National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3167
Committee Secretary Inquiry: The Național Disability Insurance Scheme Amendment (Securing the NDIS for Future Generațiuns) Bill 2026. Department of the Senate PO Box 6100 Parliament House CANBERRA ACT 2600 AUSTRALIA
deeply concerned about this issue, I have a rare autoimmune disease, Cogans Syndrome, that is too rare, around 1600 people in the world, to enable research or to find the genetics involved, which meant five years of testing and seeing many expensive specialists over five years and more money than I can count out of pocket because Medicare did not cover it. Cogans damaged my vestibular system, and I lost 70% of my balance, making me profoundly bilaterally deaf. I also experienced vascular eye inflammation and was told I may go deaf-blind. Luckily, after four years, I got compassionate access to a biological drug, and my eyes recovered.
Before Cogans Syndrome wrecked my health, I had been looking after my eldest child, Leon, who had multiple disabilities. They would wake up from 16 to 7 times a night for five and a half years, even after visiting the Tresillian centre. Eventually, after spending thousands out of pocket for specialists, they were sleep tested by a private paediatric sleep specialist and found to be waking 54 times an hour because their brain could not enter REM sleep (I have the documentation if needed). During this time, there was no NDIS yet, and I could not afford babysitting or private nurses, and my family refused to help. When mothers don’t sleep for more than five years, it permanently raises our immune system. It leads to epigenețic changes in your body, making you more susceptible to autoimmune disease, such as Cogans syndrome.
When they were a baby, and I needed help, I rang Lifeline and every other service in Sydney, and I couldn’t get any support. Nowadays, if this happened, you would be able to get support through the NDIS for nursing assistance at night. Night nursing would give you more practical help, expose you to more people’s advice, and lead to faster diagnoses and access to the right professionals. More importantly, I would have been a mother with good health. As a sick mother, I cost Australia exponentially more. Due to my disease, I couldn’t work for more than ten years. I had to support my son constantly, and I lost my work skills as a web designer. This is terrible for the economy. Also, the support workers we employ pay taxes, and their wages are spent in the local economy on food, rent, etc. The carer industry employs many more people than industries like mining.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3167
I currently have a second child with ADHD, ASD, and who is also trans, whom we are helping through the HSC. My husband and I are completely burnt out. AŌer more than a year of her being an hour late to school, we have, with hope, hired support workers to come in the morning to moƟvate her and help her get to school on Ɵme. I know for a fact that if we didn’t have this, she won’t finish high school, and my family and marriage won’t survive. We are very careful to use her NDIS funding only when we absolutely must, because we don’t believe in free handouts. Before we got this support, our daughter described feeling suicidal mulƟple Ɵmes because they couldn’t funcƟon without execuƟve funcƟoning from their ADHD, ASD, and mulƟple other disabiliƟes. When she has support, she can funcƟon and join school life with the other students, and she feels like she belongs somewhere. When someone is vulnerable, it is a life-or-death situaƟon. I believe finishing high school will help her with future employment opportuniƟies and self-esteem, and I’m grateful for the support we receive.
I am struggling with burnout as I’ve been looking aŌer two children with disabiliƟes without help for 21 years, on top of having a serious chronic disease and being neurodiverse with dyslexia myself.
Please don’t weaken the laws that protect the NDIS. Once you weaken the laws governing the NDIS, successive governments and powerful lobbies can use them to gut this incredibly important public healthcare investment. The iniƟal changes in the NaƟonal Disability Insurance Scheme Amendment (Securing the NDIS for Future GeneraƟons) Bill 2026 may appear relaƟvely harmless. SƑll, they will become a wedge to destroy support services for incredibly vulnerable families in the future. Just like initially, university fees started small and have become massive and out of reach for the average Australian.
Yes, we crack down on dodgy service providers, but we don’t make it so difficult for them that they close down. Especially for people in regional areas who need services like physio, speech pathology, and other varied services. Australians are doing it incredibly tough. We are in the middle of a cost-of-living crisis. We, the 760,000-odd Australians, desperately need this investment in our health to maintain our human rights and dignity. Can you be sure this new bill will not give future poliƟcians more power to degrade the NDIS further?
Regards,