Submission to the National Disability Insurance Scheme Amendment Bill

Introduction

This submission is informed by lived experience as parents of a young person who lived with and died from a progressive neurodegenerative condition. Our experience involved navigating changing and complex support needs over time, including significant care \ncare\rrequirements, long-term planning for accessibilityand housing,and balancing multiple family responsibilities. The submission responds to specific provisions intheBill anda potential impacton participantsanda families.

Functional Capacity Framework(Eligibilitya nd Assessment)

Proposal: TheBilproposesafunctionalcapacityframeworkfordetermininge ligibilit yandsuppor tneeds ,placinggreateremphasisonehowaperson’sdisability affectstheir day-to-dayfunctioning . Concern:The proposedfunctional capacity frameworkmay disadvantage people with degenerative conditionswhose needss changeovertime; sometimesinaveryshortt ime.It shouldexplicitlyrequireconsiderationoflongitudinal specialist evidenceandedisease trajectory.Diagnosisshouldremaincentraltoassessment,a n dvariabilit yn efuncti onshoul dberecognisedastypicallyoccurringbetweenhigher-needandalower-ne edperiods ratherthanstabi lity. P ersonalexperienceandasuggested amendment :Our daughterwasinitiallydiagnosedat age6wit ha retina ldystrophyafterayearo fspecialistandoth erappointments.Wefound she wasalreadylegallyblind at diagnosis.Itwasexpectedthathervisionwould deteriorate overtime ;however,she lostmost of herremaining sightwithinonly a few years.Atage13 shewassubsequently diagnosedwithJuvenile Batten Disease(CLN3), alife-limit ingneurodegenerative condition.\nas h erconditionprogressed,sher functionalcapacitychangedsignificantlyandattimes \ndeterioratedmorequickl thananticipated.Planningforfuture needswase ssential.For example,equipmentsuchasa fittedelectricwheelchairtake considerabletimeto assess ,approve,b uild anddeliver.Decisionsbasedsole lyona person’scurrentleveloffunction mayfail toaccount forforeseeabledeteriorati one ndfuturesuppor trequirements.

National Disability Insurance Scheme Amendment Bill

Submission Number - Submission1975

A single assessment or snapshot of her abilities at any particular point-in-time does not accurately reflect what her condition was really like. For people living with progressive neuro-degenerate diseases, specialist clinical knowledge about disease trajectory is essential! I am concerned an over-reliance on functional capacity assessments may not adequately capture these realities! The functional assessments have some role but they shouldn’t outweigh diagnostic evidence & expert opinion. Assessment outcomes need reviewability especially where a degenerative condition exists & further deterioration expected; as happened when my child’s case became apparent later than initially thought.

Definition Of “Permanent” Disability

The bill proposes changes how permanent disabilities should be evaluated including whether impairments can treated managed alleviated. While treatment management sometimes alleviate symptoms this doesn’t change underlying permanence in progressions disability There’s also inequity risk access depends geography availability specialists financial capacity People rural remote areas might miss ongoing treatments and that shouldn’t affect if considered permanently. P.E experience suggested amendment Our daughter lived juvenile batten disease CLN3 grouped other rare conditions called childhood dementia Some fluctuate she coherent days others adult dementias similarly variable so do MS Treatment therapy interpreted evidence condition isn’t permanent likely resolve.

Reasonable And Necessary Supports / Informal Support Concerns:

Informal family support assumed unlimited consistently available Families provide substantial care happy to do so must assessed context their competing responsibilities plus severity Personal experience suggested amendment As parents provided extensive care throughout her neuro-degenerative condition Her needs included emergency hospital presentations due seizures mobility assistance communication

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1975

support, medication administration, feeding support, supervision and emotional support, including two-person assistance for personal care and showering. When one of us needed to support our other daughter with school and HSC commitments, or assist elderly parents at home or in hospital, additional care arrangements were often required to ensure our daughter’s needs could be safely met. At the same time, maintaining employment remained necessary to support our family financially so there was often only one parent available to support both daughters in two different places. While care responsibilities were primarily met within our family, there were times when additional support was essential. This experience demonstrated that even highly committed families cannot always absorb all caring responsibilities without assistance. Many families experience overlapping caring responsibilities alongside work and other obligations. Informal supports should therefore be assessed in terms of sustainability and capacity rather than assumed availability.

Plan End Dates and Unused Funds Proposal: The Bill proposes that plans have end dates and that unspent funds will generally not carry over into a new plan period.Comment: While regular plan review is appropriate, flexibility is needed where participants are unable to access supports due to circumstances beyond their control such as illness, hospitalisation, or provider shortages.Suggested amendment: The Bill should provide discretion to carry forward funds where participants can demonstrate that supports could not reasonably be accessed despite genuine need.

Automated Decision-MakingProposal: The Bill proposes expanded use of automated decision-making in some administrative NDIS processes.Concern: While automation may improve efficiency, it may not adequately account for individual circumstances in cases involving complex or degenerative conditions. Disability is often experienced in ways that change over time and require contextual understanding that may not be captured in standardised processes. A full understanding of the complexity and level of disability by someone with extensive experience in disability is important for understanding.Personal experience and suggested amendment: Our daughter’s neurodegenerative condition changed over time, with symptoms and support needs sometimes evolving gradually and sometimes unexpectedly. The full impact of her condition was only understood through ongoing observation, specialist input and the progression of

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1975 disease itself. We didn’t have the language or experience to understand some symptoms and issues she was experiencing and needed expert help. Some symptoms were initially attributed to other factors. For example, she believed her severe anxiety was largely related to rapid vision loss at school.Its challenges we experienced later learned through specialist assessment underling neurological disease significant contributing factor.This understanding changed perception support needs highlighted importance considering broader clinical picture snapshot time.A approach not accurately reflected either actual support needs likely progression those over time.The Bill ensure decisions affect eligibilities supports participants include meaningful human oversight access review decision-maker.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1975

took considerable time to plan and implement. In our case, this need became urgent sooner than expected as her blindness when combined with reduced mobility plus cognitive decline increased the risk of serious falls. To clarify: even slightly reduced mobility which could likely be managed with sight but became dangerous and unmanageable at an earlier stage as we realized she had lost spatial awareness and had some cognitive decline alongside being blind.

These were time-sensitive decisions that affected the entire family because moving would affect schooling/transport for her sister as well as herself and required planning in the context of a rapidly changing condition. Participants and families should have opportunities to contribute to decisions that affect long-term planning and access to supports.

Suggested amendment: The Bill should require meaningful consultation with participants, carers, and disability organizations before significant changes are made through delegatedlegislation, and ensure appropriate parliamentary oversight of those changes.