The six criteria the NDIS might use in its new eligibility rules

More than one in five NDIS participants are expected to be moved off the scheme under new eligibility standards to be rolled out from 2028.

The assessment tool still needs to be designed and participants, advocates and providers are trying to work out what the changes will mean for them.

“It will be an objective tool. It will be scientific. It will be evidence-based. And it will apply to everyone in the same way,” Health and Disability Minister Mark Butler told The Guardian’s Australian Politics podcast, shortly after revealing the biggest overhaul of the disability scheme since it was launched by the Gillard government.

“You won’t have this lottery about whether you can go in and get a report from a specialist, how long you have to wait, how much you have to pay. It will be far more objective and equitable.”

The new eligibility scheme still needs to be designed. Nothing is nailed down. Here is what we know so far.

How is the assessment changing?

Instead of needing a specific diagnosis to qualify for the NDIS, participants will be assessed on the degree of support they need.

“Access will be based upon a significant reduction in a person’s functional capacity that impacts their day-to-day living,” Butler said at the National Press Club in Canberra on Wednesday.

People with milder support needs will be removed from the scheme – an estimated 160,000 current clients– and Butler said they would be directed towards yet-to-be-developed state programs outside the NDIS.

While Butler insists that “no particular area of diagnosis that will be treated differently to others”, many of those currently on the scheme following a diagnosis of mild to moderate autism believe they are most likely to be removed under new rules.

Autistic participants are the fastest-growing section of the NDIS and the largest group, making up 43 per cent of the scheme. While annual growth among other participants is relatively stable, the number of autistic participants, mainly children, grew 24 per cent last year.

Butler says the single guiding principle of the new eligibility criteria is that it will look at “functional capacity”.

“That’s what it was built on, the idea of people with significantly reduced functional capacity that impacts their day-to-day living needs,” he told the press club.

What could the new assessment tool look like?

Butler said the eligibility assessment would be developed in consultation with the disabled community and a technical advisory group.

“I’m very much devoted to the idea of ‘nothing about us without us’. This is a big reform, it’s got to be co-designed with people with disability themselves,” Butler said, adding he was open to a bespoke design.

The World Health Organisation’s Disability Assessment Schedule (WHODAS) will also inform the development, a government source confirmed.

The WHO’s tool is a standardised method that considers six areas of ability: mobility, self-care such as hygiene and dressing, interaction with others, participation in the community, cognition and understanding, and life activities including work and school. The assessment ranks a person’s ability in each category on a scale of one to five, and a score is calculated based on the results.

What have NDIS families said?

Candra Sleeman, who has two children with autism, said she feared a standardised tool would not be able to assess the complexities of their needs.

She said autism presented differently in each person, and could vary day to day. Masking – a term used for the coping mechanisms used to hide autistic traits – could further complicate assessment.

“It’s going to be very difficult because the thing with autism is fluctuating capacity, and particularly girls are often very high-masking – so high-masking that they’ll present as no issues outside of the home,” she said. She predicted her six-year-old daughter, Lakshmi, would get removed for this reason.

“It’s too nuanced, I don’t see how they’re going to be able to do it,” she said. “[The assessment] needs to be done by therapists who know them.”

She said many therapies her children accessed were individualised, like speech therapy and psychologists, and she was concerned that the foundational supports that are expected to be developed outside the NDIS would fall short. The impacts on her mental health, job prospects, and family relationships could be disastrous, she said.

“I just cannot emphasise how life-saving and life-changing [NDIS-funded therapies] have been.”

What have advocates and experts said about the new assessment model?

Consultation with the disabled community will be key, advocates and experts have said.

Director of the MedTechVic research hub at Swinburne University, Professor Rachael McDonald, said the reform was an opportunity to correct the inequities in the diagnosis model, if done correctly.

“Two people who might have very similar diagnoses or functional issues will often come out with really separate plans. And sometimes that’s reasonable because people have lots of different circumstances, but it’s very difficult for people to investigate or understand why they’ve got what they’ve got,” she said.

She said the WHODAS was a reasonable tool to understand a person’s disability, but was not developed for the purpose of ruling someone in and out of access to the NDIS.

“We actually need something that’s a little bit more nuanced for Australian circumstances, and also that relates to what the NDIS does and doesn’t support,” she said. “That really needs a little bit more exploration.”

She said it was crucial the new eligibility tool was fairly administered and delivered by people who understood the complexities of less visible disabilities.

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