Submission: Senate Community Affairs Legislation Committee

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

Submitted By:

Parent, full-time carer of two children with Autism Spectrum Disorder Level3andLevel2.

Introduction

Iamthesinglemotherandprimarycareroftwochildrenaged15anda13whohaveLevel3andLevel2AutismSpectrumDisorderrespectively.Iescapeddomesticviolencecurrentlyprovide100%careformychildren.Imalsoaseniorregisterednursebutduetocarcaringresponsibilitiesiamonlyabletoworkthreedaysperfortnight.

IopposesignificantaspectsofthenationaldisabilityinsuranceSchemeAmendment(SecuringtheNDISforFutureGenerations)Billbecausebelieveproposedreformswillsubstantiallyharmchildrenwithcomplexdevelopmentaldisabilitiesandtheirfamilies.MylivedexperiencebeforeafterintroductionoftheNDSIdemonstrates:

• Thefailureofmainstreamservicestomeet theneedsdisabledchildren; Theimportanceearly interventionongoingtherapy;Thedangersoftoolyconductedfunctionalassessments;Thesharmcausedwhensupportsareremoved,andThenecessityindependentreviewmechanismshold NDIA accountable. I am particularly concerned about provisions within the Bill relating to: - Increased reliance on automated functional impairment assessments, Requirements exhaust treatment options Restrictions funded supports Reductionstherapycommunity participation funding.

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

Submission 1999

• increased Ministerial powers;
• limitations on review rights; and
• the assumption that mainstream systems can replace disability-specific supports. My family’s experiences demonstrate that these assumptions are not supported by reality.

Failures of Mainstream Services Before the NDIS

My older son began showing developmental delays at approximately 10 months of age in 2011. When I raised concerns with Child and Family Health nurses, my concerns were dismissed. He was eventually referred to a community physiotherapist in 2012, who identified low muscle tone but advised there was an approximate 18-month waiting list for therapy. The next referral came from speech pathology services because he had speech regressions when his appointment occurred around two years old due to pregnancy complications which included cholecystitis leading him being told “more animated as mother.” I also received advice:

• My child definitely wasn’t autistic,
• His delay could be attributed towards being boy or large size compared peers, or
• Use Marte Meo parenting method instead. Another waitlist for speech pathologists existed where private health insurance placed me bottom priority despite having private coverage. This experience severely undermined confidence delaying further help-seeking until one year later after GP completed MCHAT autism screening assessment revealing failed questions out twenty indicating three failures.

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

Submission 1999

responses indicating autism risk. Shortly afterward, he was diagnosed with severe Level 3 Autism Spectrum Disorder, after I paid approximately $2,000 for a private assessment, as the waiting list through the public system was about two years. These experiences are highly relevant to the Bill’s emphasis on “foundational supports” and programs such as “Thriving Kids” and \“Inklings.“ My experience demonstrates what happens when governments rely on parenting programs and generic mainstream services instead of providing actual therapy and specialist intervention.

Concerns Regarding Proposed Early Intervention Changes

I am deeply concerned about the proposed shift toward programs such as
text|Thri ging Ki text| extbackslash r extbackslash nchildren demonstrated either no improvement in developmental skills or developmenta text| extbackslash r extbackslash nthe children themselves were not provided w text| extbackslash r extbackslash ntions that the proposed reforms effectively expect parents t text| extbackslash r extbackslash nebates do not come close to covering th text| extbackslash r extbackslash na child with Level 2 Autis text| extbackslash r extbackslash m spectrum Disorde

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

Submission 1999

• weekly occupational therapy;
• psychology;
• behaviouralsupportsandotherinterventionsformanyyears. MyyoungersonwhohasLevelASDhassrequiredongoingtherapyforapproximatelynine years. asasingleparentwhocannotworkfulltimeduetoearingresponsibilities, thereisabsolutelynowayIcouldhaveaffordeditheirtherapiesmychildren didnotwithouttheNDIS.Theproposedreformsriskcreating asystemwhereonlywealthyfamiliescanaccessadequateearlyinterventionwhile childrenfromlowerincomehouseholdsfallfurtherehinddevelopmentally.

Early Intervention Through the NDIS Changed My Son’s Life BeforethenDIS,Ispentapproximatelysto$onprivateoccupational theraphysioandspeechpathologydespitehavingprivhealthinsuranceand Medicarerebates.Aftertheproductofthescheme,myolderbecameone ofthestartupparticipantsinSchemecommencedintensive early interventietherapy.Withinthree months,hbegannrequestfooddrinksverballyforthefirst time. Thetherapyallowedhimto:

gaincommunicationskills; 	improveadaptivefunctioning; attendmainstreamschool andparticipateineducationwithbehavioural supports.WithouttheNDSIsoultucomewouldnothaveoccurred.TherBill’s focus on reducing therapy support ignores fact that early intervention can significantly improve longterm outcomes reduce future

Submission 1999

support needs. Synergies Economic Consulting modelling shows the significant savings the government can make by providing Early Intervention to Autistic children.

            Original     Adjusted
          Average      Average  Number    Original Total   Adjusted Total

ASD Benefit per Benefit per of Economic Benefit Economic Benefit Level Child (2013 Child (2026 Children (2013 AUD) (2026 AUD) AUD) AUD) Level 3 ASD $1,296,929 $1,799,411 237 $307,500,000 $426,637,680 (Group 1) Level 2 ASD $1,202,474 $1,668,360 711 $855,200,000 $1,186,538,354 (Group 2) Level 1 ASD $747,175 $1,036,660 237 $177,100,000 $245,715,555 (Group 3) Total — — 1,185 $1,339,800,000 $1,858,891,589

Currently 20,000-40,000 children are diagnosed with Autism in Australia per year.

NDIA Administrative Failures

When my younger son began showing developmental delays, we submitted reports from a psychologist and speech pathologist confirming he required ongoing therapy.

However:

his application was “misplaced” by the early childhood access partner;

the NDIA rejected the new application because the assessor had not read the reports; and

I had to request a review of a reviewable decision.

After obtaining a formal Level 2 Autism diagnosis, I submitted another application.

Submission 1999

Despite repeated calls and emails over six months, no action occurred until I lodged a complaint with the Commonwealth Ombudsman. The process took more than a year and again cost me approximately $10,000 in private therapy expenses. This experience raises serious concerns regarding provisions in the Bill that expand NDIA discretionary powers while weakening meaningful independent review mechanisms.

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

Submission 1999

Although I lodged a formal complaint, no action was taken because the NDIA claimed the matter had been “resolved” by the Tribunal outcome. This demonstrates why independent merits review is essential. I am deeply concerned that the Bill will weaken the ability of the Administrative Review Tribunal to properly scrutinise NDIA decisions, while simultaneously increasing the Minister’s powers and reliance on standardised or automated assessments.

Concerns About “Treatment Exhaustion” Requirements The Bill appears to create contradictory access requirements whereby participants must:

• demonstrate significant functional impairment; while also
• exhausting available treatment options first. This approach is deeply problematic.To access treatment, persons normally require a diagnosis and funding first.Many treatments for disorders which cause disabilities are either:•unavailable in Australia;•unaffordable;or•unsupported by the public system.It may also pressure people into pursuing risky medical interventions inorderto remain eligiblefor disability supports.My older son has experienced cyclical developmental regressions since infancyincluding:•agitation;•insomnia;•incontinence;speech-and-language regression; anda cognitive decline.

National Disability Insurance Scheme Amendment Submission

After positive behaviour support funding was removed by the NDIA during primary school, his mental health deteriorated significantly, and he eventually experienced psychosis in Year 7. Despite clear warning signs, CAMHS discharged him after only two appointments. No blood tests or imaging were performed.A prescribing error later resulted in my son almost receiving double the maximum recommended dose of aripiprazole because handwriting on the prescription was misread by the pharmacist.My son could have died.The medication is also not available on the PBS for children who are unable officially diagnosed at this age meaning once correct dosage prescribed dispensed I paid about$100per script.Eventuallyafter extensive specialist involvementandmy own scientific literature reviewI treatedwith folinic acid suspected cerebral folic deficiency associatedfolic receptor antibodiesThe improvement has been remarkable.His speech cognition communication social skills motor skills dramatically improvedHowever:•the relevant antibody testing unavailable Australia;•treatment costs approximately300privately Theonly way to currently testfor cerebrospinal fluid would be stop treatment months risking regression subject painful lumbar puncture spinal tap Folate receptorantibodytesting requiresbloodtest which can done during treatment withfolinicacidWhen contacted Minister office requestingPBS listingof folinic acid folate receptor antbody access informed it up private companies pursue both This directly contradicts expectation within Bill families must exhaust treatments before qualifying disability supports Families cannot exhaustion governments refuse fund makeavailable am paying over $2500childrens medications per year even pension card

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

Submission 1999

Whilst my older son has had some genetic tests through the public system, which found a genetic change of unknown significance, I would have to pay housands of dollars for whole genome testing, to determine if my son has agenetic predisposition to neurodevelopmental disorders.

Proposed Therapy and Community Funding Reductions Will Cause Harm I am deeply concerned about proposals to significantly reduce therapyandcommunity participation funding.My children cannot meaningfully participatein mainstream activities withoutsubstantial support.Examples include: - Scouts requiring 1:1 support; - inability to tolerate dance classes due to sensory overload; - inability to participate safely in group swimming lessons.Theonly successfulsocial participaion opportunities availableto them arespecialist disability programs runby allied health professionals ortherapyassistants.Currently:-myoldersonattendsacookinggroup; anda-myyounger son attendsasupported gaming group.Theseare effectively their onlonyoungersocialise outside school.Myolder sonhas never formed friendships.my younger son has only onefriend.Removalof communityparticipationfunding will result ineextremesocialisolation.TThe NDIA hass repeatedly argued that “mainstream services” could replacefundedsupports.I challenged those assertions atthe Tribunalon threeseparate occasions,andtheadency was unable toidentify asingle viablealternativeservice.

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

Submission 1999

There are no mainstream alternatives capable of replacing:

• hydrotherapy;
• speech pathology;
• occupational therapy; or
• specialist social participation programs.

Lack of Carer Supports As a sole parent caring for two children with significant disabilities, I am already under severe financial and physical strain.The NDIA has refused respite supports, claiming I could “get a babysitter.”This demonstrates a profound lack of understanding regarding disability care.Babysitters do not care for large adolescent boys with moderate to severe

disabilities, behavioural needs, communication impairments and mental health complexities.My children are unable to attend Outside School Hours Care because they are considered“too big”and require support beyond what OSHC can provide.The Bill also appears to assume that parents of children with disabilities should absorb even greater caring responsibilities,far beyond what would reasonably be expected of parents of typically developing children.My older son is 15 years old,yet due to his disabilityI still need to: - supervise him constantlyforhis safety;- assisthimwith showering;- prompt andaidsitheto brushhisteeth;- monitorhisemotional regulation;anda-manage hisdaily living tasks.This levelofcare isnot comparableto ordinary parentingresponsibilities fora teenager.Parents oftchnildren witsignificantdisabilitieaereffectively providing:

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

Submission 1999

• unpaid disability support work;
• behavioural support;
• nursing care;
• advocacy;
• case management; and
• crisis intervention around the clock. The expectation that families can simply absorb more responsibilities while formal supports are reduced is unrealistic and unsustainable. it places carers at significant risk of:
  • burnout;
  • financial hardship;
  • physical injury; and
  • mental health deterioration. The bill assumes schools and mainstream systems will absorb these responsibilities despite:
  • significant cuts in school funding, and
  • no evidence major investment allied health staffing or infrastructure. It has taken five years and involvement a Disability Advocate finally get my children’s school provide they need They both had multiple suspensions last year what considered “aggressive” unsafe behaviour faced being expelled occurred fact individual learning plans not followed poorly trained staff escalating their behavior calling them defiant telling older son giving headache whenever would upset start crying, called him gross when exhibited disinhibited behaviors such as nose-picking The only strategy was remove from classroom made even more upset contact me take home These issues many with neurodevelopmental disabilities – parents currently face

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

Submission 1999

The education system will somehow support the approximately 160 thousand children who will be removed from this scheme is completely unrealistic.

Concerns Regarding Ministerial Powers and Independent Review

I am extremely concerned about provisions which expand ministerial power while limiting independent review. The Administrative Appeals Tribunal now known as the Administrative Review Tribunal has been my family’s experience with holding accountable the NDIA through its intervention:

• Without such tribunal intervention: ✘ My children would have lost essential supports; ✘ Therapy would not continue; And, ✘ Their developmental outcomes could deteriorate significantly.The proposed reforms risk replacing meaningful independent scrutiny with automated reassessments controlled discretionally by both ministers and themselves.NDIs This creates substantial risks vulnerable participants undermining procedural fairness.

Recommendations I urge Committee recommend that bill amended preserve full merits independent powers administrative review tribunals prevent arbitrary or blanket therapy funding reductions, Preventing community participation funding reduction ensure functional assessments transparent evidence-based conducted appropriately qualified clinicians require participant copies all assessment used decision-making.

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

Submission 1999

• Prevent the NDIA from relying on unsupported assumptions regarding “mainstream supports.”
  • Ensure treatment exhaustion requirements apply where treatments:
    • clinically appropriate;
    • evidence-based;
    • publicly accessible;and
    • affordable. Increase investment in actual mainstream disability services before removing NDIS supports. Expand respite and carer support for sole parents and high-needs families. Ensure children with complex autism continue to access intensive therapy specialist social participation supports.

Conclusion My children’s lives improved because of the NDIS Before the Scheme we experienced delayed diagnosis dismissal by professionals long waiting lists unaffordable therapy costs harmful assumptions about parenting .

The proposed reforms risk returning families exactly that system.The NDIS not failing because like mine receive therapy behavioural supports community participation supports major cost pressures within scheme more appropriately linked provider fraud administrative inefficiencies outsourcing private contractors adversarial decision-making processes itself.In my family’s experience,NDIA staff repeatedly made decisions reduce funding without properly reading allied health reports or recommendations treating those then force vulnerable participants lengthy legal appeals through Administrative Review Tribunal government subsequently spends enormous amounts

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

Submission 1999

public money fighting disabled participants and their families, including tens of millions of dollars annually on external legal costs, rather than properly assessing participants’ needs in the first place. Instead of targeting children with disabilities and reducing essential therapies and supports, reforms should focus on improving administrative accountability, reducing wasteful legal disputes, addressing fraud, ensuring decision-makers are appropriately qualified, and investing in genuine evidence- based supports. I urge the Committee to carefully consider the real-world consequences these reforms will have on children with significant disabilities and the families who care for them.