National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1334
Senate Inquiry letter - 28/5/2026, 2:47 pm / 1
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:
Location:
Date: 29 May 2026
Status: Individual Submission (Parent, Carer, and Mental Health Support Worker)
Executive Summary
As a mental health support worker, a counselling student, and the mother of a 9- year-old girl, (who lives with Down Syndrome, Level 3 Autism, ADHD, is nonverbal and still in nappies) I welcome the opportunity to provide a submission to this inquiry.
This submission focuses on how the proposed legislative changes under the Securing the NDIS for Future Generations Bill 2026 look when applied to a real Australian household. The current political narrative frames NDIS participants as budget line-items or opportunists. The reality is a system executing a calculated war of attrition against exhausted families. This bill solidifies that deficit-focused, punitive approach, moving away from individual thriving toward aggressive fiscal rationing.
- The Fiction of “Sustainability” vs. The Fracture of Family Systems
The Bill aims to heavily curb scheme growth by implementing rigid budget-setting methods and sweeping cuts to social, civic, and capacity-building allocations. The policy assumption is that “informal supports” (families) can simply absorb the deficit. This is a dangerous systemic failure.
• The Reality of Support Cuts: We are already over capacity. For a nonverbal, non-toilet trained child who is a high sensory-seeker, capacity-building and social support are not luxuries. They are where safety, micro-communication skills (via AAC/Sign), and core life-skills are painstakingly practiced and maintained. If these supports are cut, these micro-skills are slowly lost because parents do not have the infinite bandwidth required to act as 24/7 therapists.
• The Fracture of the Household System: requires intense co- regulation and attention after school. When NDIS supports are restricted, the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1334
Senate Inquiry letter - 28/5/2026, 2:47 pm / 2
pressure causes profound structural damage to our family unit:
◦ Career and Economic Devastation: has been excluded from mainstream after-school and holiday care due to the complexity of her needs. Because skilled, trusted support workers are underfunded, the care falls almost entirely on us—specifically on my career. My working hours are highly volatile, and I am currently facing the reality of having to step back from my counselling studies. My husband, an organic chemist and university lecturer, has similarly had to take significant time off.
◦ The Limits of Psychological Coping: Our marriage is under immense strain. We are actively engaging in both couples counselling and individual therapy to survive this process. However, no amount of therapy can compensate for a structural deficit in physical, human support.
- The Medical Literacy Deficit and the “Permanence” Trap
The bill’s focus on redefining “permanence” and codifying requirements for participants to exhaust all “available treatments” shows a shocking lack of medical and disability literacy.
• Proving the Unchangeable: As both a professional and a parent, I find the requirement to continuously “prove permanence” degrading and illogical. I have repeatedly had to explain to NDIA representatives that Down Syndrome is a permanent genetic condition. The introduction of rules forcing families to chase endless, often inappropriate or inaccessible “treatments” to prove their child’s disability is immutable is a redundant, cruel exercise in gatekeeping.
• The Weaponisation of Evidence: Our family has been trapped in the Administrative Review Tribunal (ART) process for 18 months just to secure the basic funding our specialists agree needs. The NDIA systematically ignores a mountain of clinical evidence provided by lifelong specialists. Instead, they demand redundant, exhausting assessments— including forcing an external OT to assess purely to verify our claims, treating us as if we were trying to deceive the government. Even though this independent report entirely validated our claims, the adversarial nature of the process has completely eroded our trust.
- Bureaucracy as an Intentional Barrier to Autonomy
The original intent of the NDIS was a human-rights framework centred on choice, control, and individual thriving. This bill finalises a shift toward viewing disabled people purely as a financial burden to be managed.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1334
Senate Inquiry letter - 28/5/2026, 2:47 pm / 3
• A Propaganda War: The disability community has been shut out of genuine co-design. Instead, the government has engaged in a sustained rhetorical campaign, framing participants as receiving “free” luxuries while easily finding billions of dollars for defence projects or failing to close corporate tax loopholes.
• Bureaucracy by Design: We are told to play along with the appeals and ART process because “this is just how bureaucracy works.” But bureaucracy does not fall from heaven. It is constructed by design. The current 18-month delay we are experiencing at the tribunal is not an accident of red tape; it is a deliberate structural barrier designed to exhaust vulnerable families until they abandon their right to challenge draconian decisions.
Recommendations to the Committee
1 Reject the Arbitrary Budget Rationing: Abandon the rigid, top-down percentage reductions to social, civic, and capacity-building supports. Budgeting must remain tied to individual functional impact, not macro- economic targets.
2 Enshrine Procedural Fairness in Evidence: Amend the primary legislation to compel the NDIA to accept contemporaneous reports from a participant’s established allied health professionals, ending the practice of forcing traumatising, redundant external assessments.
3 Exempt Clear Genetic and Neurodivergent Conditions from the Permanence Trap: Explicitly exclude lifelong genetic conditions (such as Down Syndrome) and profound neuro-developmental diagnoses from provisions requiring ongoing proof of permanence or mandatory engagement with experimental/inaccessible treatments.