National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2083
To the Committee, I am writing as a terrified and exhausted mother. My nine-year-old son lives with Angelman Syndrome.He experiences daily refractory seizures.requiresPEG tube feedingon aprescribed ketogenic diet.hasno safety awarenessand needs1:7direct physicalcaretostayalive.When Ilookatthe proposedNDISBillIdontseesustainability.I seerules thatwillbreakmy familystripawaymysonsafety.“Parental responsibility”does not equallife support.TheBillsuggests should absorbhis careas ordinary parentingbecause heisnine.Managingdaily seizurestfullhygieneneeds,and measuring stomach-tube fluids isnot standard maternal duty.Itishighlyspecialized carerequiresupportbeyond me.Standard “cohort caps will leave myfamily housebound(and many others).He cannot safely stepoutsideour front doorwithout trainedsupport.Cuttingthisfunding means zero community access,trappingentire household,including his siblings at home completely isolating us from society.Wiping unspent funds penalises familiesfor waitlists The BIlproposes wipingunspentin every months.In we were approved wheelchaircar modificationbut it took two years to complete due providerwaitlistshigh-end equipmentmodifications do nothappen in month.Unspent fundsshould notremoved for supply issues beyond our control.Removing self-management a threatto sons life. Choose t managewith can handpick and train workers who know son unique seizure triggerscommunication cues.If forced onto agency list with rotatingdoor of unfamiliar facesissues certainly arise Inhouse missed seizure cue or botched PEG feed directthreatt hislife.Bill passed the gap won’t magically disappearit fall entirely onme.Iwill have choice quit job professional nurse keepson alive government wont save money; just shift cost directly Centrelink services state health system when burntout parents collapse lifethreatening errors happen Beg Committee look human behind clauses Please protect flexible individualised funding children genuinely need survive Sincerely,