National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission: A parent and primary carer capacity: Primary carer; parent of two children with active NDIS plans location: Regional NSW date: May 29th,
Introduction and Family Context
I am a stay-at-home primary carer living in regional community nsw approximately kilometers from nearest major service centre partner works full time both my childrens have active ndis plans i day-to-day manager family’s engagement scheme coordinating therapy appointments managing plan reviews maintaining provider relationships attending school meetings carrying administrative practical load comes supporting two children disability region limited services want describe our families situation detail believe represents exactly kind this bill has been tested against. two autistic their autism undiagnosed years during that time developed severe separation anxiety direct consequence unidentified unsupported autism environment did understand what dealing it drove extended serious school refusal both requiring psychological medical intervention sustained period early years consumed anxiety refusal both missed window which naturally form peer bonds stable enough engage socially peers around them had already formed without them result ostracised peers incidentally but as pattern ostracism was related directly social differences produces years absence dysregulation they peers not understood enrolled small independent school specifically because its therapeutic approach smaller class sizes better mainstream setting many respects equipped everything son’s presentations beyond training resources manage rather support needed labelled problem child daughter tried five years consistent effort presence still accepted by her at end move now public schools admission failure deliberate decision give access larger group means more chances find connection, more social
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2148 diversity, and less intensity when dynamics turn. It is our best current option for helpingthem build the friendships they have not been able to form. That move is only possible because of the NDIS. Both children receive weeklyoccupational therapy and monthly psychology sessions.Paediatric appointmentsoccur every two months,funded privately at our own expensebecause therenoNDIS pathwayforthat cost.The emotional regulation skills that occupationaltherapyis buildingare what makea mainstream school environment navigableforeachildrenwho previously couldnot sustainschool attendanceat all.Without thosesessions,the mainstreamschool movedoesthworkWithoutthe NDISOthersessionsdo nophappen.My decisionto remainathomeas a full-time carerrather than returntoworkwas notas straightforward.It carriesreal personalcost— financialprofessionalandemotional.But it istherightdecisionformychildrenasthis stageof theirdevelopment,andit issustainable — barelybut sustanably-becausethefundedsupportsintheirNDSIplansaredoingwhattheyaresupposedtodo.Mychilrden aregetting helptheneed.Weamakingprogress.WeanewerylikelytolosethaaccessunderthisBill.I amwriting thisbecausel wantThe Committee tounderstandwhatahatwouldmeaninpractice—notasan abstraction, but forspecific family who foughtalongdifficult processget onto thenDSDS and whofinallycarefullymakingitt work.
2.THe NDIS Access ProcessGetting both childrenonto the NDis was notstraightforward. Itwasa longcomplexprocessrequiringsignificant documentation professional reportsandsistentadvocacy.Families do noarrival atNDIs easily.By time child has active plansfamilyhas alreadynavigate diagnosis specialist referrals functional assessmentsandan application processthat assumes level of organisational capacitysystem literacy that manyfamilies need scheme most donot haveWe got thereBut hard.The idea families like ours gaming system for discretionary extras isnot consistent with any part our experience.supports in my chidren’s plansexist because they assessed necessary by qualified professionals approved through formal proce.Theyare being usedThey workingprospect losing them—through tighter access criteria frozen plans ministerial funding cuts or automated sys does captureour circumstances—is theoretical concern.Bill makes likely.
RegionalAccess to ServicesLiving approximately80 kilometres from nearest major service centre concrete consequencesfor familys accessto disability supports.PoolNDSI registered providers area small.When provider leaves region closes their booksor reducestheirservicearea often local alternative.We experienced this.Waitlists paediatric occupational therapy psychologyspeechtherapy arelong.Wehave waited months services metropolitans canaccess weeks.
National Disability Insurance Scheme Amendment Submission
Traveling to appointments means taking children out of school.
Regional communities like ours often have higher than average proportions of families with children who need services harder to access outside metropolitan areas due partly lower housing costs drawing these families closer together.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2148
Both of my children are in new school environments that their current plans were not built for. The supports appropriate for a small therapeutic school are not the same as those required for a larger mainstream public school – particularly for autistic children whose school difficulties were serious enough to require medical and psychological intervention.
The early intervention principle in the NDIS Act is explicit: act before deterioration because early action reduces long-term harm and cost. The reassessment threshold in this Bill requires proof of substantial deterioration before action is permitted. Those two principles directly contradict each other, and both are currently in the same Act.
For a child with a documented history of school refusal and severe separation anxiety, the trajectory from early warning signs to full crisis is not long and not easily reversed.The ability to adjust a plan increase support add service— keeps a childin school.A90-day response windowand adeteriorationthreshold make proactive support structurally impossible.Ina regional area where waitlistsare alreadylong , daysis also nolongdayspractice.It istodaybefore processbegins may itself take weeks.I askthe Committee torequire Government demonstrate howthis thresholdconsistentwithearlyinterventionprinciples,and introduce specific protectionsforautisticchildren undergoingschool transitionsor historiesof schoolfailure .
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2148
Reports indicate that community participation budgets are already scheduled to be cut by 50% and capacity building daily activities by 10% from October 2026. For autistic children who have been socially excluded for years, community participation is not adiscretionary extra.It isthe direct therapeutic objective—buildingthe capacityto participate with peers in structured settingsist partof what their plansare designed toeachieve. A ministerial determination reducing these categories doesnot assess whethermy children’s specific needshave changed.I t applies teveryone.For afamilythat foughta long process to accesstheschemeand isActive usingthefunded supports asintended—a blanketcutbyministerialedecree,with no individual assessment anono parliamentary oversight,is nota sustainability measure.Itisa removal of somethingtha was assessedas necessary. I ask the Committee torequire sunsetting.parliamentary disallowance,and mandatoryimpactassessment before any suchdetermination can take effect.
Automatic Plan Renewal Without Review(Schedule I , Part S)
Plans automatically renewed assimilar copies.with unspent funds removed.will nol reflect them currentneeds either my children.Both childrentsplans were builtfor a school environment they havelleft.An automatic renewalisan documentbuilt one reality.reissued fora different onewithnoon having checkedwhether it still fits.Unspentfunds are nowaste.They arer buffer that allows family respond change need without waiting months for formalprocess.In regional area withlong waitlists.removingbufferremoves only marginfamily has act quicklywhen somethings changes.Combined 90-day reassessment window and threshold requiring substantial deterioration.automaticrenewal at frozen funding level means families in our situation have practical mechanism keep plans aligned realty—untilsomethinghas already gone seriously wrong.
Codificationof Parental Responsibility (Schedule l .Part6)The Bill defines what parentsare legally expected to provideand instruct CEO not approve supports whose primary purpose is reduce parental burden belowwhat reasonablyexpected.I am full-time carer.left paid employment becauselevel supportmychildren require cannot managed alongside work.My partner worksfull time.Together we manage two autistic childrenwith active NDIS plans.weekly monthly therapy appointments both.private paediatricappointments own expense.two school transitions.daily management anxiety emotional regulation home,ongoingwork helpingtwo build skills connections do easilythem.Stayinghome carriesreal personal cost.It financially constraining.affects my professional identity sense independence.There days when genuinely hard.am writing this claim exceptional virtue.writing decision sustainable ifnot comfortablebecause children getting
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2148 the help they need and making progress. The NDIS is what makes that progress possible.
The provision requiring the CEO to consider ‘the desirability of maintaining and strengthening informal supports rather than replacing them with funded ones’ treats what I provide as a resource the system can lean on more heavily. It does not ask what that costs, what our limits are, or what happens when we reach them.
Our children’s history of extended school refusal is a documented record of what our family looks like when the support system is inadequate. Both required professional intervention to stabilise. Without the NDIS, the most likely outcome for our family is homeschooling ––not by choice but because we will have no other option. Two autistic children who cannot access adequate support in a school setting, in a regional area with no funded support to draw upon. That is where this Bill points us. The Productivity Commission built the economic case for the NDIS on whole-of-government modelling: invest in formal supports now and avoid far greater downstream costs from carer breakdowns lost workforce participation chronic reliance crisis services.I ask Committee scrutinize whether this Bill consistent rationale projected savings figure accounts Centrelink mental health services hospitals schools systems absorb families ours alternative left.
10 Automation Accountability (Schedule)
Bill provides automated planning decisions methodology data inputs appeal pathways ministerial instruments Parliament disallow.
Our situation involves two autistic children different presentations overlapping interacting needs across multiple therapy disciplines region context affects service access primary carer providing substantial daily support which it doesn’t measure None straightforward model algorithmically Planning problems NDIS caused too much human judgement they caused inadequate human planners not trained resourced cases evidence placed before them Replacing automation does fix problem scales removes accountability at same time If an automated produces inadequately plan one my child I can’t ask why point missed Left wait threshold requiring deterioration anything done Children histories mine workable Require full public disclosure any automated planning method commences including data error correction processes pathway accessible participants family.
Conclusion Both of our children are autism undiagnosed years during developed severe separation anxiety drove extended school refusal
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2148 created them to miss the window in which peer bonds form. By the time they were stable enough to engage socially, you had been excluded both ostracised —because their disability—inthepeer groups availabletothem.The small therapeutic schoolthatwas supposed help didnot haveresources supports my son’s presentationsanddid protectmy daughter from five years social rejection.They now moved mainstream public schools with larger peer groupsmore chances find connection That move possible because weekly occupational therapy monthly psychology funded throughNDIS private paediatric appointments fund ourselves It working Slowly carefullyitisworking.We live regionalNSW significant distance nearest major service centre limited provider pool waitlists quickly fought long difficult process access NDISOntoaccidentconvenience We on qualified professionals assessed our children documented needs formalprocess determined those needswere real ThisBillthroughtighter functional capacity assessments stripped environmental context reassessment thresholds require deterioration before action auto renewed plans no longer fitchildren circumstances scheduled50% cuts community participation funding unchecked ministerial power over support categories greater legal reliance informal carersupport family already atcapacity will all likelihood removeour accessto scheme or reduce it point where functions us WithoutNDSIsupport we anotherfamily forced into homeschooling have option Two autistic children Aregionalcommunity Nofunded support. No alternative I sustainabled NDIS fraud prevention asking Committee ensure sustainability not built backs families who needed the most accessedlegitimate and using exactly intended The gave door Please do close Thank you opportunity make this submission. A parent primarycarer Regional NSW 29 May