National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 524
26 May 2026
This submission is from lived experience. I am not writing this as a professional, an organisation or a policy expert. I am writing this as Clay’s mother and as someone who has spent years living the reality of disability, caring, advocacy and survival.
The proposed legislation and direction of reform under Mark Butler fills me with fear because we are already seeing the consequences of increased restrictions, reduced flexibility and systems that place compliance and control above people. Clay’s NDIS was cut by 60% in February 2026. This proposed legislation is his and his family’s reality.
Clay’s life is increasingly being micromanaged. By his Support Coordinator, Service Provider and myself. Before his catastrophic cut in February Clay was completely in charge and benefited from accessing an Independent Support Worker. Many was the time Clay would be leaving the house yelling over his shoulder something about where he was going with this Support Worker. He is 24. He became very familiar with not needing to seek permission and overnight that came to a halt. Now he has to ask me, talk to his Support Coordinator and then check a Support Worker he is comfortable with has availability. His core funding budget is so very tight we cannot allow for a minute of error. He has lost privacy, autonomy and genuine choice. He lost his private support worker — someone he had developed a wonderful rapport and trust with. That relationship mattered. It was not simply a line item in a budget. It was stability, familiarity and emotional safety.
Since losing that support, we have seen increasing mental health challenges and behaviours that concern us deeply, including self-medicating. We have watched his wellbeing decline in real time.
We were moved to a registered provider arrangement that promised support and outcomes that simply have not eventuated. Expectations were set and then not met. Instead of reducing pressure on our family, it has created more stress and more work. I am no longer just Clay’s Mother. I am his gatekeeper. This additional workload on me has been very distressing and has impacted my own mental health. I am AuDHD and live with a psychosocial disability and am not accessing NDIS.
Clay’s business, which had been thriving and represented genuine independence and purpose, is now suffering. Despite extensive efforts from the support coordinator—including work well beyond their allocated hours and arguably beyond what should ever be expected of their role—we are seeing things fall apart.
Advertising has stopped. Community engagement has disappeared. No community posts have happened and there has only been one recent Facebook post on his page. The whole theme and feel of the business has changed. Even his profile image was replaced with an AI-generated image that removed the colours and branding Clay had personally chosen and been involved in creating. It sounds small when written down, but it is not small. It is another piece of his autonomy and identity disappearing. The Sara Lee effect – layer upon layer being eroded and all dignity removed. Clay’s business saw him successfully become a valued member of his community. We know from the Disability Royal Commission that belonging and public access forms a layer of protection so vital for Clay and the diversity of our community.
The support coordinator has gone above and beyond simply to keep Clay and our family functioning. That level of effort should not be necessary. Families should not have to rely on workers sacrificing themselves to hold broken systems together.
Moving to registered support workers has brought unfamiliar people into Clay’s life, increased stress and reduced his ability to choose who comes into his home and who supports him. The flexibility and control we previously had is gone. We have turned Support Workers away simply due to the fact that
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 524
strangers had knocked on our door. The protocols we had insisted upon of reviewing profiles and Clay having a meet and greet ignored. Time and again we had to remind this Service Provider that only Clay chooses who he spends his time with.
At the same time, the financial impact has become devastating. Clay’s business can no longer sustain even its own operating costs. There is no capacity to simply change providers because there is no funding available to re-establish services or rebuild support systems yet again. We have also seen reductions in capacity-building supports because of budget limitations.
It is beyond frustrating to continue to work with a Service Provider to iron out the issues they had been clearly tasked with simply because there is no place else to go. No budget to work with.
Our family is experiencing complete overwhelm.
For years we have worked extraordinarily hard just to stay in survival mode. We have fought for every small piece of progress, every support, every tiny movement toward greater independence and a future where Clay can have a life with security when we are no longer here to provide the scaffolding around him.
Instead, the rug keeps being pulled from under Clay and further exhausting us.
We are no longer moving toward increased independence. We are struggling to manage the basics— work, friendships, caring responsibilities and simply getting through each day.
The long-term choices we have made throughout Clay’s life have come at enormous cost. We reduced work and income. We sacrificed investments and financial security. We experienced increased health impacts ourselves. We accepted reduced options for housing, cars and lifestyle.
We do not regret these choices. Not for one second.
They were necessary because they were what Clay needed.
But the reality still exists that our future—and Clay’s future—has become significantly more limited because of failing systems.
We have cut everything we can. At enormous financial and personal cost for Clay.
We have reduced expenses including private health cover despite heavily relying on it during our disability journey. We do not eat out. We do not buy takeaway. We do not travel. We do not buy clothing unless necessary.
There is nothing left to cut.
And that is perhaps what is so painful. We are now expected to somehow absorb even more.
The irony and futility of writing another submission is not lost on me.
We made submissions to the Disability Royal Commission in a private hearing. We contributed to the Senate Select Committee on Autism in Brisbane (Clay and I presented on the day). We contributed to the National Autism Strategy and the NDIS Review.
We keep speaking.
We keep telling our stories.
And still we are not being heard.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 524
I also ask: where is Autism Queensland in all of this? Why is our state peak body silent? Families are terrified and exhausted and yet many organisations appear absent or constrained, seemingly fearful of threatening funding arrangements.
The loudest voices speaking publicly often do not include actual autistic people or families living this reality every day.
Meanwhile families like ours continue carrying the consequences.
These reforms and legislative changes are discussed in policy language and financial terms, but behind every funding reduction, every restriction and every shift toward greater control are real people.
People like Clay.
The families who provide the support.
We are already at breaking point.
Create systems that provide support and are disability led. Fund peak bodies and advocacy organisations to assist all who are falling through the cracks. Do not provide grants that are double edged swords with the risk of losing them should you seek to provide constructive feedback. All people are one accident, one birth away from a life of disability. It is a life that is still rich and full.
These are not reforms.
They are our lives.