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

Submission 1595

Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026 Submitted by: A Parent Carer of an NDIS Participant Submission to the Senate Inquiry: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 My name is redacted , and I am the mother of a 24-year-old son with severe and complex disabilities. He is entirely dependent on the National Disability Insurance Scheme to live safely and with dignity in his own home.I am writing this submission not as a policy expert, not as a lawyer,and not as a politician .I am writing as a mother who liveswiththe daily realityof what adequate —and inadequate—NDISsupport looks likein practice.

I wantto be clear atth outset:I understand that thendis needs stronger governance.I suppor tefforts toreleminate fraud,wasteandrortingthatdamagethescheme’s integrity.Butiam deeply concerned ththenationalDisabilityInsuranceSchemeAmendment( Securing them ndisforFutureGenerations )Bill 2026,introducedtoparliamenton May,will cause serious harm—and insome cases,dath—to participants witheverseands complex disabilitie sif passed without significant amendment.## AboutMy SonAndOur Family Mysonistwenty-fouryears old.He hasa neuromusculardisease resultsin extrememuscle weakness.Hecognitively unaffectedhasgraduatedwi hdegree.Without appropriate NDIS funding,hencannot bathe,eatsafely,m anagehis health ,or remaininhishom e.Heisan statistic or abudgetline Heispersonwhose life-and whose safety-dependsentirely on the decisions made withinthis scheme.Our familyhase xperiencedcuts to my son’sN DISbudgetwhich ha impactedons hisSDA funding.These cutswere notther esult of hisneeds decreasing—they didnot.They weretheresul tsofdecisionsmadebyplannerswho,inmy experience,lackedany clinicalunderstandingofmyson’sspecificcondition, itsp rogression,andwhatlevelofs upport isrequiredtokeep himsafe.Wewere given no meaningfulclinicalrationale.We were told ineffectthatthescheme neededtocutcosts.

The impacto fthese cut so n ourfamilyha beenprofound.Ourfamilyhadt ofill inthegaps—atsignificant costton ou rhealth,employmentandour fami ly’s financialsecurity.I amno lone Across Australia,familieslikemy are quietly absorbingthe consequences off underfund edplansoftenatenormous personalco st andinsilence,becausewearetooexhausted too frightenedtospeakup.## MyConcern sAbout th ProposedLegislation 1.Financial sustainabilityis now embedded as a legal test for support

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

Submission 1595

The Bill amends the NDIS Act to require that supports be provided “so far as is consistent with the financial sustainability of the scheme.” These words have never appeared in the Act before. For the first time, the budget not just my son’s clinical need becomes part of the legal test for whether his support is ‘reasonable and necessary.’ I am a mother, not a lawyer, but I understand what this means in practice. It means that a planner or an algorithm could look at my son’s plan and determine that what he needs is not what the budget allows. It means that the question ‘what does he need to live safely?’ could be replaced by “‘what can we afford to give him?’” Those are not the same question, and for people with severe disability, the gap between them can be the difference between life and death.

Algorithmic and non-clinical decision-making The Bill introduces a new framework planning system with a \“support needs assessment tool\”and a \“budget method\”that will generate participant budgets.Iam gravely concerned aboutthe increasing reliance on automated processes and tools inplaceof genuineclinically-informed humandecisionmaking.Myson’edisabilityiscomplex.The riskstohishealthifhissupportreducedare real anda immediate.Noalgorithmandonoplannerwithoutspecialisedclinical knowledgeofofhespecificconditionhasthecapacitytounderstandthat.Myson has had decisions overturned one review despite allied health medical professionalsmedical evidence

The NDIS was builtona promise thatevery personwithdisabilitiwouldbeassessed individually,ontheir own merits ,witheirownneedsatcentrer ofthedecision.A tool-generated-budgettha appliesa mathematicalformula toc oplexhumanneed isnot individualassessment.ItisanotherfounderNDISoncewarned in anothercontext,“robo-planning”,wehavealreadyseen,wit robo-debt what happens when governmentappl algorithmsvulnerablepeople’slives without adequate clinical an duman oversight.

Cuts to participation capacity building supports From 1 October206, theBillwillreduce budget allocations for social civic community participationsuppor by5 per cent,andcapacitybuildingdailyactivitiesbyper cent. TheGovernment hassaid these changes “‘wil not impact supportsthat are essentialtocritical careand daily living.”’

With respect that assurance doesnotreflectthe lived reality people with complex disability.For my sonparticipation and capac itybuildingsuppors are no optional extras.Theyarethesupportskeep him connectedtohiscommunityallowhim attendmedicappointmentsan participatein hiscommunit Cuttingthes suppostrdoesno save money long run It shifts costs –t hehealthsystem tostatemental healthservices,toshospitalsandfamilies like mine The Government has projected savings $378 billion over four years from this Bill But where is whole-of-government accounting Where calculationofwhat Medicare state hospitals mental health services Centrelink unpaid family carers will spend picking up NDIS stops funding Productivity Commission built original caseforNDIS exactly kindwhole of- govern mentcostmodelling.I urge Committee demand same rigour now.

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

Submission 1595

Broader Ministerial powers and the removal of human oversight

The Bill also proposes broader powers for the Minister and the NDIA that may reduce participant choice and control, and enable budgets to be set and adjusted with less individual scrutiny. I am alarmed by any legislative architecture that removes human beings from decisions that will directly determine whether my son can safely live his life in an environment that meets his complex needs. The NDIS was designed to be a human scheme. A scheme where a person sits down with another person and works out what that individual needs to live well.Every provision in this Bill that replaces a human decision point with a ministerial determination, a budget method or automated tool moves us further away from that founding vision.For people with severe disability — persons who cannot advocate powerfully on their own behalf; those unable navigate appeals without support—their lives are at risk due not being efficient but rather dangerous measures.The Impact on Families and Carers I want this Committee to understand inadequate funding does more than participants it affects families too.When support is cut,families do absorb shortfall.Reducing hours paid work forgone healthcare rest our lives because alternative watching someone we love go without The stress pressure current proposed changes place immense many already breaking prospect further cuts delivered speed minimal genuine consultation adequate clinical safeguards causing significant anxiety distress community fear futures children.I say some severely disabled harmed die legislation passes fundamental amendment statement made full awareness inadequately supported when has complex lifethreatening care needs unmet What I Am Asking For Respectively ask the Committee recommend:

• That any new assessment tools, budgets required law incorporate mandatory review by qualified health professionals expertise relevant disabilities for all highcomplexity supports before making budget determinations. That 50% reduction participationcommunity supports proceed independent wholeofgovernment modelling downstream costs system mental services hospitals unpaid family carers.

• Explicit enforceable clinical safeguard embedded legislation protects participants life-threatening rapidly deteriorating conditions from algorithmically-generated budget reductions do reflect actual medical need.
• Senate pass Bill current form genuine extended consultation compressed two-week submission window undertaken people disability families significant changes scheme legislated
• Voices lived experience family carers formally included design review new framework planning system supporting needs assessment tool budget method implementation I support financially sustainable NDIS understood scheme must govern survival serves future generations but sustainability achieve expense people it served built protection Reform done carelessly quickly inadequate clinical safeguards not reform Harm My son other Australians permanent severe disability deserves seen persons real complex needs -number Budget Method Asking Committee ensure gets respectfully submitted, Parent