My name is , and I am writing as the parent of a seven-year-old daughter with Level 2 Autism Spectrum Disorder (ASD). My husband and I are both teachers, and together we are raising our two daughters while navigating the realities of disability and caring responsibilities.
I appreciate the opportunity to provide this submission because the decisions made through this Bill will directly affect families like ours. While I understand and support the need to ensure the National Disability Insurance Scheme (NDIS) remains sustainable for future generations, I am concerned that some of the proposed changes risk creating greater instability for participants with permanent disabilities and for the families who support them.
For our family, the NDIS is not a luxury or an optional service. It is the reason we are able to work, parent both of our daughters and provide our eldest daughter with the opportunity to develop the skills she needs to live a safe, meaningful and fulfilling life.
Our daughter experiences significant behavioural challenges associated with autism. These behaviours can be unpredictable and, at times, dangerous. They affect not only her own wellbeing but the physical and emotional wellbeing of our entire family.
The most valuable supports we receive are not expensive equipment or unnecessary services. They are practical, evidence-based supports that allow our family to function, including:
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Behaviour support provided by qualified professionals.
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A trusted support worker who has developed a consistent relationship with our daughter and understands how to respond safely during periods of distress.
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Professional guidance that has equipped us with strategies to manage behaviours, reduce escalation and create a more stable home environment.
These supports have not “fixed” autism, nor did we expect them to. What they have done is help us understand our daughter, reduce crises, strengthen family relationships and give us hope that she can continue developing greater independence over time.
Without these supports, our family would be in crisis.
Our family’s daily life has been profoundly shaped by the challenges associated with our daughter’s disability. During periods of significant sensory overload and emotional dysregulation, her meltdowns have escalated far beyond what many people imagine when they hear the word “tantrum.” She has experienced episodes of breath-holding to the point of turning blue, and on multiple occasions this has resulted in seizures. These moments are terrifying as parents.
Her distress can also manifest in violent outbursts towards herself and those around her, requiring immediate intervention to keep everyone physically safe, including her younger sister. Before accessing appropriate NDIS-funded behaviour support, our family lived in a constant state of hypervigilance. Every outing, every change in routine and every unexpected sensory trigger carried the possibility of a crisis.
The emotional trauma of living this way has affected every member of our family. We have experienced significant anxiety, exhaustion and carer burnout simply trying to get through each day. Our younger daughter has witnessed situations that no child should have to witness, and
our lives often revolved around preventing the next escalation rather than simply enjoying time together as a family.
One of the most difficult aspects of the reassessment process is having to repeatedly relive and justify these deeply traumatic experiences to prove that our daughter still requires support. It is emotionally draining to continually document the worst moments of your child’s life when, thanks to the NDIS, many of those moments have become less frequent.
Behaviour support, skilled support workers and professional guidance have dramatically reduced the frequency and severity of these incidents. Our daughter is safer, our family is safer, and we are no longer living in survival mode every day.
The success of the NDIS should not be measured by how many supports can be removed, but by how many families no longer have to live in survival mode. When a family’s circumstances improve because the right supports are finally in place, that should be recognised as evidence that the NDIS is working—not as evidence that those supports are no longer needed.
Both my husband and I have reduced our working hours to meet our daughter’s needs. Like many families, this decision has had significant financial consequences, but we made it because our daughter needed us.
Even with reduced work commitments, we could not continue working without the support funded through the NDIS.
The Scheme allows us to remain employed, contribute to our community and continue paying taxes while also caring for our daughter. Removing or reducing these supports would likely force one or both of us to leave the workforce entirely.
The impact would extend beyond our daughter. Our younger daughter deserves parents who have the emotional capacity to spend quality time with her, rather than constantly operating in crisis mode.
When disability supports work well, they support entire families—not just individual participants.
Concerns Regarding the Proposed Changes
The stress of reassessments
I am currently going through the reassessment process for my daughter.
The emotional burden of this process cannot be overstated.
Preparing reports, gathering evidence, coordinating appointments and waiting for decisions creates months of uncertainty. During this period, families are expected to continue parenting children with significant support needs while also carrying the fear that essential supports may be reduced or removed.
Every reassessment feels like being asked to prove, once again, that your child is disabled enough.
Autism is a lifelong neurodevelopmental disability. While support needs may change over time, the disability itself does not disappear.
Long periods of uncertainty place unnecessary stress on families who are already carrying significant caring responsibilities.
Funding uncertainty
The greatest concern for our family is not knowing whether supports that have demonstrably improved our daughter’s life will continue.
Behaviour support and consistent support workers are not optional extras. They are essential supports that keep our daughter safe, support her development and allow our family to function.
Removing these supports would not reduce our daughter’s disability. It would simply shift the burden back onto families already doing everything possible to support their children.
Lack of clarity
Families need clearer information about:
- what supports will remain available;
- how decisions are made;
- what evidence is required during reassessments;
- how participants can challenge decisions; and
- how consistency between decision-makers will be maintained. The current uncertainty creates unnecessary anxiety and makes it difficult for families to plan for the future.
Much discussion surrounding reforms focuses on strengthening early intervention.
While early intervention is an important principle, I encourage the Committee not to assume it is a complete solution.
Our family participated in early intervention for many years. We committed wholeheartedly to therapies, appointments and recommendations because we wanted to give our daughter every opportunity to thrive.
Despite this, she continues to require substantial ongoing support today.
This is not because early intervention “failed.” It is because autism is a lifelong disability, and some children will always require ongoing support regardless of how early intervention begins.
If early intervention is to become an even greater focus of the Scheme, then the quality, consistency and evidence base of those programs should also be critically reviewed. Families should not lose access to ongoing supports based on an assumption that early intervention alone is sufficient.
As both a parent and a teacher, I understand the importance of accountability for public funding. Every day in my profession I see the value of investing in supports that enable children to participate meaningfully in education and in their communities.
I support reforms that improve the efficiency and long-term sustainability of the NDIS, but sustainability cannot simply be measured by reducing expenditure. It must also be measured by outcomes.
When families receive the right supports at the right time, children are safer, parents remain in the workforce, pressure on emergency departments, hospitals and other government services is reduced, and families are less likely to reach crisis point.
In our own family’s experience, NDIS funding has not created dependence—it has created stability.
The most effective reforms will distinguish between unnecessary spending and the essential, evidence-based supports that genuinely change lives. I urge the Committee to ensure that participants, parents, carers and frontline professionals have a genuine voice in shaping the future of the Scheme.
Recommendations
I respectfully ask the Committee to consider the following recommendations:
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Grandfather existing participants so families who have built their lives around established supports are not disadvantaged by new legislative changes.
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Reduce unnecessary reassessments for participants with permanent disabilities by adopting longer funding periods where support needs are stable.
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Improve transparency around funding decisions by providing clearer explanations, more consistent decision-making and easier access to independent reviews.
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Protect funding for behaviour support, support workers and other capacity-building supports that enable families to remain together and parents to remain in the workforce.
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Undertake meaningful consultation with participants, parents and carers before implementing significant reforms. Families using the Scheme every day have practical knowledge that should inform policy decisions.
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Review and strengthen early intervention programs before shifting further emphasis toward early intervention as a primary solution.
I understand and support the need to ensure the NDIS remains sustainable for future generations. Like many Australians, I want to see a Scheme that is accountable, transparent and capable of supporting those who need it for decades to come. However, sustainability must not come at the expense of the very people the Scheme was created to support.
Families like ours are not asking for more than we need. We are asking for stability. We are asking for clarity. We are asking for confidence that supports which have demonstrably improved our daughter’s life will not be removed because of legislative reform or administrative uncertainty.
Our family has lived through years of trauma, fear and exhaustion. We have reduced our working hours, rearranged our lives and dedicated ourselves to giving our daughter every opportunity to succeed. The NDIS has not removed those challenges, but it has transformed how we are able to meet them. Through behaviour support, professional guidance and trusted support workers, our home has become safer, our daughter has become more regulated, and we as parents have been able to recover from constant carer burnout. These supports have strengthened our entire family—not only our daughter, but also her younger sister, who now has parents with greater emotional capacity to support her as well.
As both parents and teachers, we know that meaningful change happens when children receive the right support, delivered consistently, by people who understand their needs. We also know that preventing crisis is far more effective—and far less costly—than responding to it after the fact.
Our daughter does not need the NDIS because she has autism. She needs it because autism affects every aspect of her daily life. The supports she receives do not remove her disability— they give her the opportunity to live with dignity, safety and the greatest level of independence possible.
I respectfully ask the Committee to ensure that any reforms to the NDIS protect existing participants, reduce unnecessary reassessments, provide greater transparency and continue listening to the lived experiences of the families who rely on the Scheme every day. Those voices should not simply be heard—they should help shape the future of the NDIS.
Our hope is that future reforms preserve the opportunity the NDIS has given our daughter: not just to cope, but to participate, grow and reach her potential. We hope that same opportunity remains available for every Australian family who depends on the Scheme.
Thank you for considering my submission.