Impact of NDIS Amendments on Individuals with Fragile X Syndrome and FXTAS (Individual advocacy)

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.

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 Xpremutation carriers in later life, involving unsteadiness (ataxia), intention tremor (shaking) andFXAAcognitive impairment – presentations similar to Parkinson’s disease.      supports the objective of strengthening the sustainability of the NDIS. However, amendments                                Fragile X syndromein Schedule 1 of the Bill relating to access, eligibility, and plan management may have unintendedconsequences for individuals with                    or FXTAS.

Functional Capacity and Access

Schedule 1 introduces a definition of 'functional capacity' and requires a finding of 'substantiallyreduced functional capacity' across key life areas defined as mobility, communication, socialinteraction, learning, self-care, and self-managementFragilefor NDISX syndromeeligibility. FXTASThis amendment risks excluding individuals with                    or      whoseimpairments are variable (both between affected individuals and over an individual’s lifetime) andcontext-dependent. Many individuals with Fragile X syndrome may not meet rigid thresholds,despite requiring substantial lifelong support, in particular females with Fragile X syndrome (whocan appear less impacted).The Bill’s Explanatory Memorandum indicates that individuals with moderate needs are expected torely 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 supportsrather than on addressing the symptoms of an incurable genetic condition.

PermanenceThe Bill strengthensTestthe permanence requirement, requiring evidence that all appropriatetreatments have been undertaken and no treatment is likely to materially improve, reverse, oralleviate it.Fragile X syndrome

priorAlthough                          is inherently permanent, this change may delay access to effectiveinterventions, particularly for children, by requiring families to undertake therapies      toeligibility, potentially undermining early intervention outcomes.This change also has the potential to significantly impact those children who do not receive an earlyFragile X syndrome diagnosis, something more likely for individuals with moderate developmentalissues and/or issues that present later in childhood (e.g. speech delay) which may be initiallymisdiagnosed 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 impairmentspecific.

Submission 779 Fragile X syndrome is a known genetic cause of behavioural conditions such as autism, ADHD, andanxiety. A strict causation requirement risks excluding supports that are clearly necessary butmight 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. Upto 50% of males with Fragile X syndrome will meet the diagnostic criteria for autism spectrumdisorder. Approximately 2% of people who meet the criteria for a diagnosis of autism spectrumdisorder have been found to have Fragile X syndrome.Even if the rules are intended to allow for the treatment of behavioural conditions that arisebecause of an underlying qualifying genetic condition such as Fragile X syndrome, FXAA anticipatesthat families may face bureaucratic challenges demonstrating that those conditions (which wouldtypically be excluded in isolation) are linked to their Fragile X syndrome diagnosis. FXAA isconcerned that the changes may lead to the rigid exclusion of supports for impairments resultingfrom conditions such as autism, anxiety and ADHD for those who have Fragile X syndrome; theseconcerns are heightened in the context of the Bill permitting the use of automated decision-makingin 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 onlypresent later in life. FXTAS is relatively uncommon in that it is a genetic condition with late-onsetand variable symptoms and therefore FXAA is concerned that, as a result, those with FXTAS mightstruggle to navigate the bureaucratic thresholds of demonstrating both permanency of, and a directcausal link of the impairments, to FXTAS. PlanThe BillManagementintroduces reformsChangesto reassessment processes and replaces plan continuations with planrenewals, limiting flexibilityFragileandX preventing rollover of unspent funds.For participants with syndrome, whose needs may vary over time and who oftenexperience service access delays, these changes may reduce the ability of the Scheme to respond togenuine need. For participants with FXTAS, the trajectory of their impairment will likely bevariable and not predictable (severity of impairment can have rapid onset) with resultant needflexibility in plan management to address need.

Fragile X Association of Australia Inc   ABN: 18 655 264 4877   Page | 3           Registered office: Suite 204, 20 Dale Street, Brookvale NSW 2100   www.fragilex.org.au

Submission 779

Conclusion

Fragile X

syndrome   FXTASThe cumulative effect of the proposed reforms risks limiting access for individuals with         and      and narrowing the scope of supports available to them under the NDIS.FXAA supports a sustainable Scheme, but emphasises that eligibility frameworks must remainsufficiently 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