National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1382
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Parents of 17 year old participant in Tasmania.
Introduction
We are parents and primary carers of our son, a 17-year-old living in , Tasmania. Our son has a complex profile of permanent, lifelong disabilities including Autism Spectrum Disorder (Level 2 for social communication, Level 3 for restrictive and repetitive behaviours), ADHD, Specific Learning Disorders (dyslexia and dyscalculia), an emerging psychosocial disability arising from complex trauma, and physical challenges including hypermobility and low muscle tone. These diagnoses were formally confirmed in psychological and occupational therapy assessments completed in 2025 and early 2026.
We have been active participants in the NDIS since 2022 and have previously engaged in proceedings before the Administrative Appeals Tribunal regarding our son’s support needs. We are making this submission as parents who have lived the reality of navigating the NDIS for a child with high and complex support needs, and who have deep concerns about what the proposed amendments to the NDIS Act would mean for families like ours.
We want to be clear from the outset: the NDIS has changed our son’s life. With the right supports in place, he is attending school, his behaviours of concern are reducing, and for the first time in years, he and our family have hope. This Bill, as we understand its implications, puts that progress at risk.
What the NDIS Means to Our Family
Before our son had adequate NDIS supports, our home was in crisis. Violent and destructive episodes were a regular feature of family life. Our son refused school entirely. He was self-harming frequently, expressing suicidal ideation, and had developed dissociative episodes — a condition so severe that he created a separate identity for himself that he called “Conner.” As his parents, we were both in treatment for depression and anxiety caused by the relentless caring burden. His mother scored 56 on the formal Carer Burden Scale — a score that falls in the range of severe burnout.
With the right NDIS-funded supports now in place — support workers, behavioural therapy, psychology, and occupational therapy — our son has made measurable progress that is clinically documented. His dissociative episodes have ceased. He is attending school. His behaviours of concern have reduced significantly. He is participating in community activities for the first time. These changes are not accidental. They are the direct result of consistent, funded scaffolding by skilled support workers who understand his disability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1382
Without the NDIS, our son would not be functional. And without the NDIS continuing to fund the supports he needs, he risks rapid regression.
Our Concerns About the Proposed Changes to the Definition of “Permanence”
One of our most significant concerns relates to the proposed changes to how permanence of disability is defined under the NDIS Act.
Under the proposed amendments, participants may be expected to exhaust all “available” treatments before their disability can be considered permanent and their eligibility confirmed. Critically, a treatment may be deemed “available” even if it is financially out of reach or not accessible in the participant’s geographic area.
This is deeply concerning for a family in our situation, and we believe it will harm many families like ours, for the following reasons:
• Our son’s disabilities are neurodevelopmental and permanent. Autism, ADHD, dyslexia, and dyscalculia cannot be “treated” into non-existence. The goal of intervention is not cure — it is capacity building and quality of life. Requiring families to pursue treatments before accessing supports misunderstands the nature of neurodevelopmental disability entirely. • We live in Launceston, Tasmania. Access to specialist services is already significantly limited compared to major cities. We have struggled for years to find speech pathologists, psychologists, and occupational therapists with expertise in autism and trauma-informed practice. If treatments are deemed “available” based on theoretical rather than practical access, participants in regional and rural areas will be disproportionately harmed. • The financial burden on families under this framework would be enormous. We are already working full time to recover from financial damage caused by our son’s impulsive purchasing — a direct manifestation of his disability. We cannot afford to privately fund years of specialist treatments in the hope that this might satisfy a bureaucratic threshold before NDIS funding is confirmed. • This change would create a cruel paradox: the families who most need NDIS support — those with the least capacity to privately fund treatment and the least access to specialists — would face the highest barriers to proving eligibility.
The Impact of Proposed Cuts to Capacity Building and Community Participation Supports
We understand that the Bill also includes measures that would further restrict access to capacity building and social and community participation supports. For our son, these supports are not optional extras. They are the mechanism through which his independence is being built.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1382
Our son’s Occupational Therapist, has documented that without consistent, skilled support workers, our son WILL return to social withdrawal, school disengagement, unsafe behaviours, and self-harm. This is not a prediction — it is what happened before adequate supports were in place. The OT assessment notes explicitly that our son’s improvements in adaptive functioning are directly attributable to his support team, and that these improvements are not grounds to reduce funding, but evidence that the model is working.
If capacity building supports are cut or made harder to access:
• Our son will not develop the independent living skills he needs to transition into adulthood • His chances of gaining and sustaining employment will be severely reduced • His mental health will deteriorate, increasing the likelihood of crisis presentations, emergency services involvement, and acute mental health care • The burden on us as informal carers will become unsustainable — and when informal carer networks collapse, the long-term cost to the NDIS and to other systems is far greater than the cost of prevention
Our son is now 17. He is approaching the most critical transition of his life: from school into adulthood and employment. Research consistently identifies the years between 15 and 25 as the most formative for building long-term independence in people with disability. Cutting or restricting his supports now, at this exact moment, would be a false economy with devastating lifelong consequences.
Concerns About Transparency and Consultation
We also wish to register our concern about the process by which these changes have been proposed and the speed at which they are being legislated.
Families like ours have been managing complex NDIS matters for years — attending tribunal hearings, gathering clinical evidence, advocating relentlessly for our children — all while working full time and carrying a significant caring load. We do not have the bandwidth to engage meaningfully with rapid legislative changes that are not communicated clearly to affected communities.
We did not feel that the implications of this Bill were clearly explained to us as NDIS participants and carers. We became aware of this inquiry through community networks, not through any formal NDIA communication. We are concerned that many families in more vulnerable circumstances than ours will not have the opportunity to make a submission at all.
Legislation that fundamentally alters the eligibility criteria and support structures of the NDIS deserves genuine, lengthy, accessible consultation with the people it directly affects.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1382
What We Are Asking of the Committee
We respectfully urge the Committee to:
• Reject or significantly amend the proposed changes to the definition of permanence, particularly any provisions that would require participants to exhaust “available” treatments before eligibility is confirmed, where the definition of available does not account for cost or geographic access. • Protect capacity building and community participation funding streams, which are the mechanism through which participants build independence and reduce their long-term reliance on NDIS supports. • Require that any changes to eligibility or support criteria be subject to comprehensive, accessible consultation with participants, carers, and disability communities — with adequate time and support for people to engage meaningfully. • Recognise that reducing NDIS funding in the short term will increase long- term costs across the NDIS, the healthcare system, the justice system, and housing systems, as unsupported people with disability reach crisis points that could have been prevented. • Acknowledge the particular vulnerability of people in regional and rural areas, and ensure that any reform does not create a two-tiered system where access to support depends on where you live.
Conclusion
We want our son to grow up to be as independent as possible. We want him to find work he is good at, to have friends, to manage his own home someday. That future is possible — but only if the scaffolding that is building his capacity remains in place during the critical years ahead of him.
The NDIS, at its best, is not about dependency. It is about investment. Every support hour our son receives now is building skills he will carry for life. Every reduction in his support increases the probability that he will need more intensive, more costly, more crisis-driven intervention in the future.
We urge the Committee to listen to the voices of families living this reality, and to protect the intent of the NDIS: to support Australians with disability to live ordinary, dignified, participating lives.
Yours sincerely,
Parents and Primary Carers , Tasmania May 2026