National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
Submission Regarding Proposed Changes to NDIS Legislation
Introduction
My name is , and I am the parent and primary carer of my son, , a five-year- old child living with Autism Spectrum Disorder (ASD) Level 3 and suspected ADHD.
This submission reflects our family’s lived experience navigating the National Disability Insurance Scheme (NDIS), particularly in the context of escalating support needs, regression, and the increasing challenges families face in accessing appropriate and sustainable supports.
While the NDIS has, at times, enabled life-changing interventions for , our recent experience highlights serious systemic concerns regarding funding reassessments, internal review processes, and the broader direction of proposed legislative changes. I am deeply concerned these changes will further disadvantage children with complex developmental disabilities and create long-term consequences not only for families, but for education systems, healthcare systems, workplaces, and the broader Australian community.
This submission focuses on:
● the impact of reduced therapeutic supports despite increased needs; ● the failure to adequately assess risk of regression; ● the growing trend of redistributing existing funding rather than genuinely responding to evolving disability needs; and ● the likely long-term consequences of proposed legislative reforms on children requiring intensive, ongoing support.
’s Journey and the Importance of Early Intervention
was diagnosed with ASD Level 2 in 2022. Like many families, we entered the disability system frightened, overwhelmed, and determined to do everything possible to support our child’s development.
Following diagnosis, engaged in:
● Occupational Therapy (2022–present) ● Speech Therapy (2022–present)
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
Both interventions have been highly effective. Over time, they supported improvements in communication, sensory regulation, emotional understanding, and participation in daily life.
In 2023, underwent hearing testing through Sydney Children’s Hospital audiology services, which confirmed hearing within normal range. That same year, a sleep study identified moderate sleep apnoea, resulting in a tonsillectomy and adenoidectomy.
also accessed behaviour therapy between 2023 and 2024. While we were hopeful this support would assist him, it was considerably less effective than other therapies and funding was ultimately not continued.
In 2024, commenced neurotherapy, which has been one of the most effective interventions we have accessed to date.
Despite consistent intervention and intensive parental involvement, experienced significant regression throughout 2025. His diagnosis was subsequently updated to ASD Level 3 with suspected ADHD, accompanied by severe emotional dysregulation, aggression, impulsivity, and behaviours posing significant risks to both himself and others.
The severity of his support needs was formally recognised through his offer of placement in a public school autism support unit for kindergarten in 2026.
However, despite the education system recognising his need for intensive support, our local after-school care provider declined to accept due to his requirement for one-to-one supervision.
This experience reflects a broader reality faced by many families: children with significant disabilities are increasingly excluded from community participation unless families themselves privately absorb the burden of support.
Funding Changes Following Regression and Escalating Needs
In late 2025, ’s existing NDIS plan was rolled over. At that time, we submitted a Change of Circumstances request due to his escalating behaviours and increased supervision requirements.
Specifically, we requested support worker funding to allow to safely access community settings and participate more safely in everyday activities.
The NDIA ultimately revised ’s plan and approved:
● support worker funding; and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
● behaviour support funding.
However, this was not achieved through recognition of increased need or additional investment.
Instead, approximately 40% of ’s existing therapy funding was removed to offset the cost of these new supports.
As a result:
● ’s therapies reduced from approximately three hours per week throughout 2025 to approximately two hours per week under the revised plan; ● our family was forced into choosing between therapeutic intervention and basic safety supports; ● ’s developmental needs became deprioritised in favour of crisis management.
At internal review, the NDIA declined to acknowledge that therapy funding had effectively been reallocated into behaviour support categories. This process created the appearance of increased support while functionally reducing access to therapies that had consistently demonstrated meaningful benefit.
This approach fundamentally penalises children for regression.
When a child’s disability intensifies, the response should not be to redistribute existing supports in a manner that reduces access to interventions proven to maintain or improve functioning.
Instead, the current system increasingly appears focused on cost redistribution rather than genuine needs assessment.
Failure to Consider Regression and Long-Term Outcomes
One of the most concerning aspects of our experience has been the apparent failure to adequately assess the risk and consequences of regression when making funding decisions.
Children with autism and developmental disabilities do not progress in a straight line. Development can fluctuate significantly during periods of transition, stress, growth, illness, environmental change, or reduced support.
For , reduction in therapeutic access occurred precisely at the point his needs escalated most significantly.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
This raises serious concerns regarding the proposed legislative changes currently under consideration.
Based on our experience, there is a real risk these reforms will:
● further narrow what is considered “reasonable and necessary”; ● reduce flexibility in responding to changing needs; ● increase barriers to accessing effective therapies; ● incentivise short-term cost containment over long-term outcomes; ● increase reliance on behavioural crisis responses rather than preventative supports.
Children like often require one-to-one support across most environments to participate safely and meaningfully in education and community life. Restricting access to therapies and support workers does not eliminate these needs. It simply transfers the burden elsewhere — onto families, schools, emergency systems, and already overstretched healthcare services.
Broader Impacts on Families and Society
The impacts of these decisions extend far beyond individual NDIS plans.
Families caring for children with complex disabilities are already operating under immense pressure. Many parents reduce work hours or leave employment entirely due to the absence of appropriate support options. Financial stress compounds rapidly alongside increasing medical, therapeutic, housing, and cost-of-living pressures.
For carers, the consequences include:
● chronic burnout; ● mental health deterioration; ● social isolation; ● financial instability; ● reduced workforce participation.
For children, inadequate support can result in:
● increased behavioural escalation; ● educational exclusion; ● reduced community participation; ● worsening mental health; ● long-term dependence on crisis systems.
These outcomes carry substantial long-term economic and social costs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
Reducing early intervention and therapeutic supports may create short-term budget savings, but it risks generating far greater long-term expenditure across:
● health systems; ● mental health services; ● special education; ● emergency services; ● child protection; ● welfare systems.
The impacts of these legislative changes will not be temporary. They will be felt for decades.
Recommendations
I respectfully urge the committee to consider the following recommendations:
- Protect Core Therapeutic Supports
Therapies that demonstrate functional benefit should not be reduced to fund behavioural or supervision-related supports. Children with escalating needs require both.
- Require Assessment of Regression Risk
NDIS decision-making processes should formally assess the likelihood and consequences of regression when reducing or altering supports.
- Improve Transparency in Funding Reallocations
Families should receive clear, transparent explanations when funding is reclassified or redistributed between support categories.
- Recognise One-to-One Support as Essential Participation Support
For many children with Level 3 autism and significant behavioural challenges, one-to-one support is not optional — it is fundamental to safe participation in education and community life.
- Prioritise Long-Term Outcomes Over Short-Term Savings
Legislative reforms should be evaluated against long-term social and economic outcomes, not solely immediate expenditure reductions.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2181
- Reduce Administrative and Review Burdens on Families
Families already managing high-care responsibilities should not be forced into constant advocacy, reassessment, and appeals simply to maintain critical supports.
Conclusion
The NDIS has the capacity to profoundly improve the lives of disabled Australians when it delivers timely, evidence-based, and appropriately responsive support.
We have seen firsthand how therapies enabled to communicate more effectively, regulate emotions, participate in learning, and engage more safely with the world around him.
We have also experienced how quickly progress can become fragile when support systems prioritise redistribution and restriction over genuine need.
Children like deserve the opportunity to reach their potential with dignity, safety, and appropriate support. Families should not be penalised because their child’s disability becomes more complex.
I urge the committee to carefully consider the lived experiences of families navigating these systems every day and to ensure proposed legislative reforms strengthen — rather than weaken — the supports available to Australia’s most vulnerable children.