Submission: A note from an Autistic Person with Communication Disabilities

Preliminary Statement - Acknowledging Challenges

Before beginning our submission today, I want you all to understand that it may not meet your expectations regarding structure or professionalism. as submissions often require clear communication about how proposed legislation will affect my safety, functioning capacity, parenting ability, employment opportunities,and future prospects, which is inherently difficult due to many autistic individuals’ struggles: difficulty organizing thoughts linearly, summarizing complex lived experiences succinctly while managing emotions during distressing moments, or translating years spent working invisibly into language deemed ‘professional enough.’ The task itself can be challenging! We repeatedly face these demands just so we might access support systems, defend those supports when necessary, j ustify their existence, even now fighting for them to remain intact. Even writing this letter has been emotionally taxing! I ask everyone reading not focus solely upon its formatting but rather consider what it truly represents—my reality.

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

Submission 2262

Personal Context

I am an autistic Level 1 woman living with complex trauma related to family violence and coercive abuse. My daughter is autistic Level 2. Under the proposed tightening of eligibility and functional capacity requirements, both of us could be considered the type of participants the government wants redirected away from the NDIS and into underfunded “foundational supports” or mainstream systems that are already overwhelmed.My daughter may be told to rely on programs like Thriving Kids instead of the individualised disability supports she actually needs.

Functional Capacity

What this bill fails to understand is that many autistic people — particularly women and children — survive by masking.We are not “less disabled” because we can sometimes appear articulate, compliant, intelligent or nfunctional in short assessments.We are often exhausted, burnt out, dysregulated, and barely coping behind closed doors.This bill appears to punish people for surviving or not being“disabled enough”.

Limitations of Functional Capacity Assessments The proposed emphasis on “functional capacity assessments” is deeply concerning because functioning fluctuates.I can when supported communicate professionally, advocate for my child, or appear composed in appointments while privately struggling to regulate sensory overload,hypervigilance(executive dysfunction),trauma responses,and burnout.Professionals often see a small snapshot of our lives.They do not see the aftermath.They do not see me sitting in my car crying after appointments because every interaction has required enormous effort to hold myself together. They do not see the nights where I am so overwhelmed by the cumulative demands of parentingadministrationtherapiesmental loadand daily functioningthatI cannot speak properlyormovefrom exhaustion.Theydo notheavysimple tasks take whenthebothmy daughter andairederegulated.Theydonothaveconstant mentalload involved intryingtokeepourlivesstableandsafe.Disability doesnotdisappear simplybecause itis hidden.Thesechangesignore reality.

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

Submission 2262

Failure of “Foundational Supports” and Mainstream Systems

The reality is that mainstream systems are already failing disabled families. Schools are overwhelmed. Mental health systems are overwhelmed. Public paediatrics are overwhelmed. Family violence systems are overwhelmed. Parents are overwhelmed. Redirecting disabled children and adults away from the NDIS does not magically create support elsewhere. It simply leaves families unsupported until they reach crisis point. For autistic women especially, the consequences are severe. Many of us were diagnosed late because we spent years masking and internalising distress.We already struggle to be believed. We are already told we are “too functional” for help while privately drowning.The government speaks about“foundational supports,”

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

Submission 2262

Support workers are often the difference between my daughter getting to kindergarten or not. On difficult mornings, my daughter can become so distressed about attending kinder that the process of leaving the house can take an additional one to three hours. She may refuse to dress, refuse to get in the car, become physically dysregulated, scream, hit, kick, or attempt to flee. This is not “bad behaviour.” It is disability. Without support workers, I am left trapped in impossible situations.I have had mornings where I am forced to choose between: • arriving at work one or two hours late yet again and hoping my employer understands for the third time that week, or • attempting to drive an unrestrained, highly distressed child to daycare while she kicks me,screams, and dysregulates in the car, praying I do not crash the vehicle, get pulled over bypolice, or lose control while trying to keep us both safe.Then we arrive at daycare,where I leave my child screamingand requiring physical restraintby educatorswhile Idrive away shaking,dysregulatedtraumatised,andtryingtosomewhowfunctionatworkafterward.Thisis thereality hidden behind discussionsabout“schemesustainability.”Theseare notaabstractadministrativechanges.Thesedecisionsdeterminethetherwhetherdisabledparents cansafelytransporttheirchildrenmaintainemployment regulateg their nervous systemskeeptheirfamiliesstable.Withoutsupport,thechoicesbecomeunsafe nomatterwhichoptionwetake. This isthewhat unsupported parenting looks like.

What Support Workers Actually DoPeople hear “support worker” anda imagine luxuryorconvenience.In reality ,supporthelperswiththingsmostpeopletakeforgranted: • helping transitionmy daughter intothecar safely •helping calmherenoughtoleavethehouse • supervisingwhilI showeroregulate aftersevereoverwhelm • helpings memanage householdtaskswhenexecutive functioningcollapses• assisting withemotionalco-regulationduringmeltdowns

• helping maintain routines that prevent crisis escalation
• simply providing another regulated adult presence so everything does not fall apart There are days where additional hour or two hours’ worth makes a difference between:
  • My daughter attending kinder versus complete school refusal.
  • Me remaining employed vs losing job,
  • A regulated household, both spiralling into distress; or safe environment against crises.

Breakdown Without SupportsWithout supports basic daily function begins collapsing very quickly.Meals become harder.Cleaning becomes impossible.Paperwork piles up.Phone calls go unanswered.Appointments missed.I increasingly isolate myself housebound.Burnout escalates.My child becomes dysregulated because children absorb stress overwhelmed parents.

Purpose Of SupportPeople often assume parenting support means someone else raising your kid.That is what this isn’t.The NDSS support lets remain stable parent my needs.It helps recover enough from overload respond calmly instead reactively.Meet her sensory emotional needs consistently.Working part-time despite disability significant caregiving demands.Keep home functioning.Survive.

Flow-On Effects: Workforce And Economic ImpactI’m also workforce supporting NDIS.

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

Submission 2262

I work in a very specific role, working with autistic Level 3 participants, severe intellectual disability, complex participants in the NDIA complex pathway, youth justice clients and out-of-home care clients. There are very few people who want or have been employed in these areas before me because there is often no plan between $1-5 million per year available on my behalf as part of my plan which allows approximately 40k Centrelink income support but also means losing tax contribution so private health insurance cannot be paid nor afford specialist services such as paediatricians or psychiatrists adding burden onto public systems; joining into waiting lists due inability paying rent privately; recovering from carer burnout becomes impossible leading deterioration especially amongst those suffering autism where self-injury shutdowns may occur along side mental decline resulting emergency department visits hospitalization child protection involvement etc., My three support workers not being registered providers include occupational therapy student supporting herself through study giving back to community nursing students doing same mother having experience years within field education, Their charges less than an agency more importantly they do charge kilometres setup fees notes administrative time extra minutes shift real life requires yes can go agencies cost you far more.

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

Submission 2262

System Impact

These reforms claim to reduce costs, but the likely outcome for many families will be increased involvement with:

• -child protection* emergency mental health systems family violence services hospital systems homelessness services* The NDIS currently prevents these outcomes for my family and saves your government hundreds of thousands of dollars.

Early Intervention

Finally, the position on early intervention –and the proposal to redirect children with“mild delay” anda moderate delay into other systemsfundamentally delays the very purposea natureofearlyintervention.It does not reduceneeda It delays it.I was part a BarwonNDIS trial.Atthat time we hadpackages$12k $16ka nd$22k—the Level la 2nd3o ftransdisciplinaryearli intervent ionsupport.Thiswas aroundla7.There is now discussion about returning topackages.But do you have data from those trail sites? Because this wastrialled.Itwa sthen removed in favour o ECEI partners — NDIA design decisions. Andnowwearespending significant resources torestructure back toward something that previously existed.My daughteris often described as poster childfor ear li ntervention.Shebegan receiving support atra5Attha ttime shehad global developmental dela ySheWas traumatised There wass DFFH legal involvement.Childreninthispositiondono simplycatch upwithout individualisedsupport.Manygoonbecometheyoung peopleyoulaterseeinyouthjustice systems.They become highlytra umatized dysregulatedadolescents.The substanceaffected youngpeople The casesrequire intensive highcostinter vent ionThe ones laterdescribedinthemedia ine xtre mterms—the“machete kids”.That isthe trajectory without early intervention.NDIS changedthattraj ectoryformydaughter.

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

Submission 2262

She received speech therapy, occupational therapy, play therapy, and psychology. I received parent support, because early intervention is not about just the child — it’s also stabilizing around them. As result she now preparing enter Prep mainstream school year 27. That what early intervention supposed do. it reduces long term complexity to reduce longterm costs allows children families stabilize instead escalate. Redirecting children with early developmental delay away from does not save money. delay until needs more entrenched complex expensive address. Early intervention saving money avoid much higher later. The flexibility within my funding wasteful spending. is early prevention safety preservation family. This bill risks creating systems visibly impaired qualify everyone else expected survive unsupported break. My daughter I budget figures. human beings trying to in failing us when you vote this bill remember removing cost urge consider actual “saving” Bi short-term reduction line but increase system demand Complexity human harm deciding where that cost will go Sincerely of your .160, ,.