I am an existing NDIS participant (diagnosed Autistic/ADHD), writing to voice my absolute objection to the proposed legislative changes.

I am the sole, completely unsupported carer for a 13-year-old child with severe multiple disabilities, and a 22-year-old child who also presents with multiple disabilities.

The cumulative weight of this unsupported 24/7 caring role has caused my health to collapse into Functional Neurological Disorder (FND), functional seizures (PNES), severe functional cognitive decline, and catatonic non-verbal shutdowns. I live my day-to-day life in deep, severed dissociation and completely isolated within my home.

We have no informal supports; I have no remaining social network and have had no romantic partnerships for over a decade.

I cannot enter the workforce due to my caring role, and my eldest child has been forced into a young carer role since her brother was a toddler, most recently causing her to drop out of tertiary education due to the lack of structural support.

I object in the strongest possible terms to the legislative expansion of “parental responsibility” definitions being used to restrict funding.

Expecting an isolated parent to provide 24/7 physical care, absorb severe sensory overload, and sustain physical injuries under the guise of “ordinary parenting” is abusive, unliveable standard.

My son requires an objective 167.5 hours of continuous care and supervision per week according to our formal Functional Capacity Assessment (FCA), and requires a 2:1 ratio to safely access the community. His current funding allows a maximum of 10 hours of weekday 1:1 support, provided the core funding is used for nothing else.

For most of his life, he received no core funding at all because the NDIS claimed his care was “normal parental responsibility.”

I am unable to drive and for years had to self-fund private taxi to get him to school and therapies because the department of education denied travel funding under the claim that my son was too high-need to transport via standard direct transport and NDIS claimed this was

• therespnsibilityofourinformalsupports.Theonlyinformalsupportihadwasmyelderly father,amanwithaseverebackinjuryonDSPwhocouldn’tdriveandwastheregisteredcarer ofhiselderlyhousemate.Epassedawayfromcancertwoyearsago,andweweren’ teven abletoaccessanychangestosupportsoIcouldcareforhim.

My13yroldhasbeenentirelyhomeschooledforthelast3.5yearsbecausethehighlevel disabilityschoolunitheattendedwasnotequippedtosupportachildpresentingwithASD Level3,ADHD,PathologicalDemandAvoidance(PDA),Tourette’s,speechandlanguage disorders,OCD,andnowpediatricdepression,chronicPTSD,andtrauma-induced psychosis.

Heexhibitsalternatingfood,fluidandtoiletingrefusal,resultinginperiodsofseverede- hydration,malnutritionandmedicalcrisis.Formostofhislifehassleptamaximumof2-3 hrsanightcollectively.Thisisthebestifnights,therewere manynightswedidnotsleepatall. Hecurrentlystillhasbrokenerratic sleepandsleepsamaximumofsixhrspernight, withan occasionallynapoftotwo hrs.

Heisa13-year-oldboywhosewholelifehasbeenderailedbecausehehasbeen systematicallyunder-supportedbythevery systemsupposed tohelphimthrive.

ThecareIprovide isintensive, high-levelclinical care, notstandard parenting.

TheNDISmustfundthisstructuralgapratherthanforcing familiesinto completephysical collapse.

Ourhome has beendamagedrepeatedly, notjustfrommyyoungestson’smeltdowns,but fromhimhappilyexistingwithinthespace,because heisaseversensoryseeker.

Thisconstant physicalimpact alsocontributestoalevel ofdailymessthatfallsfaroutside the boundariesofnormal homecleaning. Isimply cannotkeepupwith this heavymaintenance whilekeeping himsafe atthesametime.

Crucially,the resultingdisrepair ourhome and myson’svocalbehaviorshave causedour neighborsto becomeextremelyhostile overtheyears.Thishostility hasescalatedto thepoint

• 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.

• For an aggressive 167.5-hour care profile driven by severe autism, essential sensory items, bedding, and clothes are destroyed at five times the rate of a neurotypical teenager. By narrowing the definition of what is “directly related,” the government is triggering immediate household collapse.

• Another small example of the impact of funding cuts is the recent removal of disability specific hairdressing. None of my family have been able to receive any hair maintenance. This is not a luxury. Our appearance affects how others treat us, we simply cannot attend a professional salon and expecting non-disability specific businesses to completely change themselves, shit down for the day z remove all sharks, smells and noise equipment not to mention any other customers to create a safe space to receive a normal haircut is ridiculous.

• I now have to cut our hair at home. A home where we normally do not have accessible sharps for safety reasons, and myself, someone with no hair training, has to attempt to cut a child with Tourette’ s hair because without regular trims, it becomes a huge sensory trigger causing meltdowns and the kind of harm I have stated above.

• I urge the committee to withdraw these amendments.

• The NDIS as it stands now has not helped my family, the model and gatekeeping has created more problems for us than we originally faced and robbed my children of a childhood and potentially their future.

• It must not become even worse than it is now.