National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1513
I would like to share a snippet of my life today as a mum of my son who is an NDIS recipient and as a doctor who works in our health system.
My day began as a single parent of 3 where I woke to prepare the children for school and myself for work. My son is 14 and has Down syndrome and also Autism level 3. He is completely reliant on another person for basics like dressing and self cares and is non verbal. A support worker arrived at 6:30 am to help my son get ready for his school bus as I start work at the hospital early today to see patients in a General Paediatric clinic. I catch the train in and receive messages from the support worker about my son refusing to put his shoes on or get on the bus. My other younger 2 children aged 12 and 9 tried to help also but to no avail. I am torn- do I go home and abandon work calling in sick or continue? A plan is made for support worker who calls in backup and they drive my son to school.
I work a busy day in clinic of complex patients while also fielding a phone call from my son’s school to express some concerns about my son. I arrive home around 5.15pm to greet the support worker who has met my son from the bus in the afternoon and she heads home. I cook dinner, help my son with a bath and unwisely forgot to remove my necklace which means I got choked a little when he grabbed my necklace and wouldn’t let go. I dress him and clean his teeth, clumsily shave his adolescent moustache and prepare him for bed. I read him the same stories that he has loved since he was a young child. A moment of connection but it brings me sadness to be performing the same bedtime rituals for him now as I did when he was 2.
I work full time, juggle 3 children including my son with his disabilities and while grateful for NDIS I worry what his and my future look like. Will I be able to continue in my career once he leaves the safety of the school environment and is reliant on adult care? I stretch out the 6h a week my son gets funded for support work to allow me to work beyond a school day and support my family. Will my other children resent me and their brother for having their needs ignored also? They certainly are more mature than other children their age by helping to care for their brother with a disability.
On the flipside as a clinician I have seen the waste of funding, unscrupulous providers and a faction of people that NDIS disables further and entrenches reliance on the system designed to help them. There are no easy answers and changes need to be made but my suggestion would be around more clinician involvement in access and recommendations of evidence based treatments and more funding of community led programs. A screening tool to see who is appropriate to self manage their NDIS I would also recommend, I see people who can’t manage a household budget let along manage funds for NDIS effectively.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1513
Tomorrow is another day. Of speech therapy for my son, work seeing tricky patients and then running my 2 other children to and from soccer training. I hope NDIS continues to support families like mine.