The National Disability Insurance Scheme (NDIS) has been a beacon of hope for many Australians living with disabilities, offering them the support and resources needed to lead more independent and fulfilling lives.

However, as we entered the latter part of 2024, the NDIS began to roll out a series of reforms that have left many participants feeling uncertain and anxious about their future within the program.


The NDIS, a $35 billion initiative, has undergone significant changes since October 2024, with new legislation introducing updated lists of fundable items, revised early intervention requirements, and more.

These changes have already impacted how support is provided to some 646,000 individuals who rely on the scheme.

Yet, the reforms are far from complete. March has been marked as a critical period for further consultation on key elements such as the support-needs assessment tool, which will determine the level of public funding allocated to each person based on their impairments.


The tight timelines and limited scope for consultation have raised concerns among advocates, who argued that the promised co-design of crucial aspects of the new system is virtually unattainable.

The foundational supports, which are to be provided by the states and territories as agreed upon by the national cabinet over a year ago, should be operational by 1 July.

However, there is still a lack of consensus on what these supports entail and the infrastructure required to deliver them.


Adding to the sector's unease is introducing a new NDIS minister and the prospect of a looming federal election.

But perhaps the most distressing issue for people with disabilities is the fear of receiving a letter from the National Disability Insurance Agency (NDIA) indicating that they may no longer be eligible for the scheme—a scheme they were assured would support them for life.

This fear was underscored by a recent decision from the administrative review tribunal, which questioned the legal basis for the NDIA's practice of reversing the burden of proof of eligibility onto participants.

Veronica Stephan-Miller, the woman at the centre of this case, described her interactions with the NDIA as so stressful that they affected her health, including her eating habits.

'I have a PO box,' she said.

'And at that time, I wasn’t getting my mail regularly, so it was 10 days before I actually picked the letter up. I went into panic mode.'


Many participants have faced similar challenges when their eligibility came under review, often with little clarity on what additional information the NDIA required.

The process is not only alarming but can also seem absurd, as evidenced by one case where a participant's eligibility was questioned not due to their permanent disability but because the agency lacked a copy of their ID.

The reversed onus of proof, reminiscent of the controversial robodebt scheme, has been distressing for participants and frustrating for allied health workers who provide the necessary documentation for eligibility and funding assessments.

Muriel Cummins, from the Occupational Therapy Society for Invisible and Hidden Disability, expressed concern over the rapid pace of reforms and the lack of communication with health professionals despite their critical role in the system.

'We’re seeing people who have conditions like [multiple sclerosis] and Parkinson’s, which are lifelong, permanent and often degenerative conditions, receiving notices for eligibility reassessments,' she said.

'It’s a real shock for the participants, and it’s also a real challenge for us as therapists to understand what the NDIA is actually asking for.'


The NDIA's focus on reassessing eligibility, particularly for conditions that are lifelong and degenerative, has led to a significant number of participants being removed from the scheme.

At a Senate estimates hearing, it was revealed that 1,200 participants, mostly children, were being reassessed weekly, with nearly half losing their NDIS access.

The situation is equally problematic for service providers. Rodney Jilek of Community Home Australia shared the financial strain and emotional toll of providing care without adequate funding due to delays in plan reviews.

The NDIA's emphasis on preventing provider fraud has also resulted in payment bottlenecks, forcing Jilek to use his funds to keep his business afloat.

In response to these issues, the new NDIS minister, Amanda Rishworth, has stated her intention to meet with disability community representatives to address concerns related to the scheme.


Meanwhile, an NDIA spokesperson acknowledged the need for improvement in participant communication and reassessment timeframes, indicating that changes are on the horizon.

Jeff Smith, CEO of Disability Advocacy Network Australia (Dana), argued that the sudden removal of NDIS access without proper foundational support harms individuals.

'The approach here might be OK under the letter of the law, but it certainly breaks the spirit of the legislation,' he said.

'It’s certainly inconsistent with the idea that the changes that we make will take place in lockstep with the implementation of foundational supports so that people are looked after under some system or another.'
How will the NDIS reforms affect people with long-term conditions? How can the NDIA improve communication and reassessment processes? Let us know in the comments below.