National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313
Submission To The Senate Community Affairs Legislation Committee
NDIS Amendment (Securing the NDIS For Future Generations) Bill 2026
Introduction
I am writing as a single disabled parent to my autistic transgender child who both I & my daughter are participants under the NDIS scheme. This bill poses serious risk independently together. My condition includes: POTS(Postural Orthostatic Tachycardia Syndrome) MCAS(Mast Cell Activation Syndrome) Hypermobile Spectrum Disorder(with pending assessment for Hypermobility Ehlers Danlos syndrome). adrenomyosis, hypothyroidism,fibromyalgia,chronic fatigue,& chronic migraines with aura.My conditions complex fluctuating deeply interconnected share many overlapping symptoms.I’m Autistic Level-2,NDIS participant.day-to-day capacity shaped all these simultaneously. Daughter is also Autistic level -2 has ADHD(combined type),suspected DCD(Developmental Coordination disorder).She’s also Transgender which impacts her experiences as person contributes complexity of support needs creates additional barriers accessing disability supports whatever one’s view on trans issues hope agree she high complex disability needs faces barrier average does not.Due daughter’s complex needs sole carer since leaving abusive marriage few years ago had no family support network.NDIS critical survival enabling function learn live independent. Writing about four aspects this bill applies our circumstances.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313
sessions and an extended period of rapport-building. Removing supports from the assessment picture would not reveal a truer picture of my daughter’s needs – it would obscure them entirely. If she appears to have low needs in a snapshot assessment, it would at best reveal her supports are working.
The same applies to me. My capacity and needs vary significantly and are severely impacted by everyday activities — like whether I showered, whether I prepared a meal, whether I left the house, how many meetings I have, or how hot or humid it is that particular day. I have learned to adapt by using a shower chair, sitting while preparing medication and meals, sitting while brushing my teeth, opting for video calls over audio calls where possible, and doing online shopping. Access to support workers has changed my life— notably improving my capacity and independence. My NDIS supports and environmental adaptations are why some days I might appear more functional, particularly given my many invisible illnesses and disabilities. Assess me without these supports and adaptations, or on a day when I haven’t experienced many triggers, and the assessment would be profoundly inaccurate. My support team understands the fluctuating nature, the significant impact of environments and triggers, and the complexity of my disability—which is what allows them to capture a true reflection of my needs and suggest effective and sustainable supports.
I ask the Committee to remove the requirement that functional capacity be assessed ‘without assistance,’ and instead require assessments to reflect how a person truly functions in their daily life with their existing supports in place. I also ask the Committee to protect the requirement for allied health and treating professional evidence in all access, planning and reassessment decisions. This is not only best for participants but will protect governing agencies from the risk of causing further harm and injury to participants.
Schedule 1, Part 3: Co-occurring conditions cannot be separated from Autism
Schedule 1, Part 3 requires that funded supports arise ‘directly’ from the impairment for which a person was assessed. Previously, the word
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313 My daughter’s situation is similar. She is on the NDIS as an Autistic person, but her ADHD suspected DCD suspected DCD , an associated sensory executive functioning difficulties cannot be neatly separated.Her supportscannotbe effectiveor sustainable if they donot considerherasa wholeperson.Autistic peopleare nota monolith-by definition we areon a spectrum-and needto beseenandsupportedassuch.Our personal experiencesof challenges connectedt o Autism being exacerbatedby our co-occurringconditionsar enot rare.Research published inthe Journalo fAutismand Developmental Disorders(Guan et al., 2021 PM C1O lZ4270 ) confirmsthatthemajorityOf autisticpeoplehave at least oneco - occurring condition.These issues are deeply intertwined, overlapping,and inseparable.I askth e Committee tore movetheword‘directly’from th emendment and restorethen NDIA’s obligation to fund supportfor thenwhole perso n,n ot justa single diagnosisin isolation.Schedule I Part8: The ‘appropriate treatment requirementPart of ScheduleI inserts new subsectionsint heNDIS Act that change what it means foran impairment tobepermanent.Undernew provisions,a ndisment will not b considered permanent unless: the persohas undertaken“appropriatetreatment”fort; any further treat ment is unlikelytomaterially improve or alleviate thecondition ; and them impairem ent iss likelytopersist forth person’s lifetime.Crucially,the ne w section explicitly states tha t treata men tm ay beconsidered “appropria te regardless oft hetherperson’s individual financialcircumstancesor geographic location prevent them from accessingit.My disability,Autism,is a lifelongneurological condi tion.Therei no evidence-based treatments thatremoves ore solves i. The therapies I accesssupport me tom anage daily life-they donot anda nt eliminatethe underlying conditi on.Even seekingdiagnosis, elongetertreatment,i saexpensiveanda challengingexercise,particularlyf o rthoseof usoutside major cities.Afterbeingona waitlistformonth s,I was‘lucky’tobe assessed and diagnosed as Autisticbefore my divorce-otherwise wouldnothavebeen abletoaffordtoseek diagnosisasa single ,disabled parentiam today.I also havea number ofco - occurring conditions n ot yet listedony NDIS plan.The di agnosis andre atemento ftheselifelongconditionsrequiremultiplecliniciansan d then triallingoft he multiplemedication combinationswhich are expensiveadifficult toaccess whenyou live outside am ajor city.Despiteactively pursuingd ia gnosisand treatmentI face significant structuralbarriers.Have beenwait listfor over 12 months formyhEDS assessment.Myt reating cardiologistwhom I acces via telehealthhas clinically identifiedthat Ihav ePOTS and istreatingme accordingly.However,h is unabletogive m ea formal POTS diagnosise because theNASA lean testcurrently requiredfordiagnosticmustbe conductedin-clinic,andnocliniccan currentlyacceptat-hometests orwearabledata.e ven where that datais clini callysubstantiv .Have madeuse mental health plans, alliedhe al thplans an deveryaccessible supportMedicare offers.Underthis Bill’stest, could be told hav enot completed“appropriate treat ment”notbecausehave refusedtopursue options,b utbecausethesetionsare not accessible tome.These ar efailuresofthe healthcare system through no fault o my own-andyetwouldbepenalisedf ort hem ,withth elikelyresulttha t my conditions deteriorate andthenburdenon healthcareandsocial welfare systems increases,the opposite of what thisBill claimsto achieve.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313
I ask the Committee to amend the Bill so that treatment only counts as ‘appropriate’ if it is genuinely accessible to that person given their finances, location, and medical circumstances. I also ask the Committee to explicitly confirm in the legislation that Autism is a permanent, lifelong neurological condition for which no curative treatment exists.
The cumulative gendered impact: A single disabled mother losing her last foothold in
the workforce
I want to speak plainly about the gendered economic harm this Bill will cause – because I am living its intended outcome in advance, and I can predict what these changes will do.
I am a single parent. I receive a single parent pension and carer’s allowance. My primary role — seven days a week —is caring for and homeschooling my daughter who has high complex needs.I homeschooled her because mainstream schooling was not safe for her; she was bulliedand traumatised leadingto panic attacks,suicidal thoughts,self-harm,and school refusal fromas youngasa eight years old.These experiences were directly relatedt oher being Autistic anda transgender”the combination of both identities madeit extremely difficult t find environmentsthat wer egenuinely safefor here. IAM therefore herschool,hernDISa ndpractitioner coordinator ,h eradvocate,a h erscheduler,ha rcook, ha rcareranda hernparent - all at once .My current NDIS supports have helped me build asmall amountof capacity beyond that.Idam sometimes abletotake on casual workin research an dvirtual assistancefrom home,inthelimited hourswhenmysymptomsallowan dw henmydaughter is occupied.IDA m highly educatedwith abachelor’shonours, an dmasterr sdegreeyetID cannotwork full time ID no longerhave acareer.But thanks tom yNDISsupportsI hav eafoothold:asmall income connection tot he workforce ase nseo fprofessional identity ana small superannuation contribution
- allofwhich matter enormoulsytoa single womanwho hasescaped abuse andisona pension inheforties with a precarious financial future. The proposed changes i this Bill will take thate foothol da way.The new subsectioni Schedule 1 Part6(subsections34(IG),34(IH)and34 (IJ))createsal egalpresumptiontha tparents are responsiblefor providing ‘substantial careandsupport’ fortheir children-definedto include supervision,personalcare,tansport,e motional support,b ehaviouralsuppor t,andotherassistancew ithdaily living.It then directs theN DISnott o fundsupporthose whoseprimary purposeistoreducburdensont parentaltimebelowwhat ist’reasonably expected ofa parent,’improvehouseholdefficiency,orgiveeffecttoparent’s preference fors uppo rt tobeprovided other than byparentalcare.Ifmy daughter’s supports arereduced underthese provisions,Iwill absorbthedifference. The burden does not disappear.Itran sfersto me-someone who is alsodisabled, w ho cannotdriveto accesssupports ,an dwhoi alreadystrugglingtomaintainherownfunctioning an dhefootholdinthe workforce .If my own sup portsa re reduced-because I am assessedwithoutmysupp ortsinplaceunder thenewfunctionalcapacitydefinitionorbecausetheadia determinsthatm yco-occurring conditions do no’t’directlyarisefrom m yAutism-I will have less capacity to function at all. Lesscapacitoywork.Less capacitytoc a r f ormy daughter.Le ss capacit yo maintain them ouse hold.Iamalso inthem demographi mostat riskofhomelessnessandtheremovalo these support -int hecontextothe current cost-of-living crisis-materialy increases thatrisk.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313
The NDIA’s quarterly data from March 2025 revealed that carer employment rose 6 percentage points – from 46% to 52% — with access to the NDIS. This documents a direct relationship between funding and workforce participation. These changes will reverse that. More people who are already struggling will become unemployed. Research consistently shows that primary carers are disproportionately women—women who will lose income, superannuation, and social connection as a result. I also want to note that my support workers and almost all of my support team—for both myself and my daughter—are women. Not because we sought out women providers but due to availability mostly being female in our provider pool if funding is reduced across this system they too would lose their jobs The gendered impact flows through disabled women those caring or providing disability supports. I ask Committee:
- Remove subsections:
34(1G),(1H)&(J) - Require Gender Impact Assessment before proceeding
- Commission Modelling on effect on Carer Workforce Participation if proposed reductions implemented Consider flow-on effects these changes have on Employment rates hospitalisation homelessness other outcomes Recognise cumulative effect new functional capacity definition directly requirement appropriate treatment test parental responsibility presumptions fall disproportionate Women particularly harm single mothers children. Conclusion My Daughter I not rare edge cases People scheme designed genuine complex lifelong needs adequate support makes difference functioning not function struggle Our NDIS does sustain wellbeing build capacity education work community Prior her suicidal eight years old move home education access NDIS significantly improved well-being plead consider people like us reviewing Bill Ask the Committee oppose current form recommend substantive amendments protect right every participant assessed individual real conditions fully view Also reflect what consultation with Disability Community could achieve This was introduced 2026 submission window for a page originally closed May granted day window includes many cognitive energy-limiting communication-related disabilities That compliance form of consultation Disabled families are simply respondents reform proposals hold most detailed first-hand knowledge where works fails savings made without causing harm truly
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2313
consultative process –oneinwhichwearepartnersindesigningreformratherthansubjects of it–wouldbebothmoreeffectiveandmorjust.IhopetheCommitteewillrecommend\tsuchaprocessoccurbeforethisBillisallowedtoproceed. Iunderstandthedesiretodeaddressinefficienciesandpoorpracticesinthesceme.ButIdonotunderstandsowthechangesinthisBillicheavethat,whestitNDISparticipantswhillowbearthestreatestcosts.IftheGovernmentisseriousaboutasustainableNDIS,itneedsourexpertiseattable—notourcomplianceafterthefact.