National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1498

I am writing this submission on behalf of my sister, , her daughter and the rest of her family. For them, and for thousands of families like theirs, the NDIS is fundamentally not about “extras.” It is the foundation of basic human rights: inclusion, communication, safety, community participation, meaningful relationships, and the baseline ability for our family to continue caring sustainably over the long term.

I deeply value everything the NDIS has enabled to achieve. It has opened up her world and provided individualized supports that genuinely work. While I absolutely support the overarching need for a sustainable NDIS, sustainability cannot come at the cost of broad cuts, reduced flexibility, or erecting barriers for people with significant disabilities and their families.

What is routinely left out of legislative and economic discussions surrounding NDIS “sustainability” is the enormous amount of unpaid labor carried by families. The NDIS does not exist in a vacuum; it relies heavily on a scaffolding of family care that includes:

• Daily Administration: Endless hours spent on appointment scheduling, coordination of multiple allied health professionals, and rigid provider management.

• Advocacy & Problem-Solving: Constant systemic navigation, training support staff, and active, daily troubleshooting to make ordinary life accessible.

• Clinical & Emotional Support: Managing complex behavior support, facilitating communication, managing transport logistics, and carrying a heavy, permanent emotional load.

This labor is performed gladly out of love, but it is finite. When the NDIS framework functions flexibly, it preserves a family’s capacity to keep caring. When it is restricted, the entire system risks breaking under the weight shifted back onto families.

Having reviewed the summary of the proposed changes, we have major concerns about how these legal adjustments will manifest in ’s daily life:

• Redefining ‘Functional Capacity’ and ‘Reasonable and Necessary’ Supports: We are deeply concerned that narrowing these frameworks will result in rigid, automated matrixes that fail to account for the nuanced reality of significant permanent disabilities. Decisions must remain evidence-based and highly individualized, dictated by clinical reality rather than arbitrary funding caps.

• Ministerial Powers to Reduce Funding for Specified Groups: Granting centralized power to reduce funding for entire classes of supports strips away the core, foundational promise of an individualized scheme. What is deemed an “unnecessary” group of supports by a department may be the exact lifeline that keeps safe and participating in her community.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1498

• Limiting Unscheduled Plan Reassessments and Introducing Strict End Dates: Disability is rarely static. Health conditions fluctuate, family circumstances change, and crises occur. Restricting a participant’s ability to request an unscheduled reassessment ignores the unpredictable nature of living with a disability and risks leaving vulnerable participants stranded without adequate support when they need it most.

The Concept of “All Appropriate Treatment” for Permanence: Introducing this terminology runs the dangerous risk of forcing individuals to undergo exhausting, unnecessary, or unproven medical treatments simply to prove their disability is still “permanent” to retain access to basic support.

Inclusion opens up worlds. We have seen firsthand the profound difference that robust, reliable communication and individualized support make for .

I urge the Senate Committee to look past purely fiscal metrics and see the real human impact of these proposed changes. We ask that the NDIS remain a scheme built on dignity, opportunity, and belonging. Decisions regarding funding and support must remain firmly rooted in individual needs and clinical evidence, ensuring that the NDIS remains an empowering tool rather than an administrative barrier.

Thank you for considering our perspective.