Submission 779

Date: 1 June 2026Committee SecretarySenate Standing Committees on Community AffairsPO Box 6100Parliament HouseCanberra ACT 2600DearRe: InquiryCommitteeintoMembers,the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Fragile X Association of Australia Submission

Introduction

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) BillFragile X Association of Australia (FXAA) welcomes the opportunity to provide this submission on2026the (the Bill).

Fragile X syndrome, Fragile X-associated Tremor/Ataxia SyndromeFXAA is a registered charity representing individuals and families1 affected by (FXTAS) and other conditions caused by aFMR1 (Fragile X) gene mutation.

Fragile X syndrome FXTAS.Our submission focuses on the implications of the proposed amendments in the Bill for people withFragile X syndrome and people with is a lifelong, genetic condition characterised by cognitive, behavioural, andfunctional impairments which are permanent and significant. It is the leading cause of inheritedintellectual disability, affecting about 1 in 4,000 males and about 1 in 6,000 females. There is nocure for Fragile X syndrome but there are a range of treatment interventions and managementstrategies that can be of great benefit in supporting an individual’s functional capacity over theirlifetime.Fragile X syndrome can cause a wide range of difficulties with learning, as well as social, languageand attentional impairments, emotional and behavioural difficulties, motor coordination difficultiesand medical problems. The effects of Fragile X syndrome on an individual vary from person toperson and can range from mild to severe impairment. Men and boys commonly appear moreseverely affected by Fragile X syndrome but women and girls may also be severely affected.

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Fragile X Association of Australia Inc ABN: 18 655 264 4877 Page | 1 Registered office: Suite 204, 20 Dale Street, Brookvale NSW 2100 www.fragilex.org.au

Submission 779

FXTAS is an adult onset neurological (brain and movement) disorder which affects some Fragile X pre-mutation carriers in later life, involving unsteadiness (ataxia), intention tremor (shaking) and cognitive impairment – presentations similar to Parkinson’s disease.

supports the objective of strengthening the sustainability of the NDIS. However, amendments

Fragile X syndrome in Schedule 1 of the Bill relating to access, eligibility, and plan management may have unintended consequences for individuals with

                or FXTAS.

Functional Capacity and Access

Schedule 1 introduces a definition of ‘functional capacity’ and requires a finding of ‘substantially reduced functional capacity’ across key life areas defined as mobility, communication, social interaction, learning, self-care, and self-management for NDIS eligibility. This amendment risks excluding individuals with

               or      whose impairments are variable (both between affected individuals and over an individual's lifetime) and context-dependent. Many individuals with Fragile X syndrome may not meet rigid thresholds, despite requiring substantial lifelong support, in particular females with Fragile X syndrome (who can appear less impacted).

The Bill’s Explanatory Memorandum indicates that individuals with moderate needs are expected to rely on non-NDIS supports. However, this broader support system has not been fully realised, creating a risk of service gaps, and appears intended to focus primarily on behavioural supports rather than on addressing the symptoms of an incurable genetic condition.

Permanence

The Bill strengthens Test the permanence requirement, requiring evidence that all appropriate treatments have been undertaken and no treatment is likely to materially improve, reverse, or alleviate it. Fragile X syndrome prior Although is inherently permanent, this change may delay access to effective interventions, particularly for children, by requiring families to undertake therapies to eligibility, potentially undermining early intervention outcomes.This change also has the potential to significantly impact those children who do not receive an early Fragile X syndrome diagnosis, something more likely for individuals with moderate developmental issues and/or issues that present later in childhood (e.g. speech delay) which may be initially misdiagnosed as temporary delays.FXTAS is an inherently permanent neurodegenerative condition, with no curative treatment.

Direct Causal Link Requirement

The Bill limits NDIS funding for supports to those directly arising from the qualifying impairment, requiring a clear causal relationship between the qualifying impairment and the supports needed. This will necessarily mean that NDIS plans will generally become narrower and more impairment specific.

Submission 779

Fragile X syndrome is a known genetic cause of behavioural conditions such as autism, ADHD, and anxiety. A strict causation requirement risks excluding supports that are clearly necessary but might be difficult to clearly attribute to one’s Fragile X syndrome diagnosis.

Fragile X syndrome is the most common known single-gene cause of autism spectrum disorder. Up to 50% of males with Fragile X syndrome will meet the diagnostic criteria for autism spectrum disorder. Approximately 2% of people who meet the criteria for a diagnosis of autism spectrum disorder have been found to have Fragile X syndrome.

Even if the rules are intended to allow for the treatment of behavioural conditions that arise because of an underlying qualifying genetic condition such as Fragile X syndrome, FXAA anticipates that families may face bureaucratic challenges demonstrating that those conditions (which would typically be excluded in isolation) are linked to their Fragile X syndrome diagnosis. FXAA is concerned that the changes may lead to the rigid exclusion of supports for impairments resulting from conditions such as autism, anxiety and ADHD for those who have Fragile X syndrome; these concerns are heightened in the context of the Bill permitting the use of automated decision-making in the administration of the Scheme.

This change is also of potential significance for individuals with FXTAS, a late-onset condition, where establishing causation may be complex given symptoms of this condition typically only present later in life. FXTAS is relatively uncommon in that it is a genetic condition with late-onset and variable symptoms and therefore FXAA is concerned that, as a result, those with FXTAS might struggle to navigate the bureaucratic thresholds of demonstrating both permanency of, and a direct causal link of the impairments, to FXTAS.

Plan

The Bill introduces reforms to reassessment processes and replaces plan continuations with plan renewals, limiting flexibility and preventing rollover of unspent funds. For participants with syndrome, whose needs may vary over time and who often experience service access delays, these changes may reduce the ability of the Scheme to respond to genuine need. For participants with FXTAS, the trajectory of their impairment will likely be variable and not predictable (severity of impairment can have rapid onset) with resultant need flexibility in plan management to address need.

Submission 779

Conclusion

Fragile X syndrome FXAA supports a sustainable Scheme, but emphasises that eligibility frameworks must remain sufficiently flexible to capture complex, lifelong, and variable disabilities.

RecommendationsFXAAFunctionalrecommendscapacitythat:assessments allow for variability and context-specific impairments.

The causation requirement accommodates interrelated conditions, with the eligibility frameworks•(as associated bureaucratic governance) explicitly recognising that Fragile X syndrome is an accepted•genetic cause of autism, ADHD and anxiety and other conditions known to be associated.

Early intervention pathways remain accessible to those with Fragile X syndrome who are experiencing developmental delays but are pre-diagnosis.• Safeguards are implemented for late-onset conditions such as FXTAS to ensure access remains available and that the inherent variability of the impairments is accommodated by the Scheme.•

Thank you for your consideration of this submission, and we look forward to hearing the outcomesof the Inquiry.Yours sincerely,Wendy Bruce Executive Director

Contact for any further information in relation to this submission: Wendy Bruce, Executive Director, Fragile X Association of Australia

REFERENCE

The New England1Journal of Hagerman, R. J., & Hagerman, P. J. (2025). The spectrum of Fragile X disorders. Medicine, 393(3), 281–288. https://doi.org/10.1056/NEJMra2300487