Submission opposing the NDIS Amendment (Securing the
NDIS for Future Generations) Bill 2026
About me and my son
My name is redacted . I am the mother and primary carer of my son, a 32-year-old man who has been a participant since inception. He faces global developmental delay due to chromosomal translocation involving chromosomes nine and eleven; his condition includes Cerebral Palsy; Autism Spectrum Disorder as well as complex medical needs requiring wheelchair mobility support along with constant care throughout his daily activities because he cannot speak or control bladder function independently without assistance from trained caregivers at home.
National Disability Insurance Scheme Amendment Bill Submission
Submission: [NDIS Amend] Securing NDIS Future Generations Bill - Subm #2082
Every one of these goals is directly threatened by this Bill. I address each relevant part below:
The consultation process is wholly inadequate
This [long document] was introduced on May 15th with submission deadline being approximately two weeks later due to limited time resources for carers like myself who are not genuinely consulted but rather go through formalities alone. It’s imperative we have real opportunities engaging people in disability sector alongside their families before proceeding further as per my recommendation above regarding thorough resourced consultations completed.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2082
therapist has documented that without capacity building funding, My son cannot access the allied health supports required for any independence at all. He also lost his long-term support worker in October last year – a man who had supported him for 14 years and was like family to him.The worker’s sudden death left my son unable to regulate his grief because he cannot communicate it.Therapeutic participation supports provide structure joy emotional regulation more critical than ever The prospect these being cut Ministerial determination individual review appeal alarmingly alarming.I urge Committee recommend Minsterial power Part be removed minimum subject parliamentary disallowance independent review impact assessment before taking effect.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2082
want to be able to have our own lives –-to rest,to travel,tospend time withour other childrenand grandchildren.Weshouldnotstillbe providing hands on personal carefor mysontoour retirementyears.The whole purposeoftheNDISwasto ensurethat peoplelikemysonhavetheformalsupportstheyneedso thate their ageing parentsare nottheir default carersforallife.Thesuppor t we provide touson isunsustainable.ThisBill ,if passed as introduced,woul dcutthesupporthat givemysona lifebeyondhisfourwallsthrougha Ministerial pen strokewithout reviewor notice .Thatisnotinwhatthen DISwasbuiltf o r.
title: Real risks my son—and real costs government—if this Bill passes The Governmenthas framedthisBilla sustainability measure.I want Committeeunderstand what“sustainability”looks like in practice som eone likemysoon— and whycutting his NDIs supportsisanot saving.Itisa cost shift too ther,far more expensive,part ofgovernment system. If hydrotherapyexercise physiology funding cut: Hydrotherap y isthe only environmentin whichmy soncan weightbearwalk.Without it,hisalready limited lowerlimbf unctionwilldeterior ate.Hiscerebral Palsy causesprogressivemu sclecontracture — without regular exercise,thisaccelerates.T he likely outcomeincreasedfalls,reducedmobility,pres sion injuriesfrom prolongedwheelchairuse,and a higher riskof respiratory complications from immobility.M ys onalso doublyinacontinent.Managinghisincontinence already requiresmultiple full personal care routines every dayandnightclothing changes, showering,bedlinenchanges ， continenc aid replacements.W ith outhydro therapyandexerc isephysiologymaintainingwhatt little physicalcapacity h has ,his mobilitytransfers willbecome mor edifficult requiringmore intensive manual handling support workers increasing therisk injury to bothmyson anda carers.Reducedphysical capacity also directly increases volume complexitypersonalcare required around him incon tinence .Each these consequenceswouldresult inhospital admissions,specialist medicalca re，significantly increasedpersonalcare hours—all at public expense.A single unplanned hospitalisation for person with myson’scomplexity cancosttens thousands dollars.Preventing that through fundedhydroth erapy andexercise physiologyprogram isnotluxury;itisp r eventive medicine. Ifbehavioursupportcapac y building funding cut: My son’ sb ehavioursupportplan documents his behaviours of concern— screaming, physica l aggressionproperty damage occur whenheis overstimulated,fatigued or unableto communicate needs.Thes behav ioures currently managedthrough proactive strategiesstructured rou tinesandskilled suppor Withoutfunded behavioursupp ortthesebehavei s escalate.Theconsequences are concrete:injury mys onorhissuppo rtworkersleading WorkCover claimsand lossof staffpolice callouts；potential crisisadmissions acute mental health disabilitycrisis services.Mys onhasalready lost two key support worker withoutthebehavioursuppport frameworkthat helpswork ers understandmanagemyneedsretainingfuture workersbecomes even harder
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2082
- creating a cycle of workforce instability that increases costs and risk simultaneously.
If communication (AAC) funding is cut:
My son is non-verbal and cannot communicate pain, distress, or medical symptoms. His speech pathologist has formally documented that without an AAC system, he will remain unable to communicate basic needs to anyone outside his immediate support circle. This is not just a quality of life issue – it is a patient safety issue. He cannot tell a nurse, a doctor, or an emergency responder that he is in pain, where it hurts, or what has happened. He cannot consent to or refuse treatment. In a medical emergency, this significantly increases the risk of misdiagnosis, delayed treatment, another line break here due to OCR detection but no actual content change needed - as poor outcomes. Emergency and hospital staff dealing with a non-verbal, highly distressed adult with complex behaviours and no communication system face an extremely difficult situation — one that is preventable with funded speech pathology after Fred’s death—his emotional dysregulation increases, hisbehaviours escalate,andtheburden onhism familyandsupportworkersintensifies.Socialisolationforpeoplewithcomplex disabilityisa well-documented driverofmentalhealthdeteriorationphysical health decline ,an ultimately higher dependencyon acute services . Sailability swimming music activities.When these are removedmusic, community outingsarenotluxuries—theyarethescaffoldingthatkeepshimstableandoutcrisis.
If carer support becomes unsustainable:
The hands-on care Steve and myself are providing issustainable already.Stevehasadiagnosed mental health condition.Ifcarerbreakdownoccursmyson’selectire supportsystemcollapses.Beyondtheriskofcarer breakdownthereisanequally seriousriskwhenhedoesnothavetrained familiar supportsaroundhim.Heisonverba ldoublyincontinentunableto communicatepaindistressorchangesinhishelath.Hereleasyentirleyoneoplewho know himwelltodetectearlysignsof illnessordeterioration.Unfamiliar or untrained support workers – the inevitable result of workforce instability caused by inadequate funding—are far less able to recognizethesesigns. This directlyincreases histriskohospitalisationfrom preventabledeterioration.The alternativefamily-basedcare supportedby trained after Fred’s death—his emotional dysregulation increases hisbehaviours escalateandtheburden onhism familyandsupportworkersintensifies.Socialisolationforpeoplewithcomplex disabilityisa well-documented drivermentalhealthdeteriorationphysical decline ,an ultimately higher dependencyon acute services . Sailability swimming music activities.When these arereduced when he has access structured enjoyable community activities Whentheseareremovedas happenedafterFred’sdeathemotional dysregulationincrease behaviorescalate and burden familiyandsupportworker intensify Social isolation for people with complexdisability is a welldocumenteddriver mental health deterioration physical healthdecline anultimatelyhigherdependencyacute service sSail abilityswimmingmusiccommunityoutingsnotluxuries theyarethescaffoldingthatkeepshimstable outofcrisis.
If carer support becomes unsustainable:
The hands-on care Steve myself are providing issustainable already.Stevehasadiagnosed mental condition.Ifcarerbreakdownoccursmyson’selectire supportsystemcollapses.Beyondtherisk ofcarer breakdownthereisanequally seriousriskwhenhedoesnothavetrained familiar supportsaroundhim.Heisonverba ldoublyincontinentunableto communicatepaindistressorchangesinhishelath.Hereleasyentirleyoneoplewho know himwelltodetectearlysignsof illnessordeterioration.Unfamiliar or untrained support workers – the inevitable result workforce instability caused inadequate funding—are far less able recognizethesesigns. This directlyincreases histriskohospitalisationfrom preventabledeterioration.The alternativefamily-basedcare supportedby trained after Fred’s death—his emotional dysregulation increases hisbehaviours escalateandtheburden onhism familyandsupportworkersintensifies.Socialisolationforpeoplewithcomplex disabilityisa well-documented drivermentalhealthdeteriorationphysical decline ,an ultimately higher dependencyon acute services . Sailability swimming music activities.When these arereduced when he has access structured enjoyable community activities Whentheseareremovedas happenedafterFred’sdeathemotional dysregulationincrease behaviorescalate and burden familiyandsupportworker intensify Social isolation for people with complexdisability is a welldocumenteddriver mental health deterioration physical healthdecline anultimatelyhigherdependencyacute service sSail abilityswimmingmusiccommunityoutingsnotluxuries theyarethescaffoldingthatkeepshimstable outofcrisis. I urge Committee consider that framing Bill sustainability measure misleading For participants son’level complexity cutting preventive capacity building supports does not reduce costs government It defers amplifystheir hospitals emergency systems residential care.
National Disability Insurance Scheme Amendment
Submission 2082