IamanexistingNDISparticipant(diagnosedAutistic/ADHD),writingtovoicemyabsolute
objectiontotheproposedlegislativechanges.
Iamthesole,completelyunsupportedcarerfora13-year-oldchildwithseveremultiple
disabilities,anda22-year-oldchildwhoalsopresentswithmultipledisabilities.
Thecumulativeweightofthisunsupported24/7carerolehascausedmyhealthtocollapse
intoFunctionalNeurologicalDisorder(FND),functionalseizures(PNES),severefunctional cognitivedecline,andcatatonicnon-verbalshutdowns.Ilivemyday-to-daylifeindeep, severedissociationandcompletelyisolatedwithinmyhome.
Wehavenoinformalsupports;Ihavenoremainingsocialnetworkandhavehadnoromantic
partnershipsforoveradecade.
Icannotentertheworkforceduetomycarerrole,andmyeldestchildhasbeenforcedintoa
youngcarerrolesinceherbrotherwasatoddler,mostrecentlycausinghertodropoutof tertiaryeducationduetothelackofstructuralsupport.
Iobjectinthestrongestpossibletermstothelegislativeexpansionof“parentalresponsibility”
definitionsbeingusedtorestrictfunding.
Expectinganisolatedparenttoprovide24/7physicalcare,absorbseveresensoryoverload,
andsustainphysicalinjuriesundertheguiseof“ordinaryparenting”isanabusive,unliveable standard.
Mysonrequiresanobjective167.5hoursofcontinuouscareandsupervisionperweek
accordingtoourformalFunctionalCapacityAssessment(FCA),andrequiresa2:1ratioto safelyaccessthecommunity.Hiscurrentfundingallowsamaximumof10hoursofweekday 1:1support,providedthecorefundingisusedfornothingelse.
Formostofhislife,hereceivednocorefundingatallbecausetheNDISclaimedhiscarewas
“normalparentalresponsibility.”
Iamunabletodriveandforyearshadtoself-fundprivatetaxistogethimtoschooland
therapiesbecausethedepartmentofeducationdeniedtravelfundingundertheclaimthatmy sonwastoohigh-needstotransportviastandarddirecttransportandNDISclaimedthiswas
theresponsibilityofourinformalsupports.TheonlyinformalsupportIhadwasmyelderly father,amanwithaseverebackinjuryonDSPwhocouldn’tdriveandwastheregisteredcarer ofhiselderlyhousemate. Epassedawayfromcancertwoyearsago,andweweren’ teven abletoaccessanychangestosupportsoIcouldcareforhim.
My13yroldhasbeenentirelyhome-schooledforthelast3.5yearsbecausethehigh-level
disabilityschoolunitheattendedwasnotequippedtosupportachildpresentingwithASD
Level3,ADHD,PathologicalDemandAvoidance(PDA),Tourette’s,speechandlanguage
disorders,OCD,andnowpediatricdepression,chronicPTSD,andtrauma-induced psychosis.
Heexhibitsalternatingfood,fluidandtoiletingrefusal,resultinginperiodsofsevere
dehydration,malnutritionandmedicalcrisis.Formostofhislifehehassleptamaximumof2-3 hrsanightcollectively.Thisisthebestifnights,thereweremanynightswedidnotsleepatall.
Hecurrentlystillhasbrokenerraticsleepandsleepsamaximumofsixhrspernight,withan
occasionallynapofuptotwohrs.
Heisa13-year-oldboywhosewholelifehasbeenderailedbecausehehasbeen
systematicallyunder-supportedbytheverysystemsupposedtohelphimthrive.
ThecareIprovideisintensive,high-levelclinicalcare,notstandardparenting.
TheNDISmustfundthisstructuralgapratherthanforcingfamiliesintocompletephysical
collapse.
Ourhomehasbeendamagedrepeatedly,notjustfrommyyoungestson’smeltdowns,but
fromhimhappilyexistingwithinthespace,becauseheisaseveresensoryseeker.
Thisconstantphysicalimpactalsocontributestoalevelofdailymessthatfallsfaroutsidethe
boundariesofnormalhomecleaning.Isimplycannotkeepupwiththisheavymaintenance whilekeepinghimsafeatthesametime.
Crucially,theresultingdisrepairofourhomeandmyson’svocalbehaviorshavecausedour
neighborstobecomeextremelyhostileovertheyears.Thishostilityhasescalatedtothepoint
wherewehavehadtomakeformalpolicereportsduetooneneighbour’ saggressive behaviourtowardus.
Duringmyson’ smeltdownsIhavemyselfsustainedmultipleseriousinjuries.This aggressioncausesmysontodescendintodepressiveguiltandshamespirals,hedoesn’ t wanttohurthismummy,butwheninastateofextremedysregulationandsensory overwhelm,hehasnocontroloverhimselfandwillhurtus,himselfanddestroyourhome.
Thesesituationscouldhavebeenavoidedalmostintheirentiretyifheandourfamilyhadbe
properlysupported.
Furthermore,IobjecttothenewrigidboundariesbetweentheNDISand“mainstream
services.“Publicmentalhealthsystems(likeCAMHS)arestructurallyincapableofproviding safe,accessible,orneurodivergent-affirmingcareforthisfamilyprofile.
Attendingpublictrainingclinicsdirectlyharmsmyfamilyduetoinvasive,unaccommodated
sensoryenvironmentsandacompletelackofdisabilityspecializationamongtrainingstaff.
TheNDISmustcontinuetofundprivate,specialized,in-homesupportsratherthantryingto
handfamiliesofftofailingmainstreampublicsystems.
Mineandmychildren’sconditionshaveonlyworsenedduetoNDISunder-support;bothof
mychildrenhaveexperiencedsuicidalideation,andmyyoungesthasmaderepeated attemptsonhislife.
Iftheselegislativechangesgoahead,ourhouseholdwillbarelybeabletosurvive.
Thegovernment’sfocusshouldremainontargetingunscrupulousproviders,ofwhomwe
havebeenthevictimsourselves.
Inourexperience,theoffenderswerelarger,registeredcompanies.
Wehavefoundsignificantlymorerespect,care,andaccountabilitythroughsmaller,
independentproviderswhoapproachtheirworkwithtruededicationandpersonal accountability.
Finally,Iobjecttotheincomingrestrictivelistsof“approvedsupports”thatexcludeeveryday
livingexpenses.
Foranaggressive167.5-hourcareprofiledrivenbysevereautism,essentialsensoryitems,
bedding,andclothesaredestroyedatfivetimestherateofaneurotypicalteenager.By narrowingthedefinitionofwhatis“directlyrelated,“thegovernmentistriggeringimmediate householdcollapse.
Anothersmallexampleoftheimpactoffundingcutsistherecentremovalofdisabilityspecific
hairdressing.Noneofmyfamilyhavebeenabletoreceiveanyhairmaintenance.Thisisnota luxury.Ourappearanceaffectshowotherstreatus,wesimplycannotattendaprofessional salonandexpectingnondisabilityspecificbusinessestocompletelychangethemselves,shit downforthedayzremoveallsharks,smellsandnoisyequipmentnottomentionanyother customerstocreateasafespacetoreceiveanormalhaircutisridiculous.
Inowhavetocutourhairathome.Ahomewherewenormallydonothaveaccessiblesharps
forsafetyreasons,andmyself,someonewithnohairtraining,hastoattempttocutachildwith Tourette’ shairbecausewithoutregulartrims,itbecomesahugesensorytriggercausing meltdownsandthekindofharmIhavestatedabove.
Iurgethecommitteetowithdrawtheseamendments.
TheNDISasitstandsnowhasnothelpedmyfamily,themodelandgatekeepinghascreated
moreproblemsforusthanweoriginallyfacedandrobbedmychildrenofachildhoodand potentiallytheirfuture.
Itmustnotbecomeevenworsethanitisnow.