National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 495
Submission on the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 – Sections 34A and 45C
I am writing in response to the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026, particularly sections 34A and 45C. I am the parent of two children who are currently NDIS participants. Our family’s experience shows why a rigid, standardised approach to funding and support does not reflect the reality of children with disabilities, especially where needs are complex, intersecting and shaped by family circumstances.
Our oldest child was diagnosed late with ADHD and autism, after spending a full year at school quietly looking out the window and producing so little work that he could not be meaningfully assessed. He also engaged in repeated self-injurious behaviours, such as picking his fingers and nose until they bled. Because his diagnosis came so late, he missed the opportunity for early intervention. Our younger son, who is four years younger, did not pass his newborn hearing screening, but the reason was not fully investigated and he slipped through the system through no fault of our own. Just before his first birthday, he was diagnosed with profound hearing loss and was recommended for cochlear implants. Due to a systemic cochlear implant mapping error, he has not developed functional speech. Auslan is his first language, and we as a family have had to learn it while trying to catch up with him as best we can as this is the language he uses to access his education at school. His older brother has not had the same opportunity to learn Auslan, and they struggle to communicate with each other. After approximately four years without good language models, our younger son has experienced impacts on his mobility, social interactions, community participation, limits to his world view, delayed writing and reading skills and general and language deprivation. CMV was also not detected at birth, this was only identified more than 18 months later through his Guthrie card. Due to this delay, we were not offered antivirals to prevent further hearing loss.
As an NDIS participant family for nine years, I have seen providers take advantage of inflated NDIS rates through claiming ‘extra hours’ for case notes, contracts, transport and reports. I understand the need to address fraud and poor practice, and I can see how systems that do not require sufficient accountability can be exploited. However, I am deeply concerned that the response to these problems will be to further standardise supports and reduce flexibility. In our case, our children may each be individual participants, but we live as one family with interconnected needs. We do not need an “off the-shelf” autism package and an “off-the-shelf” deafness package for a child with cochlear implants. We need supports that respond to our children as individuals and to us as a family. We also do not share the same cultural or linguistic identity as our deaf child. We rely on deaf adults and small community organisations, many of which are not currently NDIS-registered, to share language, culture and understanding with our son in ways that we, as hearing parents, cannot replicate.
The impact of these needs is felt every day in our home and in the community. One child speaks and the other relies on Auslan. The older child shouts to get his brother’s attention, but of course he cannot hear him. At a recent movie outing with a school friend, our oldest spent much of the film trying to help his brother understand the dialogue, only to miss parts of it himself and leave feeling resentful. Medical appointments are rushed and less effective when we do not have an interpreter, because we are forced to translate back and forth while also trying to have an ‘adult’ conversation with the doctor. In our state there are no suitable sports or dance groups for deaf children (unless they also have an intellectual impairment). Without signing or a visual signals from classmates or teachers he has spent years working with, our son does not know when the music starts, and he cannot successfully play basketball with hearing teammates unless there is an interpreter because he cannot hear the whistle. He can play but cannot be coached to learn chess, unless he has an interpreter. His older brother has also had to miss out on things he enjoys, in order to assist his brother’s communication needs. These are not minor issues. They affect communication, safety, social inclusion, family relationships and mental wellbeing. Community participation is often one of the first
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 495
areas treated as expendable, yet it is one of the areas that matters most. We have tried a wide range of social groups, but they are often full, too expensive, or not the right fit in terms of language, communication or intellectual profile. In practice, our best fit is often mainstream activities such as dance, combined with highly specialised support, such as interpreters, assistance with fine-motor tasks, or scaffolding for physical and creative activities. That support will not look the same for every child. Generic group-based models where children are simply supervised with electronics are not meaningful support. They are a poor use of both our time and public money.
In many ways, our older son’s support needs are more hidden than his brother’s, but their social, emotional and safety needs are equally significant. Reducing children to a budget line or assuming their needs can be met through standard funding categories does real harm. We are not asking for the “best” or “ideal” care. We need care and opportunities that are equal to what we see their peers experience every day, and we cannot provide that without the NDIS. Our children’s support needs have also had a profound economic and social impact on us as parents. Neither of us are able to work in full-time paid employment. My husband works from home so he can manage school, therapy and social inclusion and transport, while I carry the work of advocacy, planning, appointments, invoices and payments. This is further complicated by having a PTSD diagnosis, as a result of our youngest son’s mapping error. I urge the Parliament to reconsider and amend sections 34A and 45C so that efforts to improve sustainability and prevent misuse do not come at the expense of children whose needs are complex, individual and deeply shaped by family, communication and community context. The NDIS must remain flexible enough to fund meaningful, individualised supports that promote communication, inclusion, safety and dignity.
The prospect of having the support our family depends on, and so carefully considered and planned, suddenly removed, is traumatic. Our children’s needs cannot simply be transferred to other services such as Deaf Connect or schools, in their current form, because those systems are not designed or resourced to provide the level of individualised support they require. We are not asking for an easier option. We are asking for a system that gives our children the chance not merely to survive, but to thrive—to grow into adults who can participate meaningfully in their communities, pursue employment, and live with dignity and independence. Without the right support at the right time, the long-term consequences will be far greater, both for our children and for the broader community.