National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3047
I am a solo autistic parent of five autistic children. Four of my children receive NDIS plans. These are plans that I as their parent and their carer have fought for extensively over the last few years since the NDIS was implemented. My second child was one of the first NDIS participants in the Shoalhaven to receive a plan. I have every ‘level’ of autism living in my house from myself considered level 1 and not needing much support to a level 3 who consumes almost all of my time to support their needs.
How can one define functional capacity? The term functional capacity isn’t a term that can be lumped into one definition to cover everyone who currently receives or will receive the NDIS in the future. I’ve always been of the belief, at least in the regard to autism, that investing more when they are younger benefits the autistic person and those around them in the future. The functional capacity of one autistic child for example may differ significantly to another autistic child with the same level and the same diagnosis.
Imagine waking up every day after 6 hours of sleep or less and being attacked by your child because of a neurological condition that they have absolutely no control over. Now imagine spending every moment of every day just waiting by the phone when that child goes to school and is so unregulated that you have to collect them constantly, which then affects their education. This is a reality for me and my family, for my child. And if this child didn’t have access to the NDIS which pays for the occupational therapy and other therapies this child receives, then this child would be so much worse off than they are now.
As for supports being related to a participants “impairments”, as above, what works for one person may not work for another, and this is what the government doesn’t seem to understand. I follow a devoted mother on TikTok of a disabled child in Australia who fights tooth and nail for what her daughter needs from the NDIS, and I know what works for her child may not work for mine, even if mine shares one aspect of her child’s disability. But seeing that even a child with a disability that requires 24/7 care can’t receive the bare minimum of support work hours in order for their mother to be able to breathe and relieve herself of some of the mental load of parenting a child with disability, it scares me some days to
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3047
imagine if parenting a child with a disability will be the end of everything for me. What’s “reasonable and necessary” is definitely something that differs depending on personal circumstance, and that’s what the government is not accounting for. As a solo parent, who am I meant to share the mental load with? A single parent household may need substantial more supports than a duel parent household. But a duel parent household may need supports in other ways.
In reality what’s wrong with the NDIS is the price guides and what providers are charging. The NDIS price guide sets the maximum providers can charge, which is all well and good, until providers are charging for absolutely every little thing without consulting the participant or their advocate.
You want to define “reasonable and necessary”, then talk to a mum or a dad of a child with disability. Talk to a parent who has more than one child with a disability. Want to define “functional capacity”? Come spend a day in my household with six autistic people. Have a look at my weekly calendar and try to figure out how I balance the mental load of therapies that I believe ARE reasonable and necessary. Because I’m here raising autistic individuals and putting in the ground work so maybe one day they can function to a point where they don’t need to rely so much on the NDIS to live independently and to live happily.
The Australian government is so quick to say it’s autistic children blowing out the NDIS, but did you ever stop and think that maybe investing in autistic children now will in the long run save money. And not with this “Thriving Kids” plan which doesn’t seem to have any input from neurodiverse people. Autistic kids turn into autistic adults, autism doesn’t just vanish one day when they turn 18. It’s a LIFELONG disability, and something that is still seen with a stigma to it, such as the thoughts like “only boys have autism” or “autistic people are non verbal, or complete geniuses”. I can tell you now between my five children, there’s not one genius among them, but there’s definitely five little sparks that need nourishing to become bright stars.