A new national survey by Children and Young People with Disability Australia (CYDA) has exposed the profound harm the NDIS eligibility reassessment process is causing families across the country.
Conducted in May, the survey of more than 200 young people with disability and parents or caregivers revealed widespread experiences of emotional turmoil and fears about being kicked from the Scheme despite proven need.
Nearly all respondents (99%) believed the reassessment process was unfair or unreasonable, with many describing feeling worried (70%), afraid (51%), and even suicidal.
"It's a really scary time for our community, [especially since] we've seen proof that it doesn't matter how much evidence you have, the NDIA have the power to make their own decisions and ignore expert advice," said Perth mother-of-two Mandaii Burgess.
When Ms Burgess received her son's new NDIS plan in December, she was left speechless.
Despite being told her seven-year-old son Nathaniel, who has level 3 Autism, would need two-to-one support at all times, the plan he was given has only one-sixth of the funding initially recommended.
With his therapy cut back and isolation increasing, he has since regressed dramatically, culminating in a recent rush to Perth Children's Hospital for urgent emergency surgery following an incident Ms Burgess says would not have happened with adequate support.
Even as his needs increase, Nathaniel's funding will be gradually reduced as part of his plan's 'step-down' process.
"It has been an incredibly traumatic experience for our whole family… [it's] breaking our family," Ms Burgess said.
"But I am speaking out about these issues because human rights should never come second to fiscal figures."
Nathaniel's experience is far from unique, with nearly half (48%) of survey respondents who had received an eligibility reassessment letter reporting having their funding cut or being removed from the Scheme entirely.
Children aged nine and under, as well as First Nations children and people with Autism, were disproportionately impacted.
Since late 2024, the NDIA has been conducting around 1200 reassessments weekly, with about 600 participants losing access as a result, and most of these being children aged five to nine.
CYDA CEO Skye Kakoschke-Moore said fear and uncertainty around reassessments were worsened by the ongoing lack of alternative Foundational Supports.
"Funding cuts and reassessments are stripping children of essential supports, often without sufficient explanation, and placing families like Mandaii's under extreme stress," she said.
"At the same time, the government has delayed the rollout of Foundational Supports that were supposed to fill the gap for those not on the Scheme.
"The gap has become a cliff, from which too many children and young people with disability are left to fall."
CYDA is calling for a guarantee that no child or young people will be removed from the NDIS, or have their funding reduced, until effective and co-designed foundational supports are in place.
Its new report makes several other key recommendations, including:
- A complete redesign of the reassessment process to make it transparent, timely, and fair
- Clear guidance on what constitutes 'additional evidence' for reassessments
- Training for NDIA staff in trauma-informed and person-centred practices
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