“The buck stops at Bill Shorten”: participants plead for NDIS fix

Participants say the NDIS is not delivering on its key purpose, but the government’s review provides an opportunity to go back to the drawing board.

NDIS Minister Bill Shorten must listen to the voices of people with disability if he truly intends to return the NDIS to its original intent.

That’s the sentiment of a new report based on a national survey of Australians living with disability, called Getting the NDIS Back on Track.

Prepared by Summer Foundation and supported by People With Disability Australia, the report is based on a national survey of almost 500 NDIS participants conducted in July 2022.

The participants were asked three questions about the NDIS: what works well, what they would change and how the NDIS has supported them to live an ordinary life.

Although some participants reported that the NDIS had helped them achieve important outcomes, overwhelmingly they told of difficulties in navigating the bureaucracy of the NDIS and NDIA, and fear at having their plans cut.

Participants were also worried about what government funding cuts, policy changes and miscommunications would do to their plans.

The relationship between participants and the NDIS and NDIA is characterised by mistrust and pessimism, the report found.

The Russian roulette of NDIS

Penny, one of those who took part in the survey, was part of the original cohort of the NDIS when it was first trialled in the Geelong region.

She said there were “teething problems” back then — but she didn’t expect them to last.

“I thought teething problems would come about and we would be able to make headway with planners in understanding what the process was and how reasonable and necessary supports would be defined,” she told Pro Bono News.

“But unfortunately, what’s happened is as government bodies have changed, they’ve tightened the ropes up and decision making and tried to cut plans. And with that, they’re cutting support services that are vital to individuals.”

She has experienced this first-hand, with funding for her modified vehicle recently cut from her plan.

And she said there is no recourse for this.

“There’s no one to talk to. It’s back to Bill Shorten to make a change to this. The buck stops at Bill Shorten.”

Penny said cuts to support for NDIS participants “put people back on the fringe”.

“It’s terribly difficult. You have to be watching your budgets the whole time and looking over your left shoulder to make sure that services aren’t going to be cut by the next planner that takes on your plan. And the stress that it causes you is undue and unnecessary and inappropriate.”

Asked what she’d say to the NDIS review panel or to the responsible minister, Bill Shorten, Penny said she’d urge him to look at the fear that participants are living under.

“It’s not fair on the individuals that have a disability to play Russian roulette with the planners. It’s not fair,” she said.

Fixing the NDIS

The federal government recently brought forward its planned review into the NDIS and announced an independent panel tasked with reviewing its design, operation and sustainability.

Announcing the review, Shorten promised to “bring people into the tent” and co-design a reimagined NDIS with people with lived experience of disability.

Pro Bono News understands a copy of the Summer Foundation’s report has been provided to the minister, to help inform the review.

Based on participants’ responses, the report made four recommendations:

• Communicating and collaborating in alliance with participants 
• An easier and more responsive system 
• Not living in fear of funding being cut 
• Supporting people with disability to live well.

Respondents said they needed better flexibility and more timeliness, and a more human approach from NDIA staff. They want staff to have more expertise in disability, to provide guarantees for essential services, and allow participants to renew their plans without the need for reassessment.

NDIS participants also called on the NDIA to partner with them to provide more support for those seeking employment or education, and to improve access to independent housing.

They also called for equity in NDIS funding for all people with disability.

Speaking to Pro Bono News, Di Winkler, Summer Foundation CEO, said the report “reinforced the fact that the NDIA really needs to engage the voices of NDIS participants, and lived experience is kind of critical to finding a solution.”

“At the moment it’s not efficient or effective and NDIS participants are passionate about having a say in redesigning the NDIS so that it works well for everyone,” she said.

She said the long-promised review of the NDIS would be essential for getting the scheme back on track to its original intent, being both cost effective and delivering the outcomes participants need.

But she cautioned the redesign should have the end user in mind, to make the NDIS easier for participants to navigate.

“Ultimately where we need to get to is people with disability need to be given an amount of funding and instead of having to negotiate line by line with government about how they live their lives, that funding should be flexible,” she said.

Read the full report online.