National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3335
To the NDIS Committee Secretariat,
Subject: Submission regarding proposed modifications to the NDIS
I write regarding the current proposed modifications and legislative changes to the National Disability Insurance Scheme (NDIS).
Believe it or not, this is a message of support for structural change, written from the perspective of a fairly recently onboarded NDIS participant (October 2024).
My Context and Lived Experience
To provide context, I am a single male in my mid-fifties living with a genetic, incurable, and degenerative neuromuscular disease (NMD): FacioScapuloHumeral Muscular Dystrophy (FSHD).
Because my condition is currently slowly progressing, a significant portion of my initial access request was grounded in the principle of early intervention. My goal was, and remains, utilising targeted interventions to slow my physical progression, thereby allowing me to continue working, supporting myself, remaining financially independent and avoiding the need for a disability support pension.
My annual allocation sits at just over $20,000. This is very low compared to the scheme’s average budget of roughly $60,000, and minuscule compared to the funding required by those heavily impacted by their disabilities.
I take a deliberate approach to my funding: I only use it as I strictly need it, not simply because it is there. Interestingly, this philosophy has frequently provoked surprise when dealing with the NDIA. Based on my discussions with planners, the agency appears far more accustomed to participants exhausting their budgets and requesting more.
Facing the Reality of Systemic Reform
When I first read about the legislative shifts moving eligibility away from a specific diagnosis and toward “functional capacity,” my immediate thought was that I might be transitioned off the program. While I do everything in my power to maintain my physical function—now thankfully assisted by NDIS funding—I still live with clear functional limitations caused by an incurable disease.
Yet, even facing the reality that a future review might deem me ineligible under new criteria, I still stridently support systemic changes to the NDIS.
As a participant, I have seen and heard of numerous instances of grift and graft by both providers and participants. This has created a perfect storm that threatens the survival of the scheme entirely. I have been on the receiving end of providers who have built their entire business models around the NDIS, aggressively encouraging me to burn through my funding, or attempting to navigate around funding structures to maximise their own financial gain.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3335
It makes me equal parts angry and frustrated to witness a pyramid scheme of businesses growing heavy on public funds, alongside participants who abuse what I see as an extraordinary privilege.
Moving Past the Media and Political Rhetoric
I am deeply frustrated by the current media skew, which frames all structural modifications as entirely negative. There is very little balanced coverage acknowledging the simple fiscal reality: without structural reform, the NDIS will become impossible to fund. Furthermore, I reject the hyper-politicised narratives from certain political factions claiming these changes will “end up killing people.” This rhetoric is ugly, manipulative and does nothing to support the disability community.
I readily concede that change causes immense anxiety. It is terrifying for people to fear their budgets will be cut or that they will lose access. However, as a community, we must remember that a little over a decade ago, state-based funding systems left most people with next to nothing. Forgoing non-essential funding now is an act of preservation; it is how we build a sustainable NDIS so that vital funds are always there for those who need them most.
Conclusion and Call to Action The NDIS was designed to lift a heavy burden from the shoulders of people with disabilities.
It has done that.
But parts of it have been subverted by bad actors draining its resources.
My intent with this submission is to offer a balanced, nuanced perspective from someone with lived experience. Before final recommendations are handed down, I urge the panel to:
● Engage broadly: Actively reach out to a wider range of low-to-mid budget participants to understand how these changes can be managed and mitigated on the ground. ● Include us in the room: Avoid paternalistic, top-down decision-making. Include participants in the adult conversations required to move the scheme forward.
Thank you for your time and consideration.
I welcome the opportunity to speak further before the inquiry panel should you require it.