National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
Introduction:
As someone deeply concerned regarding our nation’s future under proposed changes to the NDIS affecting individuals living with disabilities—under both budgetary constraints and within The National Disability Insurance Scheme Amendment Act: Securing the NDIS for Future Generations), it appears these modifications aim at portraying disabled persons negatively while suggesting they impose undue burdens on societal resources. The NDIS was designed specifically so those enduring permanent impairments could lead dignified lives, yet current proposals seem geared towards diminishing essential supports provided especially crucially needed by complex cases of fluctuating developmental needs or less visibly apparent conditions. I am particularly worried about autistic adults alongwith women/girls, children suffering from developmentally related issues; as well participants whose requirements do not neatly align into rigid frameworks or labeled ‘high functioning’.
Personal Context:
Expressing such concerns stems directly out my own lifelong experience in disability community witnessing firsthand how lack thereof can severely impact people’s quality-of-life. My brother Brendan is Autistic Level-3 intellectually impaired non-verbal; he also suffers epilepsy bipolar disorder OCD. At age eight nine when I myself turned two years old, his parents placed him inside Baringa institution located Wollongong due support deemed too extensive for home care. This decision came after much deliberation influenced heavily by prevailing attitudes toward disability back then. Poor safety environment made it impossible to provide adequate assistance required at that time.
He attended Corrimal school until eighteen one longest attendee thereon transitioning later into SIL where constant budget cuts and changes threatened further reduction his already limited services. Living arrangements changed frequently between group homes with varying numbers staff members full-time pool access eventually becoming unaffordable leading move elsewhere again. The government often prefers placing individuals like Brendan within larger groups despite needing more direct supervision which compromises their independence. Brendan was NDIS participant while alive owing ABI physical disabilities resulting injuries sustained during suicide attempt 2016 father passed away same year from those very wounds; serving as plan nominee since unable advocate himself, ensuring no funding or supports cut under dedicated coordinator’s guidance. I work inclusion teacher mainstream high schools daily assisting young adults requiring education community integration basic human right seen financial strain burden society others demonize exclude differences stimulatory behaviors dysregulation are
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
misinterpreted as bad behaviour or unsafe. They experience bullying or negative comments or social exclusion on a regular basis. Some of them have begun to deny supports they need as they believe this makes them more of a target with their peers and they desperately want to be “normal” and fit in. I have seen students try to access mainstream services like community mental health services and have their applications rejected due to an overwhelming number of people needing supports. I have seen people on extensive wait lists for services they desperately need, annd parents stressed as they cannot financially handle the costs of self-funding services or diagnostic processes to gain access to supports.“In every classroom we have students who are not diagnosedandarenot receiving external supportsdue tobarrierstoaccessibilityanda ndaffordability.Ihave satwithparentsastheybroke downdue tot he stressoftryingt okeeptheir disabled child aliveastheyhavesignificantmentalhealthchallengesandan dhave wantedtot endtheirownlife because they feel broken anda nndefective.This is partiallybecauseo f how society framesdisabledpeople,an dan dbeliefsattitudes,and ableismthatformalargepartofsocietaleviews.Differenceisseenasad,bad,w eird oran ddwrong.Manyour systemsarabrokenana rnsot upforpeop lewho deviatefromthenorm.”
More personally,I havetwo daughterswhobothaccesstheNDISunderthearlychildhoodapproach.My eldest daughter Eleanor whois7,isAutistic(level2),ADHD,mildy intellectuallydisabled,hass a moderate speech language disorder and mildspeech sound articulation disor der.We ar also currently exploring additional challenges suchasa possibleDevelopment alCoordinationDisorder,DyslexiaDysgraph ia an Dycalc ulia.She hasa chromosomal microduplication. She attendsamainstreamstateschoolbut I h aveto constantly fight for ana dvocate fors u pports.S ha s NDIS but we have zero funding fora support worker or any assistive technology. Due to the current diagnostic processand biases withintheaduim assessents antreating professionals she hadto complete two separate ADOS assessments due tobias towards externalised presentations of autism.Shais seen by many as “lowsupport needs”person Sh is aperson who couldhave her supports cut under proposed changes.“My youngest daught er Clara,whoi si4,curre ntyonlyhas adiagnosisof achromosomalmicroduplic ation anda ndglobal developmental delay .Sheh asmajordelaysinmultipleareasan dattendsaneCDP programanda ndkindya withlimited inclusion suppor t available.She likely sharesmanydiagnoseso fmyotherdaughter bu stheyounger sowe haveno commencedformal assessmentandi gnosisproceedingsalthoughthis will be requiredbythe time sheturns6years old SHEisalsoveryat riskunderprop osedchanges.I also livewith a disability.I was diagnosedwi thAutism(level2) and ADHD ata ge o 33after years of having myneeds diminished an ignored.AsIwasnotasobviously disabledasa mbrothermyparentswere largely unawareofm ydifficulties Iwass high maskinghigh achievinga ndintelligentbutabit sensitive. Ialsohave multipleco-occurringchronic health conditionsincludingsevere obstructivesleepapnoeaandsuspected hEDS,POTS,andMCAS (official diagnosis of this i s inaccessibleand expensive). Just got m y first NDIS plan, anndImust say it w as disappointing ast idoes not reflect my current level off or support but Imastold to get more funding Ineedto provide mor e evidenceoff mys upport needs which meansmoreaburdenon me, top roveiamdisabledan dneedssuppo rt. I am significantly burnt out,tired ,antryingtoremainafuncti oning membero fsocietywhocontributesanda n dacarer anda nprenttom yt wo children,b utwithout the supports IAMrequestingIAMcannot dothis.Dose that no tcreatealargerbur den? IfICannot longer workdue toburnoutor take careoftmychildrendoesthatnotin placemor burden ons ociet? IW o rk,I paytaxesIAmsasking fors u pports tolive mi life with safety,supportsustainability and dignity,but IAambeing toldth isis”not reasonable “ anhdhardtot justify.“When I wasyounger Ihad significant mentalhealth challenges.Iwasdepressed,a nxiousande ngagedin Non-SuicidalSelfInjurybecauseofthelevelodistressa ndbrokenness Ifeltatjusttrying toe x ist.Ididno tknowwhyIalwaysfeltso differentIFe lkt likeana lienfromanotherplanetort hatthere w as something fundamentallywrongwithme. IW astoldImas too sensitive toomuchtha nnedto calm downtry harderanddo better . I always have felttoo muchandan dd not enough atthesame time.T urnsa ount ImauDHD
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
and trying to live in a neurotypical world not designed for my needs. I am slowly working on trying to understand and accept myself and unlearn all of the lies I believed about who I am as a person, but to do that, I need supports. I need access to an OT and a psychologist.Ialso neeaccessoother allied health possiblya workerto manage my other chronichealthneedsresponsibilitiesbut don’t hav enough “ evidence” so either self-fund which probably thousands dollars yearthat do norhave or“live withit”acceptmy new normal”. That doesn’t sound very fun does it? Concerns AbouttheBill: My biggest concerns proposed changes this bill talk cutting up people offNDIS impact going have those people disability community largest minority group anyone can join at any point life did choose disabled Many us born disabilities last checked consent beingborn had children before knew wasdisabledchildren now also hasdisabilities It is also concerning removing mental health services such psychology deemed medical expense should under Medicare told go GP get mental healthcare plan years; covers support needs at all over years cuts pay $out pocket every session psychologists expensive out there Myneedpsychology directly linked disabilitymedical issues will continue regular ongoing psychological support apparently reasonable ask support pay Impact Autistic People / Children Women: it is veryconcerning hearing Honourable Mark Butler MP Minister Disability National Disability Insurance Scheme talking outdated functioning labels highfunctioningslightlyautistics describe vulnerable population his proposed changes threatening impact Trust feel mildyhigh functioningt these antiquated terms hurtful harmful ourcommunity government official elected represent these people hope know better use language shows society whole views disabled particularly autistic people come somewhere they exist vacuum Cutting supports funding to these people place larger burden education, medical and mental health services believe could result higher rates suicide some of the vulnerable disabled community already three times more likely die by suicide. ForAutistic individuals even 710times more take ownlife There lot say aboutimpactthisgoinghave on highmaskingeatingparticularly girls women gender diverse people internalised presentation autism person able mask still need support but are cut We mask survive make others comfortable detriment easier do this than judged invalidated misunderstood learn from incredibly young age
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
because we learn that that is what society wants. We tolerate distress and discomfort because that is what we are taught is normal, expected, and wanted by society, and we gaslight ourselves into thinking we are the one’s problem when it actually systems in need make changes. We perfectionistic high-performing ones afraid draw too attention to ourselves Just because can do comfort until mental breakdown burnout. disabled also carers children disabilities don’t me started Australia relies approximately million unpaid providing essential support would otherwise cost tens billions dollars annually struggle any support there payment/allowance if you mountain paperwork but not enough What do if can’t get or kids already struggling as it is Concern About Functional Capacity Assessments Administrative Burden Evidence Requirements: When got my plan expressed concerns lack funding supports given access told needed undergo functional capacity assessment current climate government talking cuts “high-functioning” people frightening start wonder significant effort getting to prove need giving evidence they cut off reduce further zero recognition amount time energy completing assessments disabled person have sit someone say negative things yourself identify every single deficit how much struggle just basic level of This focus negatives personal wellbeing health For a person already trying take care themselves family asking more desperately big ask It takes lot apply NDIS hoops jump through piles paperwork hours assessments meetings just life tolerable Families often spend dozens cases hundreds preparing for reviews reassessments I understand needs processes evidence cannot hand out money anyone system designed supported disability accessibility issues knowledge support many people do know capacity believe currently supported knowledge capacity receive even insufficient accept though desperate need nothing at all nuance taking advantage providers coordinators taking advantage disability own gain Disabled want live lives normality dignity able other people second thought Most are going into applying financial gain little bit try get safely sustainably with dignity
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
Foundational Supports Concerns:
Earlier this year Mark Butler announced a system of community supports to transition people to that do not exist. The supports for Thriving Kids do not yet exist, Community-based supports have been gutted and removed; it’s expected these will return within short time without consultation local disability groups or state governments taking on burden. Many left unsupported as they simply don’t exist; others unable take load expect them instead when my LAC couldn’t name any additional supports available out-of-pocket costs. NDIS application approved she could give single name access services minister proposing move off NDIS into these services… What where? Can you show me find them?# System Design Broader Impacts: Many concerns raised result individual misuse rather than design itself, which was based assumptions did fully account actual size complexity lifelong nature in our community because what we are seeing feels less genuine reform attempts restrict access response pressures always existed supporting permanent disabilities is also important say clearly reduced support need disappears elsewhere lands families already exhausted teachers trying overcrowded classrooms stretched health mental systems carers quietly holding everything together From lived experience quickly things fall crisis even slightly reduced Students with disability now make up approximately school enrolments placing increasing demand inclusive education systems framed savings often just becomes invisible unpaid labour stress breakdown other parts the system example significant proportion Australians still receive adequate ongoing treatment existing Medicare pathways funding insufficient MHCP there barriers accessibility There very real human impact decisions made As complex evidence increases people struggling most least able fight stay it those burnt overwhelmed under-supported strong advocacy around risk falling through cracks not fair system rewards capacity navigate bureaucracy level of need do believe disabled asking anything unreasonable Most us try hold lives stable function world difficult to navigate Asystem requires repeatedly prove own disability living significant barriers administratively difficult emotionally physically draining actively worsens peoples’ health If sustainability goal cannot come cost pushing people crises expecting others absorb consequences True sustainability include honesty about pressure actually coming recognition removing does remove need only changes where that shows up can completely understand some governments concern costs NDIS know expensive but this due disabled They built a system severely underestimated how large population providers regulate pricing and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
police fraud. However, the solution is not to punish disabled people who genuinely need these supports by taking them away. There are no alternatives; do not leave these people in the lurch.
Recommendations:
The following recommendations are offered to ensure that NDIS reforms remain fair, evidence-based, and responsive to the lived realities of disabled people and their families. Future NDIS reforms, operational guidelines, and assessment processes should be genuinely co-designed with disabled people, including autistic adults, people with intellectual disability, women, carers, and those with complex or fluctuating support needs. The experiences of people most directly affected by these reforms must be meaningfully included in both policy development and implementation. The government should ensure that autistic people and children are not excluded from necessary supports through overly narrow interpretations of functional impairment or developmental expectations. Autism and many other disabilities can involve fluctuating needs, masking, cumulative burnout, and significant invisible impacts that may not be immediately apparent in brief assessments or rigid functional frameworks. Reforms must acknowledge these realities, particularly for autistic women and girls, who often face delayed diagnosis, diagnostic inequities, higher rates of masking, and significant mental health impacts associated with unsupported disability and chronic burnout. The NDIA should reduce the ongoing administrative and evidentiary burden placed on participants and families, particularly where disabilities are lifelong and well-established. Families are currently required to spend substantial time and financial resources sourcing updated reports, repeatedly proving permanence, navigating appeals, and coordinating fragmented systems. Existing evidence should be accepted for longer periods where appropriate, and unnecessary reassessments should be minimised to reduce preventable stress and instability for participants and carers. Any functional assessment processes introduced through these reforms should be transparent, evidence-based, trauma-informed, and subject to strong independent oversight and appeal protections. Assessors should have disability-specific expertise, including autism-informed practice where relevant, and the evidence provided by treating professionals who understand the participant over time should carry significant weight within decision-making processes. Foundational supports must be fully designed, adequately funded, and operational before any reduction in NDIS access or individualised supports occurs. These supports should complement, rather than replace, individualised disability funding for people with significant functional impairment. Without appropriate safeguards, there is a substantial risk that disabled people and families will fall through gaps in support and experience worsening outcomes. Finally, efforts to improve the sustainability of the NDIS must not result in reduced quality of life, increased crisis presentations, family breakdown, educational exclusion, or unmet support needs. Sustainability should not be achieved through increasing barriers to support for disabled people, but through building a system that is accessible, preventative, responsive, and grounded in dignity and human rights.
Conclusion:
I know this submission is long. In the past I would have apologised for my lack of succinctness, but I will not apologise for trying to make my voice and the voice of others who may not have the capacity or ability to make such a long, eloquent submission for themselves heard. I hope that people, or at least someone, takes the time to read this and other submissions in their entirety and is moved to stand with us to try
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 17
fight these harmful changes. I am a strong believer in the saying “Nothing about us, without us”. The government is trying to save money and make changes without consulting or listening to the people these changes are impacting. This is unacceptable as it goes against what Australians and, actually, all decent humans on Earth stand for. It is removing people’s rights to safety, both physically and psychologically, and will have a negative impact on a wide number of people who are already vulnerable members of society. it is removing people’s dignity and also operating on the assumption that having a disability means you should not be able to do things that non-disabled, neurotypical people can do because it costs society money to support you to be able to do these things. They would have us sitting at home, isolated and unsupported in the name of saving some taxpayer dollars to spend on other areas which I acknowledge are also important but there needs to be some balance. They could recoup some of these costs in other ways but they won’t do that; instead, they are going after the country’s most vulnerable So much work has gone into advocacy and changing the conversation within the disability and neurodivergent communities—look how far we have come; let’s not go backwards into darker times in the name of saving some money Please do not place already vulnerable people at further risk of having their quality of life diminished Many of us are very tired-tired of having to explain ourselves and justify our own existence and fight for basic rights or opportunities that other people have access to or don’t need due to lack of barriers Tired of shrinking ourselves down to fit into peoples boxes to make them more comfortable and jumping through hoops to get basic support. i am not alone in my feelings:there many who feel same way so please dont’ make changes that impact without thinking about cost involved Its more than just money, it’s lives stake.