National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2986
To the Senate Committee on the NDIS Scheme Amendment Bill 2026.
I am the sole carer for my adult son, Rory Burnside. He was born with bilateral anophthalmia and bilateral complete cleft lip and palate. This means he has been totally blind since birth and has gone through at least 20 facial surgeries. He has also been diagnosed with Level 2 autism and epilepsy. He resides full-time with me.
Rory leads a full and productive life, thanks to the support of the NDIS and his wonderful disability support workers. He attends supported employment two full days a week at AbilityWorks, he is in a working musical rock band Rudely Interrupted, where he is a songwriter, vocalist and keyboard player, he attends various therapies to help him manage his health, behaviour and coping skills and he has four hours a fortnight with his disability support worker out in the community. They may attend a football match, go shopping or have something to eat. NDIS funding only pays for the support worker’s hours, not food or tickets. This is only four hours a fortnight, but it gives me that time in respite. I’m nearly 70 years old, I’m still working because I cannot afford not to, and I value this time Rory has every two weeks.
Rory’s band Rudely Interrupted has toured overseas many times, they’ve played in front of the United Nations, and he and Rohan Brooks, another band member who has an ABI, have been interviewed many times on TV and in the written press.
The proposed NDIS cuts for social activities have me extremely concerned. Even government analysis shows that those with vision impairment and psychosocial disabilities will be disadvantaged the most (The Guardian, May 20, 2026). The current discourse around people with disabilities being out in the community, visible to others, and spending tax dollars unnecessarily has to stop. Articles in the Australian Financial Review (March 15, 2026, Luke Kinsella) and interviews with people like Barnaby Joyce and Pauline Hanson further contribute to this hateful rhetoric.
Rory turns 40 next year. I’ve been dealing with disability supports and various funding mechanisms since his birth. I am Rory’s NDIS plan manager. I have many friends and acquaintances involved in the disability sphere, both receiving and providing services.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2986
I can see the areas within the NDIS that truly need improvement. Without doubt, fraudulent businesses need to be held to account and banned. Unwilling NDIS participants in these businesses need to be helped towards another provider, not punished. Barnaby Joyce’s disgraceful rant about how there were so many people on walking sticks rorting the NDIS is absolutely disgusting and totally wrong.
The other areas that I have noticed that need some sort of control (don’t forget, I’ve been in this are for almost 40 years) are the private companies springing up everywhere, advertising disability services, charging exorbitant fees, adding extra services such as report-writing, and not providing said services. Nobody should be getting rich from providing these services. Personally, I think many of these services should only be provided by non-profit organisations or go back to state governments.
People with disabilities are rightly scared. Parents and caregivers are scared. We have all worked hard to allow our community members with disabilities to be welcomed and accepted. My son is out there, with his white cane and his disability support workers, showing what life is like when you have support.