Submission

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission: 1724

Introduction:

I am writing this submission at Sam after fewer than two hours of sleep due to being awake since around midnight sitting up all night taking care of our non-verbal son who has autism.

My name is [redacted]. Both boys are autistic participants within NDLS between five-eight years old; homeschooling them instead public education system dismantling their wellbeing health ability flourish decision taken lightly right choice means me their mother teacher therapist’s support case manager overnight carer every single day alone.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1724 the goalposts moved.

• I have not been able to see my neurosurgeon in six years.He is a 1 .5 hour drive away.On the days when my pain is at its worstand Ihavenotslept,I do n ot considerit safetodrivethat distance.SoIdono t go.The systemthatsupposedtosupportpeoplewithdisabilityhas,inmycase,madeimpossibletoaccessthesupport—notbecausemiconditionsarenotrealornotserious,but becausetheadministrativeburdenofprovingthemfallsonapersonwho hasnocapacitylefttocarryit.Iamqualified nurseanda qualifiedcounsellor.Iunderstandwhatself-caremeansI understand what burnout means.I am living it.T heNDIS h as determined that becaus eIm capableparentIA m responsibleforall of this—theovernightcare,the sensoryregulation ,thehomeschooling ，ther apy carry-over,thest oodshou managem ent， them edicaladvocacy,t ehundred hoursper year administrativework per childjustt os accessservices.Theyhaveassessedmysituati onusingastandardwhatisreasonable andnecessarytha ndoesno ta ccountfor th fact tha t IAmdoin gtheworka teamprofessionalsalone withchronicpain,on twohours sleep every day.

’s current funding provides4 5 minutes Occupational Therapy p erf ortnight.Hisplanhasonow run outoffundsentirely.He ha s halfan hourspeechtherapyp erweek for achild who cannot speak. He is non-verbal buthe can sing .He hastbeautifultoneHismusic therapistbelievesthereisa path to communication throughthat—butthefundingissgone.Acommunicationdevice thatcouldchange his lifehasnotbeenprovided.The therapists whos ee him all recommend farmorehoursthanarefunded.N oneofthatist reflectedinw hatherreceives.My concern aboutthis Billisanotabstract.It isthis:thesupports mysons currently receive are already insufficient.T heyalreadydo not cover what an d need.Cuttingthem further—reducing fundingsocialandcommunityparticipation ,tighteningeligibility,removingappealrights,givingaministerunilateralpowerto reduc epl ann budgets without parliamentary oversight —would n ot save money.Itwouldshiftcosts.Ontohospitals.On toc risiservicesOntomeAndIhave nothinglefttogive The203 independent review saidclear lytha tfoundationalsupports must beestablishedbeforeany changes tore ligibilityor planfund inga remade.Thosesuppor ts do nox existyetThe government has set aside th atroadmapwithoutexplanation.Meanwhile16 0，O peoplearetoberemovedfrom the scheme andaverageplans reducedbyfive thousand dollars.None of this was takent othe Australian peop leattherolection.Therewasnoman dateforchangesofthesescale.

Peoplewithautismmake upclose tohalfallcurrentNDISparticipants.TheProductivityCommission whichdesignedthschemeidentified autisticpeopleas exactlythep opulationthen DDIS w asbuilttoserve. My sonsarenotedgecases.Theyarethereasonthisschemeexists .Th claim thatchildrenlike anda were nevermeanttoBe coveredisfalse ， an dthemeet shouldsayso Ialso wantthis committee understand what Bill means forcarerslikeme.T hegovernmenthas framedcutscommunityparticipationandinhomesupportasmatterparental responsibility.W antto bedirectaboutthatframing:IA m not asking N DIStoparentmy children.I amaskingitrecognise thatcaringfortwochild ren withhighcomplexneeds whilemanagingseriousprogressive conditions my own withoutaccess any support myself is n ot sustainable Thecostgetting wrong willno t appear inNDS budget.Itwillappearinemergencydepartmentsincarer

breakdown, in children whose needs go unmet because the person caring for them has nothing left. I nearly at that point., should n,ot be~