National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1620
To the Committee,
This submission is from a full time parent carer of three young children with Autism Spectrum Disorder, Global Developmental Delay, complex medical needs, and significant developmental disability. The NDIS is not optional for our family. It is the system that enables daily safety, access to therapy, medical coordination, and basic functional development. Without it, our children would experience rapid regression, increased behavioural and medical crises, loss of essential supports, and our family would be unable to safely sustain care at home. Any reduction or weakening of the NDIS would result in immediate and severe impacts on the wellbeing, safety, and stability of our entire household.
My name is and I am writing as the parent and full time carer of my children, including my son who lives with Autism Spectrum Disorder and Global Developmental Delay, and my younger children and , who also live with significant developmental, medical, and disability needs. - I need to be very clear from the outset. The NDIS must not be removed, reduced, or weakened for—families like mine. It is not optional. It is not extra support. It is the only system that keeps our children safe and our family functioning day to day.
The people making these decisions are not living this reality. They are not the ones sitting up at night checking breathing, managing seizures, preventing injury, coordinating complex medical care, or trying to calm a child who is overwhelmed by a world they cannot safely process. We are living it, every hour of every day.
This is not something that comes and goes. This is our normal.
disability affects every part of his life. Communication, emotional regulation, behaviour, sleep, safety, medical coordination, and community access are all impacted. Something as small as a change in routine can lead to hours or days of distress. Without consistent supports, what others might see as-behaviour becomes a safety crisis in our home.
When supports are disrupted for we do not see minor setbacks. We see escalation. We see self harming behaviours. We see violent outbursts. We see a child who is not being difficult, but overwhelmed beyond what he can manage, and a family trying to keep everyone safe while everything -unravels.
lives with Global Developmental Delay and significant medical needs including seizures. His development does not move in a straight line. Skills can be gained and then lost again after illness, neurological episodes, or stress. We are constantly rebuilding things most people take for granted like-communication, feeding, movement, emotional regulation, and medical coordination between specialists and therapies. It is ongoing, and it is exhausting, but it is necessary.
is also living with Global Developmental Delay and is currently in a critical stage of early intervention. What happens for him now will shape his entire future. Early intervention is not something we can delay or replace later. It is the foundation that determines whether he builds communication,-independence, and connection, or whether those opportunities are permanently reduced.
A huge part of what has made any progress possible for all three of my children is the incredible team supporting them.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1620
All three of my children attend Canberra Children’s Physiotherapy. This is not just a service we access. This is a team that knows my children as individuals.
Each of my children works with different therapists within that service because their needs are completely different. There is no shared plan that fits all three. There is no general approach that works across the board. Every child requires their own therapist, their own goals, their own strategies, and their own way of being supported.
This individualised therapy is not a luxury. It is the reason my children are progressing at all.
Our therapists understand things that cannot be captured in paperwork. They notice when regulation is slipping before behaviour escalates. They adjust sessions around fatigue, sensory overload, and emotional capacity. They build trust slowly, and that trust is what allows real progress to happen. Without that consistency and personal understanding, my children would not be where they are today.
We also rely on other trusted clinicians, including Sylvia at CBPS for . These relationships are not interchangeable. They are built over time, through consistency and understanding. If they are disrupted, the impact is not neutral. It is immediate and visible in behaviour, regulation, and safety. - This is why proposals like “Thriving Kids” feel so frightening for families like mine. Because they assume therapy can be standardised or simplified. They assume children with complex, lifelong disabilities can be supported through general systems rather than individualised care. That has never been our experience.
Our children do not respond to systems. They respond to people who know them.
Without the NDIS, all of this disappears.
Therapy stops. Equipment stops. Behavioural support stops. Disability support and medical coordination stop. The structure that keeps our home stable would fall away. And what replaces it is not adaptation. It is crisis.
I would not be able to safely manage all three children alone. There is no informal support network that can absorb this level of care. My father has his own health conditions and cannot provide ongoing support. My sister is caring for a profoundly disabled child and is also fighting her own battles with the system. The father of my children is physically unable to provide care due to serious spinal injury. There is no safety net behind us.
So if the NDIS is reduced or removed, everything falls onto one person trying to hold together three children with high and complex needs, without the supports that currently make that possible.
That is not sustainable. It is not safe. And it is not humane.
The impact does not stop at our home. Without early intervention and consistent supports, children like mine will rely more heavily on emergency departments, hospitals, mental health services, and crisis systems. The pressure shifts, it does not disappear. It simply moves into parts of the system that are already stretched.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1620
It also forces parents out of the workforce. Not because they choose to, but because full time care becomes unavoidable. That loss of employment has long term financial and emotional impacts on families, and increases reliance on income support systems.
My children will not grow out of needing support. Their disabilities and medical complexities are lifelong. Their independence, safety, communication, disability support, and medical coordination depend entirely on the supports they receive now.
Removing those supports does not create growth. It removes the conditions that make growth possible.
I also want to be honest about what the NDIS has meant for us. It has not made life easy. But it has made life possible. It has given my children access to therapy. It has allowed them to build skills that would not have developed otherwise. It has given them stability in a life that is otherwise unpredictable and overwhelming.
And it has given our family something we desperately need. A chance to breathe between crises.
Whether my children are labelled Level 1, Level 2, or Level 3, the reality in our home does not change. They require daily care. They require supervision. They require therapy. They require medical coordination. They require safety.
I am also deeply concerned that proposed reforms may result in children being reassessed out of the NDIS despite clear ongoing need and visible developmental gains. Those gains exist only because supports are in place. Removing those supports does not preserve progress. It erases it.
Families like mine cannot be transitioned into untested or incomplete systems while the current system is what keeps our children safe every day. That is not reform. That is withdrawal of care.
I ask Parliament to understand this clearly.
The NDIS is not optional support. It is not a policy preference. It is the foundation that holds our children’s development, safety, disability support, medical coordination, and wellbeing together.
My children cannot afford disruption. My family cannot survive it