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

Submission 2132

Submission to the Senate Community Affairs Committee Inquiry

Executive Summary

I am writing as the parent and primary carer of a 16-year-old young person with Autism, ADHD, Intellectual Disability, severe anxiety, and Avoidant Restrictive Food Intake Disorder (ARFID).

I have chosen to make this submission anonymously. This submission is not simply about my son or our family. It is about what happens when a system designed to support people with disability fails to provide adequate support during one of the most critical periods of a person’s life: the transition from childhood to adulthood.My son is exactly the type of participant the NDIS should be investing in.He is a young person with significant disability-related functional impairment who requires support to remain engaged in education, develop independence, access his community, build social connections, prepare for employment and transition into adulthood.Instead, despite extensive evidence of substantial disability and functional impairment, he receives only three hours of support work per week.This submission outlines:● The extent of my son’s functional impairment.●The inadequacy of his current NDIS supports.●The growing gap between school and adulthood for young people with disability.●The transfer of responsibility from the NDIS onto unpaid family carers.●The absence of meaningful informal supports.●The fear many families experience when interacting with the NDIS.●Concerns regarding the proposed legislative reforms.●The long-term social and economic consequences of underfunding young people with disability during adolescence.●The human rights implications of these policy decisions.My central concern is simple:The NDIS increasingly speaks about independence, capacity building, participation and employment while simultaneously reducing or limiting the very supports required to achieve those outcomes. This is not only poor policy.It is economically short-sighted, socially harmful and inconsistent with the stated objectivesof the NDIS.About My SonMy son is 16 years old.

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

Submission 2132

He lives with Autism, ADHD, Intellectual Disability, severe anxiety and ARFID.

He is a bright, funny, caring young person with dreams, aspirations and goals for his future.

Like many young people his age, he wants to become more independent, participate in the community, develop friendships, work, learn to drive and do all of the things that other kids his age are doing.

He wants to build a life that reflects his interests and strengths. The difference is that achieving these goals requires support. For many young people, these developmental milestones occur naturally through education, social experiences, family support networks and increasing independence. For young people with significant disability, additional supports are often required to bridge the gap between childhood and adulthood. This is precisely what the NDIS was designed to do. However, our experience has been that the system increasingly focuses on limiting support rather than enabling outcomes. The result is that young people with disability are expected to achieve the same goals as their peers without being provided with the supports required to get there.

Evidence of Significant Functional Impairment

My son’s support needs are not based on opinion. They are supported by professional evidence.A recent Functional Capacity Assessment identified severe impairment across multiple domains of functioning.The assessment found severe difficulties with cognition, including learning, memory, attention, executive functioning, planning, organisation and problem-solving.His cognition score on the WHODAS assessment fell within the severe range, reflecting substantial barriers to everyday functioning and independence.The assessment also identified substantial difficulties with communication, social participation and adaptive functioning.Communication skills were found to be significantly below age expectations, with functioning below the first percentile in several areas.Executive functioning deficits affect his ability to:

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

Submission 2132

• Organise tasks.
• Manage time.
• Sequence activities.
• Plan ahead.
• Problem solve.
• Complete daily activities independently.
• Initiate tasks without support. The assessment found severe difficulties in planning and organisational skills and identified a heavy reliance on adult prompting and scaffolding for everyday tasks.Safety awareness was also identified as a significant concern.The assessment documented challenges relating to: Road safety. Risk awareness. Community safety. vulnerability to exploitation. situational awareness. independent decision making.These difficulties mean that community participation often requires supervision and support.The report further documents substantial emotional regulation challenges, anxiety, sensory processing difficulties and barriers to social participation.Importantly, the assessment identifies significant reliance on family support across all domains of life.This is not a young person who requires occasional assistance.This is a young person with complex and substantial support needs.Yet despite this evidence, the supports currently funded fall far short of what would reasonably be expected for someone with this level of impairment.

The Education CrisisOne of the most concerning aspects of my son’s situation is his increasing disengagement from education. He is currently unable to attend school due to the impact of his disabilities.The Functional Capacity Assessment documents significant difficulties with school attendance arising from anxiety, sensory sensitivities and emotional distress. It notes that school participation has become increasingly difficult and that these barriers have a substantial impact on his ability to engage in education.This should be viewed as a significant warning sign.

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

Submission 2132

Education is one of the strongest predictors of future employment, social inclusion, independence and wellbeing. When a young person with disability begins disengaging from education, the response should be increased support, not reduced investment. Instead, many families are left attempting to hold together fragile educational participation without the supports required to address the underlying causes of disengagement. The longer these issues remain unaddressed, the greater the risk of lifelong consequences. The Inadequacy of the Current Plan Despite extensive evidence of significant functional impairment, my son’s current plan does not provide the level of support required to address his needs or achieve the goals identified within the plan itself.The reality is that the supports funded are not aligned with the evidence. The Functional Capacity Assessment identifies severe cognitive impairment, significant executive functioning difficulties, impaired safety awareness, substantial barriers to community participation, communication challenges, emotional regulation difficulties and ongoing reliance on family support.Yet these needs are not reflected in the practical supports available to him.My son currently receives only three hours of support work per week.Three hours per week may be appropriate for a participant requiring occasional assistance.It is not adequate for a 16-year-old with Autism, ADHD, Intellectual Disability, severe anxiety and ARFID who is struggling to access education and requires support to develop independence.The NDIS plan identifies goals relating to:‣ Independence‣ Community participation‣ Social connection‣ Confidence‣ Emotional regulation‣ Employment preparation‣ Learning to drive‣ Participation outside formal education.However, there is a fundamental disconnect between these goals and the supports funded toachieve them. The plan effectively sets expectations without providing the resources required to meetthemThe result is that responsibility is transferred back onto family members who are expected tousomewhere bridge the gap between aspiration and reality.This is not genuine capacity building; it is the appearance of capacity building.

National Disability Insurance Scheme Amendment Bill

Submission 2132

The NDIS frequently speaks about participant outcomes; yet outcomes cannot be achieved without investment.

The current plan does not provide sufficient resources for realistic achievement of identified goals in terms of outcomes:

The Missing Bridge Between School and Adulthood

My child turned sixteen years old recently, in which they’re at an important stage where preparation must begin toward adult life; it represents one priority period within our system that requires substantial financial commitment via NDIS funding. The reality now shows it as being increasingly neglected among other gaps present throughout society today: specifically regarding individuals living under disability who do not naturally possess all necessary skills upon turning eighteen readying themselves towards employment opportunities, independent lifestyles, community engagement activities nor further educational pursuits— as such abilities develop over time rather than overnight. This critical phase between approximately fourteen to十八years is when foundational building blocks need strengthening before transitioning into adulthood. During this timeframe, support should ideally include development across several key areas including but not limited solely too:

• Developing independence
• Building executive functioning capabilities
• Gaining access through communities
• Increasing social participation levels
• Enhancing transport proficiency
• Exploring vocational interests
• Acquiring work experience
• Boosting self-confidence
• Learning advocacy techniques
• Cultivating emotional regulation strategies
• Pursuing learner’s permits eventually leading up until obtaining a driver’s license. However there appears significant disparity currently existing amongst school-based supports versus those provided by the School Leaver Employment Supports (SLES). Families are often left with little assistance navigating these transitions, making many young people fall behind in their education and personal growth due largely because of inadequate resources or guidance available at hand during crucial developmental stages; in turn leaving them unprepared for life beyond schooling without adequate preparation beforehand.

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

Submission 2132

By then, valuable years have been lost. The consequences of this failure are predictable. Young people become socially isolated, employment opportunities diminish, confidence decreases, mental health deteriorates, reliance on family increases.

Future support needs become more intensive and more expensive. This is not only harmful for individuals, it is economically irrational.

Every skill developed during adolescence has the potential to reduce future support needs. every opportunity lost increases future costs. The NDIS should be investing heavily in transition supports for young people with significant disability. Instead, many families are finding themselves fighting simply to access enough support to keep their children engaged and connected.

The Hidden Workforce Propping Up the NDIS

Much of the public discussion about NDIS sustainability focuses on participant funding, far less attention is given to the unpaid workforce quietly keeping the system afloat: family carers. In our family, I am not just a parent.Iam an advocate,casemanager,support coordinator ,transport provider,education liaisonadministrator emotional support person crisis response teamand oftentheperson responsible forefillingthecountless gaps left byan underfundedsystem.This workisunpaid,largely invisible anda increasing assumed .What concerns me isthat whensupportsare reduced,the need doesnot disappear.Somone stillhas toprovidethesupervision transport advocacy emotionalsupportskill buildingandeday-to-day care.Moreoften thannotin thatresponsibility falls back onto familie s.Inourcase thereison extendedfamily waitinginthewingsto help.Therejustus.Every gap insupport becomes another responsibilitythatfallsbackonto ou r household.Over time thathass real consequences.Parents reducework hoursor leave therwork force altogether.Career sare puton hold.Finan cial pressure increases.Car ersbecome exhausted.Family relationships comeunder strain.What istont omiss from discussionsaboutNDIS sustainabil ityisan honest conversation ab out where thesecostsgo whensupp orti sreduced.The ne d itselfdoes n otdisappear.Families absorb as much asthey can untiltheyreach breakingpoint,and then theconsequences startshow ing upelsewhere.They show instruggling education systems.overwhelmed mental health services,increased reliance on income sup port,housing instability,crisis service sand ,for someyoung people,inte ractions withthe justice system.Fromwh ere I sit,thisdoest notlook like sustainability.Itlookslike cost shifting.T he problem isnotsolved .The costsimply transferredfromthenDIS ont ofamiliesandother alreadystrainedsystems,wilyoungpeople losevaluable yearsthata couldhave been spent building skills.confidence and independence.

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

Submission 2132

A truly sustainable NDIS cannot be built on the assumption that families will continue absorbing increasing levels of responsibility without consequence. Nor can it be built by repeatedly kicking the can down the road and expecting other systems to deal with the fallout later.

Fear, Power Imbalance and Loss of Trust

I have chosen to make this submission anonymously. That is not a decision I made lightly. as parent, I should be able to speak honestly about our experience of the NDIS without worrying about whether it will affect future interactions with the Agency Yet know am alone in feeling uncomfortable attaching name criticism holds significant influence over son’s future The reality relationship between participants NDIA equal one Agency controls access supports directly affecting person education independence community participation mental health opportunities When organisation level power people become cautious speaking openly things go wrong Over years spoken many parents carers disability share similar concerns Some worry labelled difficult Others viewed unreasonable non-compliant Whether those fears justified really point fact so many them concern policymakers trust telling system built when feel heard evidence genuinely considered decisions transparent challenged necessary Our experience substantial evidence does necessarily result outcome reflects actual needs Families spend years attending appointments gathering reports obtaining assessments explaining impact daily life only receive plans bear little resemblance confidence inevitably damaged Many proposed reforms appear likely increase existing imbalance power between participants agency Reduced oversight fewer accountability mechanisms greater reliance automated processes increased discretion do build trust They risk further eroding For scheme founded principles choice control that should significant concern Why Proposed Reforms Are So Concerning My concerns legislation cannot separated family’s experienceexisting

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

Submission 2132

The reforms are being proposed against a backdrop where many participants are already struggling to access adequate supports. Families like mine are already attempting to navigate planning processes that often feel adversarial. Many participants are already receiving plans that fail to reflect available evidence. Many carers are already operating beyond sustainable limits. Against this backdrop, the proposed reforms appear to increase Agency power while reducing participant protections. I am particularly concerned about:

Automated Decision-Making

What worries me about automated decision-making is that disability is rarely straightforward.My son is not just a diagnosis on paper.He is a 16-year-old young person with multiple disabilities whose ability to function changes depending on his environment, anxiety levels,sensory load, support network and the demands being placed on him.A computer may be able to process data,but it cannot sit across from a family, understand the reality of daily life, or appreciate the cumulative impact of multiple disabilities on a young person’s future.Decisions that affect a person’s education,independence,safety and participation in society deserve more than an automated assessment of information entered into a system. My son is a young person whose support needs are shaped by the interaction of Autism,ADHD[Intellectual Disability],anxiety[ARFID][executive functioning challenges],[educational disengagement]andfamily circumstances.[These complexitiescannotbeadequatelyunderstoodthroughautomatedprocesses.] The introduction of automated decision-making raises serious concerns about fairness,[transparency]accountability.Participantsdeservetoknowthat decisions affecting their lives have been madebya persongenuinely consideredtheircircumstances.

Increased Delays Whatworriesmeaboutextendingthesetimeframesisthat childhooddoesn’twait.Mysonis alreadystrugglingtostayconnectedtoschoolandoodevelopthe skillshe willneedasan adult.Ifweidentifythatheneedsmoresupport,watinganotherthree monthsforadecision isn’taminorinconvenience.That’asa whole school term gone.Thatisanotherstermwhere he’s fallingfurtherbehindhispeersindoing independence.confidence.communityparticipation employmentskills.Young peopleonlygetonechanceto beyoung.The opportunitiesmissedwhile familiesarewaitingfordecisionsarenotalwaysopportunities thatcan simplybemadeuplater.

Reduced Accountability

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

Submission 2132

Our experience has been that having evidence does not necessarily result in an appropriate outcome. We have provided reports, essessments dand professional recommendations that clearly document tne significant impact o our son’s disabilities n his daily life education independence nd future opportunites yet te supports funded still fall well short ot what he nees That experiee makes e proposed reduction i accountability and oversight particularly concerning The NDIA already holds enormous power over the lives or peopel with disabiliti It determines access to supporst hat cna directly affect person’s safety eduction employment opportunitis independen mental health and quality olife Reducing review rights extending decision-making timeframes removing safeguards ad increasing Agency discretion risks creating an unprecedented imbalance between participants andtheNDI In any system where oneparty hold such signifcant authority over Lives others strong oversit transparency independent avenues for challenge are essential These reforms appear move opposite direction If anything greater scrutiny aad accountabilty needed particularl when many families alread feel tht professonal evide is not being adequately reflected planning decisions Expanding Compliance While Reducing Support Perhaps most frustrating aspect these reoms is familes constantly be told NDIS unsustainabl funding must reduced participant need accept less Yet same legislation expands compliance powers increases administrative controls creates new monitoring enforcement mechanisms introduces automated decison making gives Agenc greater autority over participan providers From perspective of familys struggling obtain adequate support it raises obvious question if resources so limited why does appear fund available more bureaucracy more surveillance more enforement but no enough ensure 16-year-old significant disabilities receives suport he needs acces education develop independence prepare adulthood Long-Term Cost Underinvesting Young People Sometimes feel like policymakers talk about young people disability as though adultho just magically happens My son i Right now his peers learning drive getting part-time jobs catching public transport, mak plans life after school gradually becoming independen from parents None that happen by accident For yong peopel with significat disabilitie those sam milestones often require suppor practice coaching opportunities to learn Problem seem there huge gap between schol and adulthood ane family expected somehow bridge on own What concerns me this wrong consequences do disappear They simply emerge later different costly ways show up unemployment social isolation deteriorating mental health increased vulnerability potential interactions justice system ongoing reliance ageing parent higher support nees in aduult hood As a parent difficult understand how can considered sustainable Investing youg people wih disability critical transition adulthood not unnecessary expense It one most effective opportunit we have

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

Submission 2132

Human Rights, Participation and the Purpose of the NDIS

When people talk about NDIS sustainability, I often wonder whether anyone is thinking about what sustainability actually means for families like mine. My son is 16 years old. He has Autism, ADHD, Intellectual Disability, severe anxiety and ARFID.Heisstrugglingtoaccesseducationandrequiressupportacrossmultipleareasof daily life.Despite extensive professional evidence documenting significant functional impairment, hecurrentlyreceivesonlythreehoursofsupportworkperweek.I find myself askingwhatexactlytheexpectationisin. What does the system expect to happen next? Howishessupposedtobuildindependencewithoutopportunitiestopractiseit? Howisheshsupposetoprepareforemploymentifhestruggles toremainengagedineducation ? H owish es h supposedtod evelopcommunity access skills if he cannot accessthe community?H o w i s hes up posed t ol earn td rive , develop confidence,b uild social connections a nd preparefor adulthood with such limited support? These are not rhetorical questions.Theyaretherealityfamiliesaretryingtonavigateevery day .I fully understand that government resources ar enot unlimited an dthat public money must be spent responsibly.Whatistruggle tod un derstandisthelogic of reducing investment at exactly thepointwhereithasthestreatestpotentialtocahnge thetrjectoryo fayoungperson’slife.The years between adolescence anda dulthoodar ecritical. Theyaretheyearswhenyoung peopledeveloptheskills,confidenceandexperiencestha tsshape theirfuture.If youngpeople w ithdisabilityarenottgiventhesame opportunities todevelopt hose skill,s,theconsequences shouldnotcomeasa surprise.Greater dependence,poorer employment outcomes, social isolation and increasedsupport needs inadulthooda ren otinevitableoutcomesof disability. Theyarem ont thepredictableoutcomeoffailingtoprovideadequatesupportwhentitmatteredmost.From where I sit as aparentthequestionisnothewetherwe can affordtosuppor tyoun g peopl e like my son.T he question is whether wecanaffordnotin to.

Recommendations

• Reject any legislative changes that reduce accountability , independent oversight , review rights or external scrutiny o f NDIA decision-making.

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

Submission 2132

• Reject any expansion of NDIA powers that is not accompanied by equivalent safeguards, transparency measures, procedural fairness protections, and independent review mechanisms.
• Require the NDIA to provide clear written reasons where planning decisions differ significantly from the recommendations of treating professionals and existing evidence, including an explanation of how participants are expected to achieve their stated goals with the supports funded.
• Reduce the burden on participants and families to repeatedly prove disability and support needs where substantial evidence already exists. The issue for many families is not a lack of evidence but failure in planning decisions adequately reflecting this evidence.
• Establish a dedicated transition pathway for young people aged between 14–18 years old who have disabilities; recognizing adolescence critical period developing independence community participation employment readiness transport skills self advocacy life skills.
• Address significant gap school-based supports Community Participation Supports School Leaver Employment Supports SLES adulthood prevent young people falling through cracks during transitions;
• Increase investment capacity-building adolescents’ disability recognising early investments more effective cost-efficient responding lifelong dependence unemployment social isolation higher support needs adult hood.
• Require planning decisions explicitly consider availability Capacity Sustainability informal supports rather than assuming Families can absorb unmet Support Needs indefinitely.
• Recognize unpaid family carers as part Disability Support Ecosystem assess impact policy changes Carer Wellbeing Workforce Participation Financial Security long-term sustainability
• Undertake Independent Modelling Costs shifted onto other systems when disability supports reduced denied education mental health housing Health income support justice Systems.
• Prohibit automated decision-making being sole basis affecting participant eligibility support budgets funding allocations plan reassessments or access Scheme.

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

Submission 2132

• Ensure all proposed NDIS reforms are assessed against their long-term impact on participant outcomes including educationemploymentindependence social participation safety wellbeingandqualityoflife rather than shortterm reductions inscheme expenditurealone.
• Reaffirmtheoriginal purposeofofthenNDISasa schemethatpromotes inclusionparticipation independencedignity opportunityandsocialandeconomic contributionforpeoplewithdisabilityratherthanoneprimarily focusedon administrativecontrol complianceandcostcontainment .
• Ensures participants families advocates and peopledisabledcanengage inconsultationadvocacy complaintsandreview processeswithout fear ofan adverse consequences perceived retaliation or disadvantage infuture interactions with Agency
• Ensureplanningand fundingdecisionsarebased oncumprehensive evidenceoffunctionalcapacityincluding reportsfromtreating professionalsandractitioners withestablished understandingoft heparticipant’s disabilitysupportneedsandedailyfunctioning Functional capability is complex contextdependent often fluctuates over time It should not be determined solely through brief pointintime assessmentsor standardisedprocesses that cannot adequately capture therealties of a person ’slived experience.
• Require thenDIAtodemonstratethewayanyproposed reduction in participantsupportsis expected to improve particpantoutcomes increase independence ordreducet future support needsrathernsimply reducing Schemeexpenditure

Conclusion What I find most frustrating isthat my sonisthes kindofyoungperson the NDIS shoulbe investingin He16yearsoldHe hasgoals aspirationsandthe potentialtodevelopgreater indepenencebuthecannotdothatalone Heneeds supports accesscommunity build confidence developlifeskills prepareforemployment learn tonavigatetheworld safely transitioninto adulthood Insteaddespite significantevidenceofofdisability andfunctionalimpairment we are constantly being told about sustainability budget pressures antheneedto reducingspending Iunderstandthimportance ofreponsibleuse public fundsWhatIdonot understandis howitcanberegarded sustainable underinvest young people at exactlypoint where supporthas greatest capacity change course their lives

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2132

Every opportunity my son misses today becomes a barrier he will have to overcome tomorrow. Every skill he is not supported to develop now becomes a greater support needlater. Every year spent waiting, fighting for supports or trying to make inadequatesupportsworkisayearthatcannotbegivenback. The reformscurrentlybeingproposedappeartobebuiltontheassumptionthatsupportingwillsomehowcreategreaterindependence.Ourexperiencehasbeentheadverse.Independencenotachievedbyremovingsupport.Itisachievetheprightsupportattherighttime.Myfearsisthatyearsfromnow,governmentslookataincreasedunemployment,socialisolation, mentalhealthchallengesandhighersupportheedsamongstyoungadultswithdisabilitywonderhowithappened.Manyfamilysalreadyknowtheanswer.Itsstartswenthestopinvestinyoungpeoplebeforetheyhavehadagenuineopportunitytosucceed.