labor's NDIS spokesperson, Bill Shorten, said the Morrison government had failed to run the scheme as it was intended.
"The Coalition abandoned 'Tier 2' framework from the get-go, which has left tens of thousands of people without any kind of supports," Mr Shorten said in a statement.
"If elected, Labor will centrally coordinate disability across government and bring forward a planned review of NDIS design, operation and sustainability."
