Submission to the Community Affairs Legislation Committee

In Inquiry into: The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Date: June 2026

1. Introduction & Context

I welcome the opportunity to provide a submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

As a primary caregiver and qualified educator navigating the NDIS for my sons, I offer a critical perspective on how the proposed legislative changes will impact families managing high-stakes, multi-faceted care profiles. My children have complex, intersecting disabilities, including a rare genetic condition (CAMTA1), refractory epilepsy, vision impairment, and Autism Spectrum Disorder.

While my children are enrolled in specialized education settings designed for high-support needs, the severity and unpredictability of their conditions mean that mainstream or even specialized school structures cannot fully accommodate their care. For instance, due to the profound functional impact of his needs and medical instability, my eldest son is on a significantly reduced school attendance schedule. This reality bridges the gap between state education and acute home care, placing an extraordinary, continuous demand on our family’s informal support structures.

2. Key Areas of Concern & Recommendations

A. The Shift Toward Rigid Assessment Metrics vs. Complex, Intersecting Functional Capacity

The Bill’s emphasis on streamlining access and budget determinations through standardized assessment tools risks erasing the realities of individuals with rare genetic conditions and unstable medical profiles.

The Issue: Conditions like CAMTA1, especially when compounded by refractory epilepsy, do not sit neatly within standard diagnostic boxes or rigid lists (such as standard List A or List B classifications). The functional impact of these intersecting diagnoses is non-linear and highly volatile. Standardized, brief assessments often fail to capture the profound cognitive fluctuations, post-ictal recovery phases, and behavioral dysregulation that occur outside a structured school environment, or that actively prevent a child from sustaining a full school week. Recommendation: Ensure that any legislative framework establishing new assessment methodologies mandates a complex care carve-out. Where rare genetic conditions or unstable medical profiles exist, the assessment must heavily weight specialized clinical evidence from the participant’s long-term treating specialists over generic, outsourced assessment metrics.

B. Sustainability of Informal Support Systems

A core stated objective of the Bill is to ensure the “future sustainability” of the scheme. However, sustainability cannot be achieved by shifting the economic and physical burden entirely back onto parents and informal networks.

C. True Boundary Definitions Between the NDIS and Specialized Education

The Bill seeks to clearer define the boundaries between the NDIS and foundational/mainstream systems, including the education sector.

The Issue:

While specialized schools provide vital educational modifications, they cannot replace the intensive, individualized therapeutic interventions required to manage complex neurodivergent and medical conditions. There is a risk that the Bill will attempt to offload therapeutic responsibilities onto specialized schools, leading to a reduction in NDIS-funded therapies. Specialized schools are already stretched to capacity and are designed for group-based educational access, not the intensive, individual clinical therapy required to maintain a child’s baseline functional capacity at home.

Recommendation:

The operational rules resulting from this Bill must maintain a clear distinction between educational access (the school’s role) and functional capacity building (the NDIS’s role). NDIS funding for vital therapies must not be reduced or restricted under the assumption that a specialized school setting mitigates the need for individual clinical support.

I urge the Committee to ensure that flexibility, clinician-led evidence, and a holistic view of actual family care hours remain at the absolute center of this legislation.

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