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

Submission: [2133] To the Senate Community Affairs Legislation Committee, I am writing as Lucien’s mother and part of our family who advocates every day. Our son Lucyen turns nineteen this month; he’s also registered under the NDIS scheme which we’re deeply concerned about due its potential impact upon us all—especially considering Lucyen has complex lifelong disabilities such as intellectual disability, Autism Spectrum Disorder Level III, ADHD, OCD generalized anxiety disorder Tourette syndrome sensory processing disorders epilepsy etc., The combined effect these conditions create makes it impossible just looking at one diagnosis alone. His impairments interact constantly throughout each moment of everyday living affecting communication emotional regulation flexibility personal care decision making sense tolerance social understanding independence safety within community context. Lucyens needs cannot be understood through single diagnoses or simplified views functional capacity any reform assessing people too narrowly links funding tightly with singular impairment risks leaving individuals like Lucyen unsafe unsupported excluded. Last year Lucyen graduated from school marking major life transition when young adults leave education their support requirements increase significantly previously structure routine supervision connections predictable expectations supported environment five days week now adulthood those necessities shift into broader societal framework. Nowadays Lucyen requires more assistance not less to build his adult future attending daily activities volunteering alongside professional caregivers essential supports preventing isolation maintaining routines supporting mental health allowing continuous skill development in safe meaningful ways.

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

Submission 2133

Lucien’s Support Workers Help Him Navigate Daily Life

Lucien’s support workers help him understand what he needs to do throughout the day. They assist him through social interactions that may seem basic yet are challenging due to lack of natural understanding on his part; they explain expectations, support effective communication; help interpret surroundings to navigate confusing environments safely without overwhelming stress.

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

Submission 2133

Social and community participation is particularly important for Lucien. Without support, his intellectual disability, Autism Spectrum Disorder Level 3, anxiety,OCD,Tourette syndrome ,ADHD,sensory processing difficulties and epilepsy all affecthis ability to copewith change, to manage unexpected situations,tocommunicatehiscareedsregulate emotions andremain safe in busyor unfamiliar environments .Volunteering anda ndcommunity activities giveLuci en purpose structureconnection.They allowhimto contribute,nott just receive care Theyalsohelphimpractise communication,independence,flexibilityandeverydayliving skillsRemovingorreducingthesupportswouldnotmake hisneedsdisappear Itwouldsimplyleave him at home increasehi s isolation reduce hi soportunities t o learnand place much greater pressureon our family We are deeply concerned about any changesthat may reducefundingfor socialanda n dcommunit yparticipation supports ForL ucie ns thesesupportsaredirectly linked tob e h i swellbeingdevelopmentindependencenandsafetyThey a re part of how helearnsbe ayoun gadultinthecommunity The also help prevent regression distresscrisis As parents we provide significant unpaidcare supervision emotional support an coordination every day Howeverwealsoneed tow orkWe cannot afford notowork,an it is nor esonsableorsustainableexpectfamiliesabsorbimpactofreduced NDIS funding If Lucien’ssupportsa cut the responsibility does nos disappearItis shifted back ontoparents and families oftenat cost employment financial security mental health longterm carer wellbeingTheNDIScurrentlywhatallows L uci entohave lifebeyondourfamilyhome I talso allows us ashis parentsto remain inpaid work whileknowing thatheissupportedby peoplewho understandhimIffundings reduced wewoulde forced to fillthegaps ourselves That wouldplace ou r famil under enormous strainwou ldreduceLuci en’ sindependence confidence opportunity participate adultlife Weparticularlyconcernaboutanyapproachthatfocusesmainl onscheme sustainabilityor reducing costs without fully considering therelife impacton participantswith complex disabilities Luciensdisabilitiesarepermanent His supports needs aresignificantandongoing Reducing hisplanwouldnot reduc e h i s disability relatedneeds;itwouldsimplyremovethesoportsthathelp himlive safely with dignity connection Wealso concerned about functional capacity assessments ifthey applied too narrowlywithout deep understanding ofcomplex disabilit yL ucie nscapacity changesdependingonevironment sensory demands anxiety routinechanges

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

Submission 2133

communication difficulties, epilepsy-related risks, the complexity of the task and the familiarity of the people supporting him. He may appear more capable when he is calm, regulated and supported by people he trusts. This does not mean he can function safely going that support. Functional capacity must not be assessed as a snapshot. It must consider the person’s whole life including personal care emotional regulation communication safety therapy neds social participation sensory needs informal supports and the risk regression if supports reduced it also consider impact on families carers young adult should assess needing less support simply parents trusted workers doing significant invisible work behind scenes I am concerned about any changes harder keep stable support workers luciens current know well they understand how through anxiety sensory overload transitions personal care epileps related safety needs communications challenges community access trust this cannot replaced easily For with Autism Spectrum Disorder Level intellectual disability anxious complex support change extremely distressing losing familiar or having services disrupted because new administrative provider requirements could have serious impact Any registration compliance changes must proportionate unintentionally remove safe experienced trusted from participants’ lives We safeguards quality services action against fraud however these aims come at expense vulnerable rely individualised The system target misuse poor practice without punishing participants who using funding appropriately meet genuine disabilityrelated needs Also concern automated decisionmaking decisions made proper human understanding individuals Lucens needs data alone His disability complex interaction between diagnoses affects functioning every day Decisions his supports involve review clear reasons evidence meaningful rights appeal Advocating for Lucien because cant fully advocate himself others may able He has views preferences rights but needs to information communicate needs make remain world around him

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

Submission 2133

As his family, we see the reality of his disability every day. We also see his potential. With he right support, Lucien can continue to learn, participate, volunteer, buid skills have a meaningful adult life Without that support he at risk isolation distress regression reduced safety Our family asks bill be amended implemented in way protects participants lifelong disabilities In particular ask:

• Social community participation supports not reduced through blanket broad funding cuts
• Young adults leaving school recognised needing strong transitional into adult life
• Volunteeringcommunity activities essential disability supports optional extras
• Personal care fully recognized when assessing funding functional capacity
• Supported decisionmaking an essential participant who need help understand information consequences risks Epilepsy related daily living supervision are considered needs families expected replace funded unpaid care Functional assessments individualized transparent conducted qualified professionals complex disability The impact on carers before any reduction Stable worker relationships protected especially with Autism Spectrum Disorder Level intellectual anxiety epilepsy and complex support Provider registration changes proportionate do disrupt safe trusted arrangements Automated is used make significant decisions about access planning funding or reductions without human review clear appeal rights

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

Submission 2133

Foundational Supports Not Replacements For Individualized NDLS Support

Foundational or mainstream supports do not treat as replacementsfor individualisedNDISsupports unless they actually exist, are accessible,safe,and appropriately skilledand abletomeettheparticipant’sneeds.

Lucien’s Case

Lucienis now an adultbut he isnot independentinthewayother19yearoldsmaybe.Hissdisabilities significantly affect his daily life,his personal carehissafetyhis abilitytomanage change , hiusunderstandingoftheworldaroundhimandhiiscapacitytoparticipate in themcommunity.TheNDSI gives himthesupporthe needstolivewith dignityanda purpose .We arenot asking forluxury.Weareasking forthesupports that allow Lucientobe safe cleanregulated engagedincludedandsupportedasyoungadult.We arerequestingforsystemthat recognises thatchallengedisabilitydoes notas disappearwhen ayoungperson leaves schoolorturns8TheNDISShouldbesustainable but sustainability must no be achieved by cutting essentialsupporthfrom people with lifelong and complex disabilities.If supportareduced the cost will n disappearing.Itwillbeshiftedonto familiescarers hospitals crisis services anda wider community Please ensure this Bill does nota away frompeople like Lucienn live safely participate meaningfully continue learning,have afuture beyond family home This is not only about scheme sustainabilit Itisa boutdignity inclusion safety,and therights of peopelwihcomplex disabilties to b properly supported.

Yours sincerely, Rebecca Monetti Lucien’s mother advocate Parent o f Lucien 19 year old NDIS participant