National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1172
To the Senate Inquiry on the new NDIS bill Social Licence” and the Human Cost of NDIS Reform
The language of “social licence,” increasingly used by Mark Butler in relation to the National Disability Insurance Scheme, suggests that disability support is conditional—that it must continually justify itself to the public as affordable, or risk losing legitimacy. But when government frames support this way, it does more than describe public sentiment. It shapes it.
It tells the community that the NDIS is something to be weighed, questioned, and potentially limited. It shifts the conversation away from rights and dignity, and toward cost and suspicion. And in doing so, it risks creating a narrative that people with disability are a burden, rather than equal members of society entitled to support.
For families like mine, this framing has real consequences.
I am the parent of two daughters with complex disabilities, including autism, deafness, and mental health conditions. Our daily reality is already shaped by navigating systems that are difficult to access and slow to respond. But what is changing now is something more subtle—and more dangerous. It is the growing sense that we must justify our existence in the system, not just to administrators, but to the broader public.
When the government emphasises cost and “sustainability” without equally emphasising lived experience, it creates doubt in the minds of ordinary Australians. People who have never had to navigate disability begin to ask whether the system is being overused. They begin to see funding as excessive rather than essential. And that perception flows directly back into policy, into decision-making, and into the everyday interactions families have with the system.
It becomes harder to be believed. Harder to be approved. Harder to be treated with dignity.
The reality is that accessing the NDIS is not easy. It is not generous. It is not something families take lightly. It is a process that requires us to present the most painful, distressing parts of our children’s lives to strangers—over and over again. We are asked to prove, repeatedly, how bad things are. Not how capable our children are, not what they could achieve with support—but how much they are struggling without it.
That process does not reflect a system being taken advantage of. It reflects a system that is already tightly controlled, and often inaccessible.
In my own case, I have spent five years fighting for something as basic as replacement hearing aids for my daughter. I am currently involved in proceedings before the Administrative Review Tribunal, where even the Tribunal’s ability to hear the case is being challenged. This is the level of resistance families encounter when seeking essential supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1172
At the same time, I am managing the full-time care of two vulnerable people. Both have experienced severe mental health crises, including self-harm and suicide attempts. One has had to leave school despite strong academic ability because the environment was not adequately supported. The other lives with constant pain while awaiting surgery, compounding her mental health challenges.
This is what sits behind the word “cost.”
When support is reduced or delayed, the impact is immediate and profound. It shows up in emergency departments, in police interventions, in school disengagement, in long-term mental health deterioration. It shows up in parents who are exhausted, isolated, and carrying responsibilities that would otherwise be shared by a functioning support system.
The idea of “social licence” should not be used to justify tightening access. If anything, it should compel honesty. The public deserves to understand what the NDIS actually looks like for the people who rely on it—not as a budget line, but as a lifeline.
Because the truth is this: the NDIS does not create dependency. It prevents crisis. It does not inflate need. It responds to it—often too slowly, and only after significant struggle.
If Australians are being asked to support the scheme, then they should be given the full picture. Not just what it costs—but what it prevents, what it enables, and what happens when it is not there.
Right now, the conversation risks losing that balance. And when that happens, it is not an abstract policy shift. It is families like mine who feel the consequences first, and most deeply.
“Social licence” should never mean that support is conditional on perception. It should mean that as a society, we are willing to stand behind those who need it—consistently, and without hesitation.
Regards