National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1817
Submission to the Senate Community Affairs Committee
NDIS Future Generations Bill 2026
My name is . I live in Sydney, NSW, and I am the mother and primary carer of two boys, 14 & 12 years old, with profound and lifelong disabilities.
My sons, have cerebellar hypoplasia, a rare neurological condition. They also live with Quadriplegic Ataxic cerebral palsy, autism level 2, severe intellectual disability, severe speech impairment, sensory processing difficulties, and significant physical disabilities. Their support needs are lifelong and affect every aspect of daily life.
For the past thirteen years, disability has shaped every part of our family’s life. Our days revolve around therapy appointments, medical appointments, school meetings, specialist reviews, equipment trials, behaviour support, communication support, mobility support, and constant advocacy. Like many families of children with significant disabilities, we have structured our entire lives around ensuring our children have every opportunity to learn, participate, communicate, and be included in their communities.
I am writing because I am deeply concerned about several aspects of the proposed NDIS Future Generations Bill 2026.
In particular, I am concerned about:
• New functional capacity reassessments from 2028 onward.
• Tougher reassessment rules and reduced review rights.
• The requirement that participants undertake all “appropriate treatments” before their disability can be considered permanent.
• Automated decision-making processes and the reduction of individual appeal rights.
My greatest concern is that these changes move the NDIS further away from understanding people as individuals and closer towards categorising people through systems, assessments, and administrative processes.
My children have taught me that disability does not fit neatly into categories. Both my boys share the same rare neurological diagnosis. They have grown up in the same family, with the same parents, many of the same therapists, and many of the same opportunities.
Yet they are very different children. Their strengths are different. Their challenges are different. The supports that help one child are not always the supports that help the other. If two children with the same diagnosis can have such different needs, then it is difficult to understand how standardised processes, broad disability categories, or automated systems can accurately determine the needs of thousands of Australians living with disability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1817
I am particularly concerned about the proposal for future functional capacity reassessments.
A functional assessment captures only a brief snapshot of a person’s life. It does not capture the years of therapy that made a skill possible. It does not capture the countless hours spent practising communication. It does not capture the effort required to maintain skills and prevent regression. It does not capture the emotional, physical, and financial burden carried by families every single day.
For my sons, progress has never been linear. Skills that many children learn naturally have taken years of intensive support, therapy, repetition, and persistence. Learning to walk. Learning to communicate basic needs. Learning to participate safely in the community. Learning to regulate emotions.
These achievements did not happen because their disabilities improved. They happened because support was available. When a child demonstrates progress, that should be viewed as evidence that support is working—not evidence that support is no longer needed.
Disability also affects far more than the person with the diagnosis.
I also have two other neuro typical sons, who love their disabled brothers deeply. They have grown up attending therapy appointments, waiting through specialist consultations, adapting family plans, and learning patience and resilience far beyond their years. Like many siblings of children with significant disabilities, they have had to make sacrifices that most children never have to consider.
The decisions made through the NDIS do not affect one individual in isolation. They shape the opportunities, wellbeing, stability, and future of entire families.
For thirteen years, while many of our friends were building careers, travelling, and planning family holidays, our family was focused on helping our sons achieve skills that many people take for granted—learning to walk, learning to communicate, and learning to participate in everyday life.
I am also deeply concerned about tougher reassessment rules and reduced review rights.
Families already spend enormous amounts of time gathering evidence, obtaining reports, attending assessments, and advocating for essential supports. No report can fully describe what daily life looks like for our family. No assessor lives with our children. No assessor sees the therapies, the supervision, the behavioural challenges, the communication difficulties, the sleepless nights, the appointments, and the countless hours of care that occur behind closed doors.
When decisions are made incorrectly, families must retain meaningful opportunities to challenge those decisions.
Review rights are not a luxury.They are a safeguard that protects vulnerable people from decisions that do not accurately reflect their needs.
I am particularly concerned about the proposed requirement that participants undertake all “appropriate treatments” before their disability can be considered permanent.
As the parent of children with a rare neurological condition, I find this proposal deeply concerning. For many rare disabilities, there is limited research, limited evidence, and often no clear treatment pathway. My sons’ condition is lifelong. There is no cure for cerebellar hypoplasia.
Therapy helps maximise independence, participation, communication, and quality of life, but it does not remove the disability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1817
Families should not be placed in a position where they are expected to endlessly pursue therapies or interventions in order to prove that a lifelong disability remains permanent.
Finally, I am deeply concerned about any move towards automated decision-making and algorithms.
Children like my disabled sons are not numbers on a spreadsheet. They are not categories. They are not data points. They are individuals with unique strengths, challenges, goals, and support needs. The most important decisions affecting the lives of people with disability should never be reduced to automated processes without meaningful human consideration and review. Every person deserves to have their circumstances assessed individually and fairly.
The NDIS has transformed my children’s lives. It has allowed them opportunities that previous generations of children with disabilities may never have had. It has helped them communicate, participate, learn, and engage with the world around them. It has given our family hope.
I understand the importance of ensuring that the NDIS remains sustainable for future generations. However, sustainability must never come at the cost of fairness, dignity, individualised decision- making, and the rights of people with disability.
I respectfully ask the Committee to recommend that:
• Functional assessments remain only one piece of evidence and never replace individualised assessment.
• Review and appeal rights remain accessible and meaningful.
• The “all appropriate treatments” requirement be removed or significantly amended to protect people with rare and lifelong disabilities.
• Automated decision-making processes never replace human assessment, transparency, and independent review.
• The NDIS continues to recognise that every person with disability is unique and deserves to be treated as an individual.
I ask the Committee to remember that behind every policy proposal is a real child, a real family, and a real future.
For my family, these proposed changes are not administrative reforms.
They are decisions that may determine whether my children continue to have the supports they need to communicate, participate, learn, and live meaningful lives.
Thank you for considering my submission.
Sydney, NSW