National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2568 - Supplementary Submission
Before you remake us, look at what we’ve built
For twenty-seven years I have managed individualised funding for my son — two decades under a Queensland disability grant, and the seven since he entered the NDIS. I organise support around what he actually needs, not around a code, a category, or a worst-day assessment. I was doing this before the NDIS existed. It works.
My son is blind and has no speech. He lives in his own home, chooses who supports him, and has an ordinary life in his community — safe, still learning, never once chemically restrained. And Gary sings — a call of pure glee that carries through the house — and it is how the people who love him know his life is right. Almost no one with his level of disability is allowed such a life: not because they are less able than he is, but because the system was never built to let a person be more than their diagnosis — a case to be administered to, rather than someone living a life. He is not a set of labels waiting in a corner. He is the proof that the scheme can work.
Seven years ago, when my son became a participant in the NDIS at thirty-seven, the story about me changed. Once, a mother like me was an object of pity, granted a little respite from her “burden.” Now I am cast as a suspect — someone poised to rip off the system and defraud the Australian people. I am not the enemy. I am a person doing difficult work well, and I am tired of being treated as the problem by the NDIA, which has itself become one.
The failures this Bill answers are not ours. The NDIA is only thirteen years old, yet it has never grown into what it was meant to be. Instead of becoming the world-class scheme intended, it reached back to the institutional past it was created to replace, and sided with the service-delivery sector over the people it serves. People with disability and their families are frightened, bracing once again to fight for the basics. That disorder is not the work of those who self-manage; it is the result of poor administration, a thin grasp of disability, and a steady drift toward the interests of providers. Yet it is participants who are asked to pay — with their flexibility, their autonomy, and the presumption of their good faith.
None of what I do is radical. The Productivity Commission that recommended the NDIS, and set out the blueprint it was meant to follow, called for exactly this: individual budgets people direct themselves, spent flexibly on mainstream and specialist supports alike, with local organisations close to families to help them plan. The Commission warned against a system “built around the needs of the system rather than those of individuals.” That is precisely the system the NDIA has rebuilt. I am not deviating from the design — I am keeping faith with it.
And the help the Commission imagined — local organisations to teach families to plan and self-direct — was never built. The NDIA offers self-management, then leaves you to master a heavy bureaucracy alone, so only the most determined take it up. The answer to “not everyone can self-manage” was always support, not suspicion.
Most of us want something very ordinary: our own lives, and for our sons and daughters to have theirs. And we are not the risk we are taken for — a self-manager holds no pool of cash, only a budget, and not a dollar moves without an invoice for a support actually provided. Deliberate fraud is rare, and the powers to deal with it already exist; far more often, “misuse” is a person struggling without help, who can be identified and supported
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2568 - Supplementary Submission
to get it right. The integrity failures this Bill chases have largely been in provider and intermediary billing — not in the households quietly managing their own budgets.
These failures are no mystery — everyone in the building knows them. The trouble is that they are complex, and complexity cannot be answered with blanket rules; it can only be handled one life at a time. That is exactly what self-direction does, and exactly what this Bill would take away.
So before you remake us, take a good look at what we are doing. Protect the individualised-planning and participant-direction principles this Bill would repeal — they are the ground self-management stands on. Keep the funding flexible enough to follow a real life — usable for mainstream supports and for the natural relationships that carry a person — rather than narrowing it to registered services. And build the support that helps families learn to self-direct, as the scheme’s own design intended. We are not the threat to the NDIS. We may be the clearest evidence of what could save it.
Do not punish us for failures that were never ours.