This is my submission to the NDIS Bill 2026
I am a participant and parent of a participant currently on the NDIS. I received an NDIS plan for level 2 Autism in 2024 which included funding for psychology, occupational therapy and a support worker to help me with household tasks and booking appointments. I have complex health conditions (connective tissue disorder and stress induced seizures) for which I do not have NDIS support but which drastically impact my ability to cope mentally and physically (left arm has 50% movement after 2 surgeries). I discovered last night that my support worker funding has been changed and I now only have funding for accessing community programs which is not helpful to me as I physically and mentally cannot engage in these programs and is not the actual support I need. I believe this is a direct consequence of the proposed changes to the NDIS. This means that I no longer have support to cook meals (which I frequently burn) and do household tasks such as laundry (meaning I have piles of laundry everywhere) because I don’t have the capacity or physical ability to fold laundry.
I am also a single parent to a 5 year old who has been diagnosed with 16p11.2 microdeletion syndrome, global developmental delay, and mild spina bifida. She was entered into the NDIS early intervention program at the age of 2 (2022). My daughter is also currently undergoing testing for Autism and ADHD. For my daughter the access to therapies that we have been able to get through the NDIS have been life changing, as a single mum working part time I simply cannot afford to pay the out of pocket expenses of private or even community therapies. We attempted to use the community therapies prior to applying for NDIS but they were not able to provide the level of supports that she needed. My daughter at age 5 has language, gross motor, and fine motor delays that require weekly therapy sessions. On top of this she struggles with social interactions, sensory sensitivities, and demand avoidance. Having NDIS support means we can use targeted therapies with a psychologist, speech therapist, habit coach, occupational therapist, and keyworkers. And the therapists can assist me with providing adjustment recommendations for education settings as my daughter just began prep this year and is struggling with school refusal. Without these supports my daughter would not be toilet trained, have some functional language to communicate with, be able to walk or hold a pencil, and would not be able to participate in schooling to the extent she can now. However that is with extreme distress, school refusal, meltdowns, and shutting down during her classes.
Should the NDIS Bill 2026 go ahead I am worried for my daughter’s safety, I am worried that I will go back to being suicidal. I am currently struggling with Autistic burnout and already feel like I am stuck between having to work and not being mentally capable of working, I cannot increase my hours at this stage because it risks my mental health but I cannot afford to privately fund the supports that both my daughter and myself require to survive. The whole reason why I ended up applying for NDIS supports was because I went $4000 into debt with my psychologist trying to fund the support I needed to understand my alexithymia and regulation needs with the added pressure of caring for a child with high support needs.
I simply cannot do this alone and, on an income below $45000 per annum. If we lose our supports due to me simply being autistic and my daughter having global developmental delay
then I will be forced to choose between groceries and sporadic therapies. My daughter does not fit into an easy autism lens because she has gestault language development and group therapies will not help her develop functional sentences that have to be modelled. Likewise if her therapies are only undertaken at school then I will not be getting the support to implement her therapy at home. For most parents of children with special needs we attend the therapies with our children and then implement the recommendations at home and then update the therapists of the outcomes. Additionally my child that is seen in public places such as schools is high masking and falls apart when we get home.
I am worried that the changes to the NDIS will mean that my daughter does not get the chance to access the therapies she needs to become the best version of herself and contribute to the community when she is an adult. I am worried that she will be lumped into the same special needs classes that I had in the 90s and early 2000s when we would all be taken out of our main classes and put in a classroom with 1 special needs teacher to 20 students with totally different disabilities and expected to learn something from these classes that did not support us. I am worried that like myself who did not have access to specialized therapy as a child and was instead subjected to physical, mental, and emotional abuse at the hands of my own mother because she simply did not know how to raise a child with autism, that my own daughter will fall into the void of generational trauma because I am no longer able to access the supports I need to remain regulated and mitigate the chances of me harming my child because of in built coping mechanisms.
I have already had my plan changed without communication, notification, or consultation. My plan was rolled over at the beginning of 2026 and there has been no communication to say that my plan had been adjusted until I was checking my budget last night and noticed the wording had changed, and I no longer had funding for a support worker.
I am concerned if there is a change and I am forced to go through a functional capacity test with an AI system that it will not understand that there is a fluctuation in my capabilities and that even though I work part-time that utilizes every bit of capacity I have and I come home with no ability to cook or clean and parent a child with complex medical conditions on my own.
I am incredibly high masking but it comes at an extreme cost (e.g. stress induced seizures) and I need these supports for myself and my daughter to live decent lives and participate in the world around us.
I understand that there is a budget issue but look at the way the NDIS is running first, look at the wages of the staff and the skill levels of the people making the decisions. And understand that there’s usually comorbidities that come along with these conditions that render us disabled. If you are going to reduce budgets then please make sure that there is a system that can catch us, because the community health systems can’t facilitate the care that I need. Medicare doesn’t cover occupational therapy appointments. And group therapy doesn’t work when you are Autistic and actively avoid participating in group settings. The Medicare rebate for mental health is now less than half of the cost of a psychology appointment and only 10
per year. My daughter has fortnightly psychology and speech therapy appointments and the Medicare system can’t support her properly because I can’t afford the additional costs.
If there’s anything you take away from my submission is that we are humans, and there’s a real human cost to the choices that you are making. Yes, keeping a budget is important but if it means that the suicide and family violence rates go up are you going to be ok with knowing that you are part of the system that pushed disabled people and families to the edge? While you get paid large sums of money to be elected to office, teachers like me who contribute to the future of Australia and simply want a better future for my child are having to make decisions between living and therapy. Whatever choice you make will rest on your shoulders now.