National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2031
Date: 30 May 2026 Dear Committee Secretary, I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. I make this submission as a family member, carer, NDIS nominee and enduring power of attorney for my brother redacted, and as the sister of two brothers with Huntington’s Disease. My existing carer statement explains that I have supported redacted since 2019 and remain actively involved in his care.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2031
I am also concerned about proposals that tighten eligibility by requiring people to exhaust treatment options and by moving away from a whole-of-person assessment. The template states that the bill would require people to exhaust treatment options before eligibility and replace whole-of-person consideration with a single eligible impairment focus. That approach is not appropriate for Huntington’s Disease, which public health sources describe as progressive and without cure.Support should be based on actual functional need and real-world safety ,not ona narrowor theoretical viewoftreatment . The proposedapproachtofunctionalassessmentisalsoconcerning.Thetemplate raises concernsthattheICANToolmaynotheadequatelyidentifyneedsespeciallywhere disabilityismore complexfluctuatingornotwellcapturedatasinglepointintime.Huntington’sDisease affects physicalmovement,cognitionbehaviourcommunicationandswallowingtogather.Inredacted ’s case,existingrecordsrefertochoreaweaknessbalanceproblems cognitive difficulties impulsivity reducedspeechclarityandyssphagia.A narrows orone-offassessments risks underestimatingreal support needs anda causing harm.My family knows what inadequatesupport looks like in practice.Itlookslikeurgentrequestsforequipmentnotinbeingactionedwhilefallscontinue.I tlookslikesuppor tcordinatorswarning thatafundingshortfallsmayforcehospitaladmission It look slike years ofadvocacytosecure recognitionofofnecesssthatareplainlyincreasingbecauseofaprogressive neurologica lcondition. MytwobrothershaveHuntingtons Diseas e.Anyreductiondelayorno removaloft heir supports is not a minoradministrativematter itcouldaccelerater theirdeclineincreasepreventable harmand shortentheir lives. I urge the Committee to recommend substantial amendment o fthis bill so that no currentparticipantise xposedtoharmthroughreducedsupports,redu ced rightsor reviewonor narrowereligibilityrules . Yours faithfully,