National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1463
To Whom It May Concern, Re: Submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1463
Without them, I do not know what breaks first. Whether it is me –already burned out, already on the edge—or our husband, already fragile, stretched across the impossible distance between to work and family. Whether it’s our son regressing without consistency of support losing words fought so hard to find surrounded suddenly strangers don’t know or read him. Whether all us quietly simultaneously ways will budget line but absolutely somewhere—in hospital mental health service system even less equipped help than one being dismantled. One cruel loss this threatens my son’s community access funding Right now with right worker beside him gets leave house goes park visits library watches world slowly tentatively begins place essential outings optional extras medically emotionally critical development mental health becomes withdrawn dysregulated regression visible days recovery weeks But something else too—something bill architects may not considered When son has support free sit siblings attend school event homework conversation crisis management My other children growing up shadow needs enormous relentless deserve parent can sometimes just be fully present lives disappear when full-time unsupported care lose brother stability mother same stroke harm does stop at door moves entire family Without community alone weight around clock respite relief brief windows allow become a mother rather than full-time crisis manager for one Other children are faster they should understand disability exhaustion sacrifice child shouldn’t have They deserve better deserving show them —for plays conversations ordinary moments childhood This takes from My cannot communicate distress stranger He nurse pain explain himself moment someone hasn’t taken time knows him. Supports stripped workers who understand gone, the device and his therapy disappears he doesn’t
National Disability Insurance Scheme Amendment
Submission:1463
become easier to care for.He becomes invisibleinthe momentsthatmattermost. AndIwillbe therealoneagaintryingto translatehimtoworldthatsnotbuilttolisten.We needthisgovernmentunderstandwhatitactuallyproposing.Itisnotinproposestotightena budget.Itproposingtoromovethelaststablestructurefromafamilyalreadylivingon edge—aburnedor mother,aFIFOfatherfightinghismentalhealthfrom afar,andathirteenyearoldboywhocommunicatesonehardwonwordatatime.If reformgenuinelygoal—andwantbelieveitis—thenpursuitproperly.Fund AACdevicesandtherapybringslifetothem.Slashartificialpriceguide.Pursue providerfraudwithrealtte.BringNDISbackintopublichands.Createsystemwhere familieslikewoursupportedstayintact—notpushedonetcutattime,towardbreaking point.Myhusbandshouldnothavechoosebetweenworkingawaykeepusfinancialy afloatbeingheretohelpcarryweightofsonscare.Ishouldnothaveneededtoturnout completelybeforeanyonenotedwedrowning.Oursonsouldnothavelostvoice becausesomeonedecidedfundinggivesthimlineworthcutting.Weanotaskingfor world. We are asking for enough.Enough to keep going.Evenoughto keeponfamily together.Enoughforthirteenyears old boytokeefindingwords.He cannotwritthisletter.SoIamwritingitboth of us—formy husband,whositting room far away from home tonight reading draft over phone crying quietlybecause he doesn’t know what else todo. Please listen tous.With everything we have left (Motherprimarycarer,andthe voiceour son deserves)