National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2044
Submission to the Senate Community Affairs Committee Regarding Proposed
NDIS Legislative Reforms and Future Changes to the NDIS Submitted by: I am writing this submission as a disabled single mother, full-time carer, and NDIS participant. My daughter is also an NDIS participant with extremely high support needs, including complex medical care, mobility impairment, and near 24-hour support requirements. Iam deeply concerned about the direction of the proposed NDIS reforms and what they will mean for vulnerable participants and families like ours. The NDIS is already failing us now, before these additional reforms and restrictions have fully taken effect.I fearwhat comes next.I fear homelessness.I fear institutionalisation.I fear being physically unableto continue caringformydaughter.Imayfearmydaughterveringeforcedintounsafe or inappropriatecarearrangementsbecausepracticalcommunity-basedsupportscontinue tobdenied.Mostofall,Ifeara futurewheredisabledpeopleareonceagainexpectedtosurviveon exhaustion,sacrificeandunpaidfamilylabourwhilegovernmentsdescribeitassustainability.ThesesystemicfailuresundermineAustralia’sobligationsunderthe United Nations Convention onth e Rights o f PersonswithDisabilities(UNCRPD),particularly: * Article19 :therighttoliveindependentlyandeincludedinthecommunityArticle28: theright toanadequatestandardo flivingandsocialprotection
Article5:equalityandon-discrimination *
Article7:t h rightschildrenandyoungpeop le withdisabilityMy daughterhasnowwaitedmorethan sixanda halfyearsforebasicsupportsincluding:apowerassist wheelchairbathroommodifications* anaccessible ramp*t emporary accommodation supportduringrenovationsThese arenotluxuryrequests. Theseares essential disability supportsdirectlyconnectedtoher independence,dignity, safety and participation in community life.Instead , ourliveshavebeenconsumedb y:endless delaysrepeatedevidence requestsinternal reviewstribunal hearingsadministrative errorscontradictoryNDIA decisions inaccessible systemsescalating emotionalfinancial distressForoversix years,wehavebeentrappednbureaucracy whilemydaughter’slife hascontinuedtopasby.
She missedopportunitiesattendschoolproperly,buil t peerrelationshipsaccess hercommunity independentlyandexperience normal parts ofyoung adulthood
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2044
because she remains physically trapped by a system that acknowledges she needs support but continually obstructs access to it. The cumulative trauma of spending more than six years in constant conflict with the NDIA cannot be overstated. Families like mine live in permanent uncertainty. We are forced to repeatedly prove permanent disability.We live under constant threat of funding changes, averviews,reassessmentsand appeals.Years become consumedby paperwork, evidence gathering anda nd fightingfor supportsthat professionals have already agreedare necessary. This prolonged administrativeanda legal stresscauses enormous psychological harmto both participantsa n d carers.Atthe centreofthis issueis one devastating reality:Th eNDI A has effectively created asituation where my daughter can eitherhave her independenceor sh ec an hav h er motherphysically capableo f continuingtoc ar ef orher.Apparently wear enot allowedt o ha veboth.Because right now, I physica lly pushh ers manual wheelchair everywhere.That daily physical labour is destroyingmy body.Ilivewithongoing injuries including backinjuries ,elbow injurie s,a nk lei nj uries and chronicphysical strainfrom yearsof full-time caring .Im adisabledm yselfando NDIS participant.My daughterd esperatelyneeds here power assist wheelchairsoshecan safely move independently andreducethe enormou sp 1 ysicalburden currentlyplaced on me.After more than six years offighting,thewheelchair,ramp a nbathroom modifications were finally approved.But despite this the works still cannot proceed because then DIA refuses to fund approximately $5.00 t oc over m yportion of temporary accommodation while our home becomes inaccessible during renovations.T hat i sa ll that stands betweenm ya ughterandth eindependence shehas alreadywaitedoversixyearsfor.Atsame time th END IAa swillingto approve vastlymore expensive alternatives. Thisiswh erethesystembecomesnotonly harmfulbut completely irrational.Isourced asignificantlycheaperanda n dpractical solution throughalocalnon-registered builderwho could completeth eexact samemodificationsusingthe exact same plans forapproximately$75,000.The registeredNDIS provider quoted ove r$100，knoo nt h at is ada fferenceofmor ethan$25 ，000.Thelocalbuildercouldalsocompletet he workin three weeks insteadoffive,reducingaccommodationcostsevenfurther.Butbecause The local builder can also complete the work in hree weeksinsteadofi ve ,reduc ing accom modation costs even further .But becausethe builderi s not NDIS registere,dthen ND I Arefusesallowthisoption.Atsame tim ethey refusefundthem odest accommodati onamount requiredfore ther egistered option to proceed. The resultisa bsurd and deeply irresponsible.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2044
The NDIA is willing to spend:
- over $100,000 on inflated building costs.
- over $28,000 for temporary supported accommodation with unfamiliar workers.
- over $66,000 for 24/7 supported accommodation away from me.* potentially hundreds of thousands if the hospital system becomes involved But they refuse to approve approximately $5,500for the safest, cheapest and most appropriate solution.There is no common sense int hissystem anymore.This experience demonstrates a much larger problem withintheNDIS.The systems claims t o value “choiceandcontrol”,but increasingly participantsare being funnelled into rigid provider systems that remove flexibility,inflatecostsand ignore real-world practical solutions. Myexperience clearly demonstratesthat forcingparticipantsinto“registeredonly”systems does not automatically improve quality or safety.In many cases,it simply increases costsdramatically while reducing participant autonomy anda ndflexibility.Theseproposed reforms claimto focus onsustainability,but sustainabilitycannot simples mean restrictingparticipantswhile allowing systemic inefficiency ,inflatedprovider pricinganda dadministrative waste toc ontinue unchecked. The current systemon often punishesfamilies who tryt findpractical,cost-effective solut ions .Thatisnot reform.That istydysfunction.I am also extremely concerned aboutth e increasing relianceon th ec onceptof“natural supports”.For families like mine,” naturalsupports ” means unpaid labour,e xhaustionandsacrifice,u sually carried by women.Itmeansmothersleaving employment becausethesystemistoo inflexibletoccommodatereal caringresponsibilities.itmeanswomen ignoringtheir own disabilities,i njuriesa n dhealth conditions becauset hereisonobody else to step in.i tm eanscarersbeingpushedbeyondphysical andemotional limitswhil egovernmentsquietlyshiftmore responsibilitybackonto famil ies.As ad isabled single mother with no meaningful informal support s, I already carry the overwhelming majority of my daughter’s care responsibilities.Thecurrentsystemalsopreventscarerfrommaintaining sustainableemployment, protecting theirown long-term healthand financial stability,and participating fullyineconomic a ndcommunity life.These refor ms risk pushing famili eslike m ine into complete collapse.Women anda nc ar ers arealready carrying far too much.Theproposed reformsrisk making this worseby: *increasing reassessment powers narrowinge ligibility pathways tightening definitions o f whatsupportsa r econsiderdfundable increasing planner discretion * reducing flexibility * increas ing relianceoninform al
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2044
supports restricting participant choice and control expanding ministerial powers over support definitions making systems even harder to navigate for people with complex and fluctuating disabilities. Disability and caring capacity are not static Health fluctuations Capacity fluctuations Carer burnout functional ability depending on physical health stress exhaustion medical complications access Rigid assessment often fail capture realities complex disability chronic illness care relationships. I am also deeply concerned about safeguarding The NDIA has repeatedly pushed alternatives involving unfamiliar workers environments despite my daughter having highly complex needs Continuity matters Trusted Safety Forcing into familiar provider can create enormous risks particularly vulnerable communication, medical or cognitive support needs System currently rewards bureaucratic compliance human wellbeing That is dangerous I am also deeply concerned increasing planner discretion inconsistency of NDIA decisionmaking Participants receive vastly different outcomes similar evidence Planners frequently decisions consequences lives clinical understanding complexity override professional evidence experienced This creates uncertainty inequity ongoing harm extremely proposed reforms will further reduce independent review appeal mechanisms Without strong external oversight participants become increasingly inconsistent policy interpretations that prioritise cost containment over human need Review rights loophole essential safeguard Disabled procedural fairness transparency accountability urge Committee recognise current problems within NDIS caused by receiving too much support They inefficient administration provider overcharging inaccessible processes poor decision-making unnecessary adversarial reviews delayed approvals inflexible systems failure listen expertise lived experience Disabled should be
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2044
punished for systemic failures created by the structure of the scheme itself. I also urge to recognize the very real risk of institutionalization when practical, community-based supports are denied.My family’s experience demonstrates that the system often willing to fund far more restrictive,segregated or crisis-driven responses rather than practical supports allowing disabled persons remain within their homes and communities. The NDIA was considering: excessive supported accommodation with unfamiliar workers * provider-controlled environments * hospital alternatives before approving modest supports needed keep my daughter living continuity,familiarity,dignity her own community.This directly contradicts principles inclusion,a utonomy,and participation which were upheld.NDIS failing participants Committee protect participant choice control access external review appeals reduce repeated reassessments evidentiary burdens reject excessive reliance informal natural”supports ensure genuine co-design with disabled people carers improve safeguarding,continuity support allow greater flexibility cost-effective solutions address overcharging market inflation realize realities families multiple members disabled reforms not push toward crisis segregation,institutionalisation,hospitalisation due lack appropriate supports The NDIA has spent six years teaching independence negotiable health safety wellbeing expendable.We asking basic dignity,personalized support ability live safely our community System spending hundreds thousands dollars on crisis response $5 000 practical support abandoning them Regards A extremely burnt out NDIS Participant Mother a NDIS Participant