National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1517

My 4 year old little boy has level 3 Autism and GDD. For the most part, he is nonspeaking and has quite a few challenging behaviours. I also have a 2 year old daughter who although is presenting as neurotypical, is tremendously affected by autism - her brother’s autism.

Every day, we do not know what we will experience that day. If it’s a good day and my son is regulated, it’s like Christmas to me. However, like Christmas, these days are not frequent. Nearly every day, I have to witness my son slamming his head on the tiled floor, into walls, into furniture because the dysregulation and frustration inside his head is too much. I have to watch my daughter look on with fear and concern in her eyes - suffering from anxiety at a mere 2 years old. I am unable to turn my back for 10 seconds or use the bathroom without fear of my daughter being hit, bitten or pushed - all because she is in the vicinity of my son and his ‘precious items’. If I leave anything out on the bench, it’s smeared into the floor or walls. If I leave any marker or pen out, it’s used on the wall. If I’m 1 second too late in changing my son’s nappy, it’s smeared into the floor and walls. Every thing in my life revolves around managing my son’s behaviour and regulation - and ultimately, my 2 year old is the one that it impacts the most. We cannot leave the house unless I have a second adult as my son will elope and run for the nearest water source. I can’t take him out without a second adult as he could have a meltdown and needs to be physically carried home. While being at home is his safe space, it means that my daughter doesn’t get to experience the world outside of our 4 walls.

I am unable to work outside the home due to his therapy schedule and I am unable to put him in childcare because of his behaviours. The financial toll - both short and long term is tremendous. If we had to start paying for his critical services, it would be too much pressure on us and I fear we would financially collapse. As it stands, due to the stress of our family dynamics, I have found myself in and out of hospital with stress induced neurological conditions and am undergoing neurological testing. I fear that these conditions would be exacerbated with the new NDIS bill which would undoubtedly land me back in hospital, putting more pressure on a crumbling medical system.

These NDIS changes will be extremely harmful to its participants and their families. I fear that we will see a lot more parents crumbling under the extreme pressure of raising disabled children and my extreme fear is that we will have an increase in cases like the devastating event in Mosman Park WA. I understand that the system needs changes but this is not it. I am currently undergoing the review for my son’s funding and there are so many levels of different people who you need to explain the same things to - what is the purpose of all these people - cut out the middlemen and start saving there. On websites advertising NDIS banners, they are charging $90.00 for the exact same product that you can buy off Temu for $8.99 - this type of preying on the vulnerable should be illegal.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1517

I am begging you to take the emotional, financial, physical and mental toll that raising disabled children already comes with and at the very least communicate changes better and be more transparent. Announcing a new program and not having any details available is just anxiety inducing for those who already deal with a lot. No one should be in charge of the NDIS or changes to the NDIS without personally experiencing the impacts of the participants it services. I love my son so much but at the end of the day, he didn’t choose to live with extreme autism, I didn’t choose for him to have it and neither did his sister. Nobody chooses this life. With the current NDIS, we have been given the gift to breathe. We know that he is accessing the vital therapies he needs now to have a meaningful life in the future. We don’t need to worry about selling a car to pay for these therapies currently. But what do you do when these funds are cut and you have nothing else to sell? Do you just sit back and watch your child’s progression and quality of present and future life diminish? I don’t know the answer to this and I’m sure I’m not the only special needs parent that does.