Submission 997
SUBMISSION
Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on
Track) Bill 2026
About the Submitter
This submission is made by an individual who brings a unique, multifaceted perspective to this inquiry:
Former Rare Disease Ambassador: Advocating at a systemic level for populations facing low incidence, complex health challenges.
Para-Athlete: Living and training with a progressive, neurologically degenerative, and life limiting condition.
NDIS Participant: Directly reliant on the scheme to manage a volatile and deteriorating disability.
The insights provided below are grounded in both personal lived experience and systemic advocacy for individuals with complex disability needs.
Executive Summary
While fiscal sustainability of the National Disability Insurance Scheme (NDIS) is a necessary focus, the proposed mechanisms within the 2026 Bill introduce rigid, sweeping powers that threaten the safety, autonomy, and fundamental health outcomes of participants.
For individuals living with rare, progressive, and life-limiting neurological conditions, the NDIS is not a lifestyle supplement—it is a critical life-support system.
This submission highlights severe concerns regarding the shifting of legislative power to ministerial discretion, rigid caps, and the penalisation of unspent funds.
Key Areas of Concern and Feedback on the Bill
- Section 34A – Ministerial Power to Cut Plans (% off Whole Categories) The capacity for a Minister to implement broad, percentage-based cuts across entire categories of support fails to account for the highly individualised nature of complex disabilities.
Submission 997
The Impact: For someone with a progressive neurological condition, a sudden percentage cut to a core or capacity-building category can result in an immediate breakdown of essential daily care.
Recommendation: Broad categorical cuts must be prohibited. Any adjustments to funding must require individualised, evidence-based assessments conducted by medical and allied health experts who understand the specific progression trajectory of the participant’s condition.
- Section 33(2EA) – Capping Support by Cohort via Referenced Documents Allowing the Agency to update cap values through external, referenced documents without parliamentary oversight bypasses democratic scrutiny and eliminates vital legislative safeguards.
The Impact: Rare diseases, by definition, do not fit neatly into standardized “cohorts.” Creating generic caps based on broad diagnoses completely erases the nuanced, high-intensity needs of individuals whose conditions are progressive or life-limiting.
Recommendation: Remove the mechanism allowing the Agency to alter support caps outside of parliamentary oversight. Ensure that “cohort definitions” cannot be used to limit funding for individuals with complex or rare diseases whose needs naturally exceed average cohort metrics.
- Section 34(1)(aa) – “Directly Arising” Support Restrictions Tightening the definition of fundable supports strictly to those “directly arising” from a primary disability ignores the systemic, compounding nature of multi-system degenerative conditions.
The Impact: Degenerative neurological conditions frequently trigger secondary medical, physical, and functional complications. If the NDIS refuses to fund a support because it is deemed a secondary complication rather than “directly arising” from the primary diagnosis, participants will fall through the cracks between health systems and the NDIS.
Recommendation: The definition must remain flexible enough to encompass any functional impairment or support need that is a secondary or compounding consequence of the participant’s primary medical condition.
- Section 50A – Auto-Renewal and the Forfeiture of Unspent Funds The proposal that unspent funds are permanently stripped at the end of a cycle directly penalises participants dealing with systemic delays, health crises, or complex equipment procurement.
The Impact: Individuals with severe physical and progressive disabilities require specialised, custom-engineered equipment (such as advanced custom wheelchairs or highly specific home modifications). The procurement, trial, and delivery timelines for these items routinely span months or even years due to global supply chains and clinical trial requirements. Stripping unspent funds because a custom order is mid-build or delayed by a vendor leaves participants stranded without vital equipment and without the funds to pay for it upon arrival.
Submission 997
Recommendation: Ensme a clear legislative exemption to Section 50A for any funds that are actively committed, allocated to custom equipment trials/orders, or unspent due to verified delays in home modifications and provider availability.
Conclusion
The NDIS was built on the promise of choice, contrnl, and individualised care. For a paii icipant managing a progressive, life-limiting rare disease, flexibility is not a luxmy-it is the difference between maintaining functional independence and experiencing rapid health deterioration. If passed in its cmTent f01m, this Bill replaces individualised, person-centered support with rigid, automated, and centralised bmeaucratic limits. The committee must consider the severe unintended consequences these amendments will have on Australia’s most vulnerable, complex, and severely disabled citizens.
Thank you for considering this submission.