National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1008
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
1. Introduction
I make this submission as the mother of twin boys who are participants in the National Disability Insurance Scheme due to diagnosis of Autism Spectrum Disorder with significant functional impairment and high support needs.
I also make this submission as someone who works professionally within a legal and regulatory environment and understands the importance of accountability, sustainability and proper governance of public systems. I support measures aimed at protecting the long-term viability of the NDIS and addressing misuse of Scheme funds. However, I am concerned that aspects of the proposed amendments risk disadvantaging children with genuine and complex disabilities.
My sons are bright, loving and capable children. They are also children who require substantial day-to-day support to participate safely in school, community settings and family life. The supports they receive are not a luxury, they are what allow our household to function and my boys to access the world in a safe and meaningful way.
2. Functional Capacity and Autism 2.1. One of my concerns relates to the increasing focus on functional impairment assessments and the tightening of eligibility and funding thresholds. Autistic children do not always present consistently. My boys’ functioning can vary dramatically depending on sensory load, fatigue, changes to routine, transitions, emotional regulation and the demands placed on them that day. They may appear regulated for a short period in a structured setting, but that presentation often reflects the amount of support, preparation and management occurring around them rather than an absence of disability. 2.2. There is also a risk that families who have spent years engaging in intensive therapies and supports may effectively be penalised because their child appears more functional than they otherwise would have been without those interventions.
Autism is lifelong. Supports can improve quality of life and functional capacity, but they do not remove the underlying disability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1008
2.3. I strongly encourage the Committee to ensure: ● Assessments are not conducted using administrative staff applying a matrix - but rather proper regard is given to expert evidence to conduct assessments, perhaps the committee could consider a system of requiring treating doctors to complete forms indicating functional impairment (as is used by Services Australia in determining the allocation of carer allowances/payments) ● Parent evidence is given substantial weight; and ● Reassessments do not create unnecessary instability for children already established within the Scheme.
3. “Value for Money” and Sustainability Measures 3.1. I understand and support the need for the Scheme to remain financially sustainable. However, I am concerned about the practical effect of introducing stronger “value for money” considerations into individual funding decisions. 3.2. For many autistic children, consistent early supports are what prevent more serious and expensive issues later. This is one of the stated aims of the scheme… invest early - improve school attainment, enhanced employment prospects and ultimately reduced need for support. 3.3. Additionally supports such as therapy, behavioural assistance, support workers and respite often reduce family crisis, school disengagement, behavioural escalation and mental health deterioration. Reducing those supports may appear financially efficient in the short term but will increase long-term social and economic costs. 3.4. Families caring for children with high support needs already absorb enormous unseen pressure. Many parents reduce work hours, decline career opportunities or experience significant burnout trying to coordinate therapies, appointments, school issues, behavioural incidents and daily regulation needs. Most days feel less like ordinary parenting and more like running a small disability service from home while also trying to maintain employment and family stability. I am concerned that overly rigid funding approaches may fail to appreciate the reality of what families are managing behind closed doors.
4. Framework Planning and Assessments 5. I also have concerns regarding the proposed framework planning model and increased reliance on standardised assessment processes.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1008
6. I believe any assessment framework must include: ● assessors with appropriate autism expertise - medical professionals should be completing paperwork. ● genuine consideration of longitudinal evidence; ● recognition of parental observations; ● transparent review mechanisms; and ● safeguards against formula-based or purely administrative reductions in support.
7. Administrative Burden on Families 7.1. I also ask the Committee to consider the cumulative administrative burden already carried by families of disabled children. Managing NDIS plans, therapy coordination, school communication, support workers, reports, invoices and reviews is already extremely time-consuming. Additional compliance and administrative complexity will disproportionately impact the very families the Scheme is intended to support. 7.2. Families should not need legal, financial or advocacy expertise simply to maintain essential supports for their children.
8. Review and Appeal Rights 8.1. I am also concerned about the practical effect of reforms which reduce transparency or limit meaningful review pathways for participants and families. For families of children with significant disabilities, NDIS decisions are not abstract administrative outcomes. They directly affect a child’s ability to access therapy, maintain school participation, regulate behaviour, safely access the community and remain supported within the family home. 8.2. Where decisions are made that reduce supports, alter funding categories or determine that particular supports are no longer “reasonable and necessary”, families must have access to clear, accessible and independent review mechanisms. I am concerned by any framework which has the effect of limiting appeal rights, narrowing review pathways or placing greater reliance on internal administrative decision-making without proper external oversight. 8.3. In practice, many families already experience the review process as extremely difficult and resource-intensive. Parents are often required to obtain multiple specialist reports, navigate complex procedural requirements and advocate repeatedly while simultaneously caring for children with high support needs. Families without financial resources, legal knowledge or advocacy support are at significant disadvantage. 8.4. Independent merits review is an essential safeguard in any administrative system exercising decisions of this magnitude. Without effective review rights, there is a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1008
real risk that incorrect or overly restrictive decisions will remain unchallenged simply because families lack the capacity, time or resources to contest them. 8.5. My own children experienced two external reviews in the early years of their plans, the first resulted in 5 x the funding originally granted by the agency and the second in 8 x the funding originally granted. Critically this was early intervention. Without the review rights under the previous legislation my beautiful and capable boys would not be where they are today. 8.6. I strongly urge the Committee to preserve accessible external review rights and ensure that participants retain meaningful procedural fairness protections under the amended legislation. Australians believe in fairness at our core - and legislation which arbitrarily limits an individual participants right to appeal isnt fair. I am most strongly opposed to the unchecked exercise of governmental power, and urge the committee to ensure a strong review system through the Administrative Reviews Tribunal. - 9. Conclusion
I support sensible reform that protects the integrity and future sustainability of the NDIS. However, I urge the Committee to ensure that these reforms do not narrow access or reduce flexibility for children with genuine and substantial disabilities.
The NDIS has allowed my boys to participate more safely and meaningfully in daily life. It has also allowed our family to remain functional during periods that would otherwise have become unmanageable.
I respectfully ask the Committee to ensure the legislation remains sufficiently flexible, evidence-based and humane to recognise the lived reality of families raising children with significant developmental disabilities.
Thank you for considering this submission.