Facing an Uncertain Future: Jane’s Concerns Over Potential NDIS Reductions Amid Her Degenerative Disability

Jane Britt from Queensland has been on edge recently, eagerly anticipating the federal health minister’s remarks on the National Disability Insurance Scheme (NDIS). The uncertainty surrounding her future weighed heavily on her mind.

However, when Mark Butler revealed plans for a significant revamp of the scheme, Jane’s worries only intensified. As a deafblind individual with a degenerative condition, the NDIS represents more than just support for Jane; it embodies autonomy and empowerment.

The resources and assistance she receives through the NDIS have been crucial, allowing her to navigate her surroundings independently. Without this support, Jane fears she would face social isolation.

“The announcement has been deeply unsettling for the disability community, especially for those of us who depend on the NDIS,” Jane shared with SBS News, expressing the community’s growing concerns.

“It’s a really distressing announcement for the disability community, for those of us that rely on the scheme,” Britt told SBS News.

“This is an announcement which potentially strips back our supports, takes away the choices to be able to live the life in the way that we want to choose, to be able to be safe and to connect to our communities.”

In a highly anticipated address to the National Press Club on Wednesday, Butler announced eligibility will be tightened and financial support reduced, as the government tries to rein in the growth of the NDIS.

As part of a broader package, about 160,000 people are set to lose access to the NDIS.

Legislation, expected to be introduced to parliament in May, will aim to reduce the number of participants on the scheme to around 600,000.

There are currently around 760,000 people on the scheme. The government wants to reduce it from a projected 900,000 participants.

Butler said a “diagnosis gateway” had funnelled people onto the scheme that “was never designed for them”.

“It is our responsibility to make sure that in the future, these Australians are pointed to the right place,” said.

Annual growth of the $50 billion scheme has reduced from 22 to 10 per cent since 2022, but remains far from the 5 to 6 per cent target agreed to by National Cabinet earlier this year.

Butler wants the scheme reset and returned to its roots, leaving eligibility “based upon a significant reduction in a person’s functional capacity that impacts their day-to-day living”.

As her disability is degenerative, Jane is unsure of what her future will look like.

“I’ve been quite worried in the lead up to this around what it will look like for my future, and whether, when I do lose my vision, which is already quite a confronting prospect, that the support that I need to be able to do the practical things of my life — go to work, go outside, take my dog for a walk, be in my community and say hello to the people every day that I don’t even know the names of — I’m worried about all of that being stripped away.”

Jeramy Hope, president of People with Disability Australia (PWDA), said the number of Australians who will lose access is “frightening”.

“Without NDIS supports, there’s no work, there’s no true access to family and that dignity that we see, that we have at the moment with the NDIS,” he told reporters in Canberra.

Hope said Australians with disability needed reassurance that “there’s still going to be support available and there’s no risk”, ensuring they are at the centre of any change to assessments.

As part of the changes, standardised assessments will be rolled out, with a list of diagnoses no longer the sole standard of access.

An advisory group, the disability community, and states and territories will help formulate the eligibility tests, with those who don’t meet the new benchmark directed to other support services.

“There’s no particular area of diagnosis that will be treated differently to others. What it will mean is that Australians with lower support needs or higher functional capacity, depending on your perspective, will be moved out of the scheme,” Butler said.

Emma Bennison, Disability Advocacy Network Australia CEO, has called for a robust tool to ensure functional assessments don’t leave parts of the community behind.

“It’s naive to suggest anything other than that … this is going to disproportionately impact people with psychosocial disability and people with autism,” she said.

“We need to make sure it’s designed for the broadest possible range of people, across the broadest possible range of cohorts and alongside people with disability.”

What else will change?

Butler outlined several measures, including reducing the $12 billion spent on community and social participation.

He said the average spend per participant had grown from $14,000 to $31,000 since 2023.

Measures also include tightening of registration for providers, reducing third-party intermediaries and cutting down on unscheduled reassessments, which has driven growth of eligibility.

A $200 million fund will also be set up to rebuild capability in the disability sector among community organisations.

Butler said the scheme “costs too much and it’s growing too fast”.

“We can’t afford for the NDIS to continue growing at its present rate. But far more importantly, we can’t afford for the NDIS to fail.”

— With additional reporting by the Australian Associated Press.

For the latest from SBS News, download our app and subscribe to our newsletter.