Disability community says NDIS 'fighting the wrong battles' over funding plans

Chantel Moody spends her day carefully planning her movements, down to when and how much water she consumes.

The 28-year-old said her National Disability Insurance Scheme (NDIS) funding plan limits her to around seven hours a day with a support worker.

The administrative assistant has spinal muscular atrophy, which becomes progressively worse over time, and it affects all her muscles.

"I am highly disabled," Ms Moody, who uses a power wheelchair, said.

"I've got no movement in my arm … I can barely scratch my nose. I need assistance with everything."

She said she had asked for more support worker hours in her plan, but that was rejected.

It has left her without assistance for hours.

"[So], I'm not going to drink this much water now because I don't want to have to go to the toilet," Ms Moody said.

"Or I'm going to eat this now so at least it can take me through till later".

She has begun appealing her NDIS plan, received in August, at the Administrative Review Tribunal (ART).

Her first case conference was at the tribunal last month.

"It has been an ongoing battle with NDIS," she said.

NDIS 'fighting the wrong battles'

The tribunal reviews a raft of federal government agency decisions, including those of Centrelink, child support, taxation, and work compensation.

The chief executive of Queensland Advocacy for Inclusion (QAI), Matilda Alexander, said data showed the NDIS component of the ART had "a lot higher success rate for applicants" compared to other areas.

The National Disability Insurance Agency (NDIA), the agency that implements the NDIS, spent $60 million in external lawyers to fight participants at the tribunal in the last financial year.

Data from the eight months the ART was active in 2024–25 shows about 73 per cent of those cases resulted in the NDIA's decision being overturned.

More recent data shows a modest drop in the overturned rate to 65 per cent.

"They're fighting the wrong battles," Ms Alexander said.

"What they should be doing is putting that money into making the right decisions in the first place".

Ms Alexander said the main reason participants were going to the tribunal was to access more support for day-to-day life.

"Things like showering, things like getting out of bed, brushing your teeth, all the things that we should all be taking for granted," she said.

QAI offers support to participants going through the tribunal process.

"Our books were full, and we opened them up for three hours and filled three months in advance," Ms Alexander said.

"There is a huge demand."

Federal Health Minister Mark Butler announced in April that there would be major changes to the NDIS to reduce spending on the scheme, which costs more than $50 billion a year.

Those changes included cuts to the number of participants on the scheme and decreasing funds for social and community activities.

Ms Alexander said it was a confusing, devastating and frustrating time for the disability community.

"There will be desperate times where people are looking for any appeals mechanism," she said.

'A disability tax'

Ms Moody's partner, Jaydan Rufus, is also undergoing the ART process over the NDIS plan he received last year.

"I did express to them that I'm not happy with this plan and I will be escalating it," Mr Rufus said.

The 28-year-old, who has cerebral palsy, had hoped his new plan would include more funding for a support worker to help facilitate him and his fiance on holidays.

"If I was a normal able-bodied person, I wouldn't have to pay for an extra person or two people to accompany me on a holiday," he said.

On a recent cruise, Mr Rufus, who works two jobs, paid more than $3,000 for a support worker to help him and his fiance.

"That is essentially a disability tax," he said.

He hoped that through the tribunal process he could request a new wheelchair.

Mr Rufus's wheelchair clocks up around 40 kilometres a week, with parts of the chair falling off on his way to work.

"[It] literally had parts strewn across the entire road and I had somebody behind me picking everything up," he said.

Mr Rufus was thankful that the tribunal process existed but was concerned about the amount of money the agency was spending there.

Investment into new approaches

A spokesperson for the National Disability Insurance Agency (NDIA) said it supported the right of all participants seeking a review of agency decisions, including through the ART.

"It is not appropriate for the agency to comment on individual matters before the ART," the spokesperson said in a statement.

They said the agency had invested in new dispute-resolution approaches focused on providing earlier, quicker, and fairer outcomes for all participants.

The spokesperson said in 2024–2025, only 4 per cent of matters required a decision at hearing.

Mr Butler and NDIS Minister Jenny McAllister were contacted for comment.

Mr Rufus and Ms Moody said they were hopeful their cases at the tribunal could be resolved by the end of year.

"I know I'm going to win because I'm not asking for anything outside of the stuff that I actually need," Mr Rufus said.

Ms Moody wanted a more collaborative approach between the NDIS and participants.

"Knowing that they spent that much money to fight their battles that they're losing, obviously, it's just a silly way to spend money," she said.