National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1120
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
This is my raw and honest account of how being a late diagnosed female with asd at age 47, now 51, with four now mostly grown children, all at some varying degree on the spectrum. How the proposed cuts to the NDIS and any ongoing funding will affect us.
Most days I function as a single mum while being a carer to two of my boys with asd (30 yr & 15yrs) and solely running my art business part time. I have survived a childhood with my birthmother being diagnosed with bipolar, loosing my father to a heart attack at 17. I lost my first partner and father to my two first children sadly to suicide. My mother passed away 15 yrs ago, my sister 10 yrs ago. Both my first husband (an alcoholic) and second husband subjecting me to financial and emotional abuse resulting in C-PTSD and 6mths of burnout after walking out of our business and leaving me to navigate the aftermath.
I manage both my sons NDIS plans, I coordinate with plan managers, service providers, specialists, etc. I’ve had to learn to advocate for them, be their voice, their nominee all while trying to keep a grasp on my own mental health. Some days this is all too much, and I withdraw into my own dark cave.
My eldest has been under the NDIS since he was 18. He now shares a private rental with his slightly younger sister who has also recently submitted her own application with the NDIS. This situation is only possible with the supports he has in place with his current funding. He is taken food shopping once a week. Assisted with food preparation and making a bulk meal for the week. He also has type 2 diabetes managed thru medication, diet and exercise. He uses a CPAC machine to assist his sleep apnoea. These all need managing. There is a once a week cleaner and regular lawn cutting.
If these supports were to suddenly stop, the ripple affect would be devastating. Who would pick up the extra support he requires? Me, his mum? His siblings? We have no extended family here in Tasmania. I am the only one with a drivers’ license in our family, all my grown children rely on me to take them to appointments and anywhere else.
My youngest son (15) also ASD, struggles with Arfid, sometimes he only has a handful of safe foods that he’ll eat. He can forget to eat if I don’t remind him. His social life is quite limited. He can be selectively mute when stressed, prone to meltdown if routine isn’t kept or there are too many changes. He stayed with the same support worker since he was about 9 until recently when that worker moved on. He is currently trying to cope with new workers.
I’ve recently put in my own NDIS application, due to my reoccurring C-PTSD and asd. I’m getting older and my resilience is lessening. I’ve met discouragement in the process, weighing up the cost of obtaining a report if it is deemed I don’t have enough evidence of my diagnosis. Learning of the horror of state care from history and wondering if that is the fall back to the looming NDIS cuts. Will history repeat itself and those who are just getting by with the little supports they have ending up in a horrible collapse of terrible disassociation in
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1120
state care. Or worse, wandering the streets homeless or taking their lives. Please reconsider the NDIS funding cuts and go after those providers who are the redacted system.