National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
Hello Senators,
I write to you as a concerned mother of a child who is disabled. He has Autism diagnosed at level 3. He was diagnosed at 4 and ½ years old after 2 years of waiting on the public system to get the assessment. My child was able to access early intervention on the NDIS.
What this early intervention looked like and meant for my son under NDIS. My son was able to access regular communication support with the support of a speech pathologist. My son’s speech pathologist works collaboratively with myself, my son’s school (often where he receives his support on site at the school) The school SSO follows the communication plans that my son’s speech pathologist has worked on. This is beneficial for my son as it has a holistic approach. This also means that utilising services available we are already reducing how much we claim for under NDIS. This helps myself and the school be in the best position to support my child. This support helps train myself, my partner, and the school to learn how to interact and use my sons AAC device. How to use picture prompts, timers and other strategies for emotional regulation. The emotional regulation therapy is done in conjunction with both speech pathology and the occupational therapist. This is due to how emotions present and can be felt by the autistic body.
My son was able to access regular feeding therapy with the support of a speech pathologist. My son has a limited number of foods that he will eat due to texture mostly. Pre NDIS we were seeing an eating therapy support every 3 months since my son was 3 months old at the hospital. With NDIS we were able to have that specialised therapy monthly and then fortnightly. This helped my son be open to new foods, widen the variety of foods my son will eat, smell, touch, taste. Feeding therapy is a prolonged process of food exposure gradually. It is not just the fussing eating habits of a toddler or a spoiled child. My son will not eat if there is not a food available to him that he feels is safe to him. He will then get upset if he has not eaten, but even at that stage he still will not eat what he deems to be an unsafe food. There are many reasons that many autistic people can have sensory aversion to food. The mistake that the non-disabled community often make is that it is just ‘fussy eating’. I can assure it is not. There are meltdowns, there is a genuine fear sometimes around food. My son is still not able to sit at the table with a tub of yoghurt open. He will physically move his body away from the table. This may seem trivial but until you have experienced a child refusing to eat, getting upset so much that they are past being able to eat, you will not understand. This sensory avoidance around food can also impact many autistic adults as well as other adults with different disabilities. Feeding therapy or food school as we call it allows a comfortable space for my son to explore food without any pressure of eating. The food is all supplied by myself and the therapy and travel are all that is taken from my sons NDIS plan.
My son was able to access an occupational therapist regularly to help support his cognitive ability, his regulation, toileting, holding a pencil. Pre- NDIS my son saw an OT through the state hospital system again this was irregular maybe every 4 months he was around 1 and ½ or 2 years old at the time of seeing a hospital OT. The state OT helped me apply for NDIS early intervention and helped me put my son on the autism assessment waitlist that I had been asking for a year for my son to be put on. Everyone else wanted my son to be 4 and ½ before putting him on the list. If I had listened to that my son would have been 6 and ½ or older before diagnosed. He is six now. When we got NDIS the wait time frames for an OT were at a minimum 12 months. We managed to get a regular OT for my son. The regular OT we were only able to get after going through a number of OT’s that simply were not the right fit for my son or myself. My son’s current OT explains what they are doing in sessions, why it is important/what it is trying to achieve, and if we are seeing improvement with that. I personally have been diagnosed as ADHD as and adult around the same time as my son was diagnosed with autism. I suspect that I may have autism or at least some traits of it. Due to the highly genetic component. As such I like to know why movement breaks work for my son, how it helps regulate his
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
body and mind. Why does pressure help calm or spinning help calm. My son’s OT has been fantastic at explaining this in ways I can understand and then best support my son.
My son accesses a physio monthly. This is to ensure the strengthening of his calf muscles and his flexion and extension on his foot and ankle movement. We have been able to move this from fortnight to monthly due to the progression in these areas around building muscle and with his tip toe walking. Which in case you are unaware tip toe walking is a common trait of Autistic people. Why is it important to be addressed? Because if not corrected early it can create other issues like limiting the range and motion of the calf and leg muscles as well as ankle and foot. Basically, they could potentially seize up and cause ongoing health concerns and in some cases may require major surgery to correct the toe walking.
Orthotics – My son was able to see an orthodontist to get assessed and see if orthotics in conjunction with the physio would be beneficial for him. My son had 2 pairs of orthotics that covered his calf and allowed for the movement of ankle while correcting the tip toe walking. The orthotics that covered his foot, ankle, and calf needed special shoes that were wide enough to fit the orthotic in and easy enough to take them on and off as needed. My son’s orthotics support was done in conjunction with the physio support my son has. My son can now wear orthotics that are inserts into his shoes. This is part of the progression for my son which has been made possible by his NDIS funding.
My son was able to access a AAC device on NDIS. (AAC stands for Augmented and Alternative Communication). He was able to access equipment for his eating therapy as well as equipment to assist him with his regulation. My son was able to get orthotics to help support his calf while correcting his tip toe walking, as well as the specialised shoes that go over the orthotics. (for a limited time was able to get the shoes under NDIS). The shoes are not able to get approved under the new support’s lists, as the shoes have been deemed parental responsibility as the store is online and not a NDIS equipment provider. However other children in my parent circle who also has a son with orthotics was able to get them under NDIS because they ordered through Novita. This is not costs saving this is forcing people to take the more expensive option. As the shoes I were looking at purchasing for my son were 1/3 of the costs of the Novita shoes which both address the same issue needed for the calf, ankle, and feet.
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my sons AAC device is an IPAD that we got under NDIS (before the changes) it was refurbished (not brand new) and had a hard proof case and neck strap on it and the app for communication installed. The communication app is TD snap PODD. This enabled my son to have his first back and forth conversation with me. My son does not have the communicative ability to do this with voice words only. It was a conversation about dinosaurs and what was his favourite dinosaur. The purchase of this iPad rather than another communication device which is limited to only words put on it. It that with the iPad TD snap Podd it can be edited developed and personalised to grow with my son as he grows. Not only this but he also uses another app on the iPad called ‘book creator’. This app helps my son by being able to develop and create with him social stories. This helps limit the amount of heighten anxiety that comes with change. With Autism a change of routine, of teacher, or format of the day can cause anxiety and stress. Sometimes this can be seen by regression, and behavioural changes by the autistic individual. My son can close off, disengage and has previously reverted to hitting his head on the wall or floor previously. With the aid of the story book stories, we can better prepare him for upcoming changes.
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feeding equipment – My son was able to get a learn and grow chair similar to a highchair with a footrest but able to be used for later years. This supports my son to sit in the correct position at the table so that he is able to eat safely. This chair was assessed and trialled by my son’s therapy team before the request was put to NDIS. It enables my son to be at the correct height not to far away from the table and encourages correct posture when eating.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
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Noise cancelling headphones/earmuffs – My son can often get overwhelmed by noise allowing him to have earmuff that block out the sounds has become a part of everyday life now he is at school. He has been able to slowly and comfortable participate and stay in school assemblies more. The earmuffs have assisted with being able to stay in the room at school. The headphone has helped him be able to listen to music to help regulate. However, we do tend to use the earmuffs more often. This is more a personal preference and what works for my son.
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the pressure seeking – we have gotten a t-shirt and a mattress sleeve to help with regulation and comfort. The mattress sleeve has helped my son be able to go to sleep at nighttime and get some rest. Before the mattress sheet (which is like a sleeve) my son was regularly waking up multiple times in the night and could not be relaxed enough at bedtime to sleep. This meant that he at times was still awake at midnight or waking us up at 2am. The t-shirt he has tried but the sheet sleeve for pressure that goes over the mattress if the preferred. Sometimes it will take trial and error to work out what works for people, and that is ok.
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The sensory swing – I know that this is now deemed play equipment and a parental responsibility. I will have to greatly disagree with you on that. This swing is a regular part of my son’s nighttime routine. The movement in the swing helps calm his body and mind ready for bed. This swing can help my son de-escalate his dysregulation in an easy and accessible way for him at home. I see this a regulation miracle not a piece of play equipment that your neurotypical child may get. My son uses this in conjunction with the mattress sleeve in his nighttime routine this helps calm and regulate his nervous system. I have seen my son go from a massive meltdown to being able to be calm and interact again thanks to this swing.
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Continence aids My son was one of those children that had toileting accidents all the way up to school and at school, and he still wears a nappy to bed. We are working the OT and have made great improvements, but change doesn’t happen in a day. My son was able to get mattress protectors and Connie/Kylie for when he sleeps. This helps elevate shame and minimises damage to the mattress. This means that my son can sleep comfortably knowing that his mattress does not need to be air dried out if he has an accident at night. It’s a simple change of mattress protector and kylie then back to bed.
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Nelli More recently with the purchase of the Nelli. My son is starting to make further steps towards his own independence. My son is very smart in many areas but can really struggle with basic things. Such as getting dressed, doing up buttons, opening a packet of tiny teddies. The Nelli is helping establish a routine and helping him to do the tasks as independently as he is currently possible for him to do.
The equipment that I have just listed has greatly helped my son. Many of these equipment’s are now in your list of things people on NDIS can no longer claim. This is incredibly disheartening as I have seen how much it has been a great benefit for my son. Instead of this being a short-term change as it was stated to be when it was introduced. A broken promise to the disabled community.
Now we are facing further cuts to the NDIS. This is truly disheartening and dehumanising.
My son, School, and SSO. I am fortunate my son’s school is supportive. My son does not get the funding for all the support the school is giving my son. However, my son’s school will do this to best set up my son for his education. Which I am very grateful for, but I also understand this is not sustainable. My son is currently level 7 funded at school and needs to be at a level 9. My son was on the cusp of needing to attend a special needs school/class. However, it was deemed that public school with SSO support would be able to support my son.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
The reason I mention this is the move to put more responsibility on schools with thriving kids or alternative services (which don’t exist in South Australia by the way) will only create a space where kids fall through the cracks, don’t get the support they need from the people they need it from. This in turn then means they grow up to adults who needs support because their needs were not met as a child. This will in turn put more pressure on the system, and more cost to the government. Do people outgrow autism? No, they do not. Autism is a spectrum and there will always be people that require lifelong supports. My son is deemed high support needs at level 3 currently. He may be able to go on to live a life that is full and have minimal or not support requirements as an adult. I can not be 100% sure on that. What I do know is that what we do for him now matters. What support and understanding he receives now matters. This is the time to set him up for future success. Getting him the support now is critical to his future. Autism is an interesting as you can be highly skilled in one area but need a lot of support for another. For example, my son absolutely loves maths so much so that when he first started school after his maths lesson ended, he would go to other classrooms at his school because he wanted the maths lesson to continue. His school allowed this in his adjustment period. But his deputy principal said, ‘I never thought I would have to say this about a student, but we are going to need to stop him going to other people maths class.’ Yet my son struggles to get himself dressed, he struggles to tie shoelaces, he struggles to converse in mouth words with people. (We say mouth words as his PODD words are also his voice.)
I have friends with children who are also autistic and their school experiences have been drastically different to mine. Schools are not trained equipped or serviced enough to be in a position to offer adequate support in South Australia to autistic children. Even with the introduction of the ‘inclusion officer’. The treatment of disabled children in many public schools is disgusting. This sometimes comes from the students, sometimes the teachers, and sometimes even the inclusion officer. I won’t go into that as much as those are my friends’ stories and experiences to tell not mine.
I am always tried to use my sons NDIS funds wisely, for what he needs. I have talked to NDIA workers doing my sons assessments that have not read any of his reports. They ask me questions that are very clearly answered in his reports. I am not the expert. You have the reports from the experts. I am a mother not a trained therapist. Please read the reports from our therapists.
Also, as a FYI my son is also what they consider a flight risk. What that means is he can easily run away from me or from his school. This in turn puts him in danger further due to this limited communication. This is a safety concern. Also, prior to regulation support my son would hit his head on the wall and on the floor repeatedly. So, I definitely disagree with you when it comes to regulation supports and using equipment to help aid that is proven and does work and there are studies on that that you have chosen to ignore.
What will NDIS cuts mean to myself and my family and what will it mean for the states? Myself and my husband are both working as is common with the cost of living at the moment. I work 0.9 FTE currently. I was originally full-time and had to cut back 1 day a fortnight due to needing to catch up on reports, admin tasks, communication with supports/therapies etc. for my son. This one day a fortnight does not remotely cover the actual amount of time I spend on all those things. As well as being present and available for my son’s feeding therapy sessions which are done within our home. Food school as we call it.
I can often be up until midnight or after some nights reading over emails, school, therapy communications. My son can not tell me about school, what happen or how his day went. His communication is no where near that capacity.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
I have been able to get 10 hours of support coordination that I had to fight for when I was at breaking point due to the pressures and expectations placed on me. Everyone saw a ’a good job.’ What they didn’t see was the constant breakdowns that mental load of it all getting too much. This was due to the unseen labor that it takes to raise a disabled child. Mentally I needed a break. But the advocacy never stops when your child is disabled. It is a fight every day of your and their existence. You fight to be taken seriously when you notice that they need to be assessed. You fight the wait list to get the diagnosis. You get the NDIS you fight for the right support for your child. You fight to find the time to communicate with the supports/therapies for your child. You fight for the daycare to actually use and have accessible the AAC device, you fight for the schools to have meetings to listen to why your son needs support, you fight to prove why your son still needs NDIS, and you keep fighting to simply get what your child needs to live a normal life. Why because you know your child deserves to have the care they require, the support they require, and the education that they have the right to.
I have reached out to carers SA. I was able to have carers’ break through them briefly. This helped to reset my nervous system; however, this took me 2 years to achieve. Let me tell you it is a challenge to show up everyday for your disabled child when you are near breaking point due to the hurdles and barriers you face everyday just to get your child the support hey need and deserve.
If my son was to lose access to NDIS. My son would no longer be able to see any of the specialist listed above. Which all currently fall under his capacity building supports funding. He would regress with behaviours. Back to hitting his head on the walls and floors. He may also regress in other areas as well, such as toileting, eating, his movement. We would not be able to financially support all those therapies independently. As I in turn would need to quit my 0.9FTE to best support my child. Without therapy for my child, I will not be able to work. I will be forced into the home as I would then need to become the untrained therapist for my child. My child’s needs will not go away. The responsibility will shift to myself and will increase my mental load and burden. It will turn into unpaid labor and that unpaid labor may sound good to you right now. But what you forget is that unpaid labor still comes at a cost. A cost to that parent’s income, and in turn the household income (this also affects the collective tax that you get from that household), a cost to that parents’ health, a cost to their own regulation, and sometimes even a cost to the parent’s physical health. These costs flow on to other State departments they do not disappear. The needs and the costs do not simply go away because of a funding cut. The needs are simply shifted to states and families in a time where the state systems and families are already barely keeping their head above water.
It is more costly for a hospital bed then to be supported at home. Yet the changes already made to NDIS have seen more people on NDIS in hospitals because they have lost access to funding.
My son’s regression will be seen in his education, his toileting, his ability to communicate, ability to take turns, ability to learn about new food. This in turn will all impact on him long term. In terms of him being able to participate in society. In terms of him being able to become as independent as possible. This is a step backwards that will set him up for failure. I can not see a future for my son where he is able to be independent when we are having discussions on who is disabled enough, talking about being supported by other programs that are not available and from the little information that we have on these programs we can see that they are a built in a one size fits all model of care. Not person centred or taking into considerations of the disabled person.
My son does not get any social and community support due to his age as this is all deemed a parental responsibility for my son’s age. This would be of assistance though when he grows to teenager years (that is if he still requires support at that age- there is a bit of unknown with this currently with autism and how much progress he can make now.) As all teenagers want to improve independence and have
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
time away with their peers not with mum and dad. This is a normal developmental stage that helps build independence.
When my son is older. My son when he is older may need minimal support or no support there is no telling at this stage. However, I want him to have that option of support there if he needs it. I am fearful of what my son’s future will look like now living in Australia. I am scared as the talk of Government and media is that of a burden and unworthy of the supports he needs. I have to say I am so sick and tired of having to prove that my son is disabled enough. I am sick of having to prove that he is a human being worthy of life. I am sick of having to explain that my son’s needs are valid. I am sick and tired of the Australian Government dehumanising people.
This bill is disgusting. You also want to fine people for not picking up a phone. You want more people working and being independent. Well guess what when you are working there are far and few workplaces that will let you answer that phone while they are at work. You are making it harder for people to work with all these changes. Give us the ability to call you back after you leave a message at least and be honest about what the call is about. Don’t tell us it is just to check in but it is really about a plan review.
I am not comfortable claiming one personas disability is valid while another is not very dangerous ground. Only acknowledging one disability and not how another on top of it may impact the initial disability is very dangerous and removes the holistic approach. It may cost not only lives but also cost the Government more money in the end, as the costs will increase but not viewing the issue holistically.
You the Government of Australia have not given the disability community enough information or answered any of our concerns with valid concrete answers. There are too many grey areas that you want to fill in after the law has passed. I am sorry but no! not in my name will you pass this dehumanising disgusting bill! The assessment tool using the ‘automated system’ is incapable of understanding the nuance of disability. I say this as I prior to having my child worked within disability. I saw pre-NDIS adult disability support and after. I saw the impact NDIS had on many lives in a positive way. I also saw the frustration when lifelong disabilities had to be proven repeatedly at a waste to the taxpayer. There are many ways we could look at cutting costs. one area would be around asking people with lifelong disabilities to yearly spend thousands on their NDIS plans just to state their lifelong disability is still a disability.
Many lives are being put at risk with this bill. The participants, the families, the workers. Guess what funding cuts means, often for workers unsafe ratios. What do unsafe ratios contribute to? Harm to the participant and harm to the worker. I am sorry but this bill will be a stain of discrimination and dehumanisation if this bill is to be passed.
I have a genuine fear for all disabled peoples if this law is to pass as it will mean the segregation and dehumanisation of the disabled community is all happening again. This was what people fought to change when they introduced the NDIS. When we shut down the institutions. We wanted disabled people in society, in the community. Not shut away behind doors and shunned.
I often hear while out in community ‘there wasn’t this much autism back in my day’ from older people. The reason we see more of it now is people are allowed to be themselves; we know more about the neurology itself, and they aren’t being locked away into institutions and hidden from the world. There is a highly genetic component to Autism, and many adult women are finding out that they have autism in their adult lives. This is due to us now knowing more about the different presentations of
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2257
autism then we previously had for many years. It was originally only thought to impact young boys. However, we now know this not to be the case. It is a lifelong disability and impacts on both male and female peoples.
Kind regards