Submission 945 - Supplementary Submission
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION
COMMITTEE
Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill
Submitted by: An NDIS Participant’s Parent (Victoria)
May 2026
- Introduction I am the mother of a son who is almost two years old and has a diagnosis of global developmental delay. He has been on the NDIS for less than a year. I am writing this submission to share what the Scheme has already meant for my son and my family, and to explain why I am frightened about what these proposed amendments could take away — not just now, but at the most critical period of his development.
My son is non-verbal. He struggles with communication, self-regulation, and physical coordination. He requires constant supervision and care. He cannot currently attend childcare. I am his primary carer, which means I am not able to work. My partner carries the full financial weight of our family.
I am not a policy expert. I am a mother who is watching her son work hard every week with his therapists, celebrating every small step forward, and living with the fear that the support underpinning that progress could be pulled away before the window for meaningful change has closed.
- What the NDIS Has Already Meant for My Son Since accessing the NDIS, my son has been receiving occupational therapy and speech therapy. His progress has been slow — global developmental delay does not resolve quickly — but it is real. Each small milestone matters enormously to us, and we know that without consistent, funded early intervention, those milestones would be much harder to reach.
Without NDIS funding, the volume of therapy my son needs would be completely out of reach for our family financially. We already pay out of pocket for paediatric appointments and physiotherapy because these are not covered by the Scheme. We do this because we understand the urgency of early intervention. But there is a limit to what we can absorb. The NDIS is not a bonus — it is what makes the difference between my son receiving the intervention he needs and going without.
Every week of therapy during these early years is an investment in the rest of his life. We cannot get this time back.
Submission 945 - Supplementary Submission
- The Daily Reality of Caring for My Son I want the Committee to understand what our daily life looks like, because I think it is easy to read words like “global developmental delay” and not fully grasp what that means for a family.
My son needs help with everything. He cannot communicate his needs verbally. When he is distressed or overstimulated, he struggles to regulate his emotions and his behaviour. He is physically clumsy and requires close supervision to keep him safe. He is also very loud — not out of defiance, but because noise is how he expresses himself — and sustaining that environment hour after hour, day after day, is genuinely exhausting.
I love my son completely. But I want to be honest: this is hard. I am tired. I am isolated at home while my peers are working or socialising. My partner is under enormous financial pressure. Our other family relationships are stretched. I am not sharing this to seek sympathy — I am sharing it so the Committee understands what is at stake when we talk about “informal supports” and the capacity of families to simply absorb more.
We are already at our limit. We are already doing everything we can. What we need is not to be asked to do more — we need the Scheme to hold its promise.
- The Financial Impact on Our Family Because my son cannot access childcare — his needs are too complex and his communication too limited for a standard childcare setting — I am unable to return to work. This is not a choice I have made lightly. It is a direct consequence of his disability and the current absence of appropriate alternative care options.
The loss of my income places significant pressure on our household. There are things we cannot afford that we should reasonably be able to provide for our family. My partner works as hard as he can, but one income is not enough when we are also funding therapy, paediatric appointments, and physiotherapy out of pocket.
I raise this because any reduction in NDIS funding, or any additional gatekeeping that delays or limits my son’s access to supports, does not just affect my son. It affects our entire family’s financial security, our relationship, our mental health, and our ability to care for him sustainably over the long term.
- Early Intervention Cannot Wait — and the Bill Threatens to Make
It Wait
The science on early intervention for children with developmental disability is clear and consistent: the earlier intervention begins, the better the long-term outcomes. The brain is at its most plastic in the first years of life. The window we are in right now — while my son is not yet two — is one of the most important periods of his entire development. Once it closes, it does not reopen.
Submission 945 - Supplementary Submission
I am deeply concerned that several elements of this Bill could delay, restrict, or complicate access to early intervention supports for children like my son.
The proposal that participants must first try “all appropriate treatments” before accessing NDIS support is particularly alarming in the context of a young child with a developmental condition. We are already seeing a paediatrician and a physio privately. We are doing everything we can. But treatments and therapies for developmental delay take a long time to show results — months, sometimes years. Requiring families to demonstrate that treatments have not worked before accessing support means that the precious early years slip by while bureaucratic requirements are being satisfied.
Time is the one thing we cannot get back. Every month of delay in early intervention is a cost my son may carry for the rest of his life.
I ask the Committee to consider very carefully whether a “treatments first” requirement is appropriate for very young children with developmental disability, where the evidence strongly supports immediate, intensive, and sustained early intervention from the moment of diagnosis.
- Stricter Eligibility Criteria Could Lock Young Children Out of the
Scheme
My son is not yet two years old. His developmental trajectory is still unfolding. The extent of his long-term support needs is not yet fully known — not because his disability is in doubt, but because he is a baby, and development takes time.
I am concerned that stricter permanence or eligibility criteria could create a situation where children like my son are required to “prove” the severity or permanence of their disability before access to support is granted — at exactly the age when that proof is hardest to produce and the need for support is most urgent.
Global developmental delay in a child under two is, by its nature, a diagnosis that involves uncertainty about the future. That uncertainty should not be used as a reason to withhold support. If anything, it is a reason to invest in intervention now, when the potential for positive change is greatest.
I ask the Committee to ensure that eligibility criteria explicitly protect the right of very young children with developmental conditions to access early intervention supports without needing to demonstrate permanence of disability at an age when that assessment is neither meaningful nor fair.
- Automated Decision-Making Cannot Understand My Son I am alarmed by the prospect of automated systems playing a role in determining what supports my son receives. My son is not a data point. His needs are specific to him — shaped by his particular presentation, his family context, his communication style, his sensory profile, and the individual goals we are working towards with his therapists.
Submission 945 - Supplementary Submission
Global developmental delay does not look the same in any two children. What works for one child may not work for another. The therapy goals we are pursuing with my son have been developed carefully, over time, through observation and professional assessment. No algorithm can replicate that understanding.
I am also conscious that my son cannot advocate for himself. He cannot speak. He cannot explain his needs to a computer system or correct an error in an automated assessment. That makes it even more important that the humans making decisions about his supports are skilled, attentive, and genuinely engaged with his individual circumstances.
I ask the Committee to recommend that automated decision-making tools never be used as the sole or final determinant of a child’s plan, and that families always have the right to a full human review.
- Families Cannot Be Expected to Fill the Gaps I am concerned that the Bill increases, either explicitly or implicitly, the expectation that families will provide informal support before or instead of funded NDIS supports. I want to address this directly.
I am already providing an extraordinary level of informal support. I have left the workforce entirely. I am my son’s primary carer, therapist’s assistant, advocate, and constant companion. I do this willingly, out of love. But I am one person, and I am not a trained disability support professional.
If the expectation grows that families like ours should absorb more before the NDIS steps in, the consequences will not be abstract. They will be felt in the health and wellbeing of carers who are already stretched, in relationships that fracture under pressure, and in children who receive less support than they need because their parents have nothing left to give.
Looking ahead, I am also thinking about what happens as my son grows. If he is unable to attend mainstream school, I will need support to care for him at home. I will need respite — not as a luxury, but as a necessity for sustaining our family. And I hope that at some point I will be able to return to work, to contribute to our family financially and to my own sense of self. None of that is possible if the Scheme retreats and families are expected to fill the void.
- Other Government Schemes Cannot Replace What the NDIS
Provides
I understand that the Bill seeks to ensure participants access supports through other government systems before turning to the NDIS. In principle, I understand the logic. In practice, for a family in our situation, there is no other system that can provide what my son needs.
Early childhood development services are valuable, but they are not designed for children with complex disability. Waiting lists for public services are long. The
Submission 945 - Supplementary Submission
intensity and individualisation of therapy that my son needs is simply not available through mainstream systems. Directing families like ours to those systems first will not meet our needs — it will delay them.
I ask the Committee to ensure that the Scheme’s relationship with other government services is complementary, not used as a mechanism to shift costs onto families or onto systems that are not equipped to bear them.
- What I Hope For My Son — and What the NDIS Makes Possible I want to end this section of my submission with something that is not about fear, but about hope.
I hope that my son, because he has been given access to meaningful early intervention during the most critical window of his development, will be able to live to his fullest capacity. I do not know yet what that looks like. I do not know how much his communication will develop, how much his coordination will improve, or what his long-term support needs will be. But I know that what happens in these early years will shape the rest of his life.
I hope that the NDIS continues to support him as he grows — that if he cannot access mainstream schooling, our family will have the support we need. That I will have access to respite so that I can sustain myself as a carer. That I will one day be able to return to work, even part-time, and contribute to our family and community in a meaningful way.
These are not unreasonable hopes. They are the hopes that the NDIS, at its best, was designed to make possible. I ask the Committee to protect that vision.
- Recommendations Based on my experience as the parent and primary carer of a young child with global developmental delay, I respectfully ask the Committee to recommend:
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That early intervention funding for young children with developmental disability be explicitly protected, and recognised as time-critical and irreplaceable
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That the requirement to try “all appropriate treatments” first not apply to very young children with developmental disability, where early and immediate intervention is evidence-based best practice
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That eligibility criteria not require young children to demonstrate permanence of disability at an age where developmental trajectories are still unfolding
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That automated decision-making never be the sole or final determinant of a child’s plan, with full human review always available to families
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That the Bill not increase informal carer expectations without robust individual assessment and recognition of each family’s actual capacity
Submission 945 - Supplementary Submission
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That referral to other government services not be used to delay or deny NDIS supports that those services are not equipped to provide
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That respite and carer supports be recognised as essential — not optional — components of sustainable family-based care
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That parents who are unable to work due to their child’s support needs be considered in planning, with a pathway toward workforce participation as part of the Scheme’s goals
- Conclusion My son is almost two years old. He is working hard. His therapists are working hard. I am working hard. Every week, we show up and we try, because we know that this time matters more than any other time in his life.
The NDIS is what makes that possible. It is what stands between my son and a future shaped by missed opportunity. It is what stands between our family and financial collapse. It is not a generous extra — it is a fundamental support that allows a vulnerable child to have a fair chance.
I ask the Committee to think about children like my son when considering these amendments. He cannot speak for himself. He cannot submit his own evidence or advocate for his own needs. That is why I am here, writing this.
Please do not close the window while it is still open.
Submitted anonymously by a parent and carer of an NDIS participant, Victoria May 2026