Submission to the Senate Standing Committee on Community Affairs

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

Introduction

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am the mother and primary caregiver of my son who lives with Autism Spectrum Disorder PANS/autistic regression He also experiences severe anxiety difficulties emotional control obsessive-compulsive behaviours tics increasingly complex behavioral and mental health presentations all which significantly impact his ability function independently partake everyday life Iam deeply concerned about proposed changes contained within this bill particularly cuts Capacity Building Social &Community Participation supports reduction participant review rights increased use automated decision-making level power legislation gives government bureaucratic systems override recommendations qualified health professionals While understand importance ensuring long-term sustainability ndis these reforms go far beyond targeting waste fraud They risk removing critical supports from most vulnerable people in our community shifting burden directly onto already exhausted families carers schools hospitalsmental health systems ## Parliamentary Scrutiny and Transparency The consultation period for this bill is completely inadequate considering scale seriousness Proposed reforms Families disabled children are under immense pressure managing appointments therapies school issues mental health crises behavioural incidents day-to-day care responsibilities Short consultation makes it extremely difficult like mine properly understand legislation seek advice prepare submissions participate meaningfully democratic process Disabled peoplecarers deserve genuine consultation not rushed reforms lifelongconsequences Recommendation: Amend consultatio nperiod best practice minimum days Key Decisions Left to Ministerial Instruments Rather Than Parliament

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1535

I am extremely concerned that this Bill allows Ministers to make major decisions about eligibility and funding through ministerial instruments rather than full parliamentary scrutiny. This means essential supports could potentially be reduced or removed without proper public debate, transparency, or accountability. Families already live with constant uncertainty and fear about the future. Giving government departments broader powers to change supports without proper oversight will only increase that fear. Recommendation: Require all decisions affecting eligibility and funding levels to be made through primary legislation subject to full parliamentary scrutiny and consultation.

Reasonable and Necessary Supports Being Restricted by Budget Measures I am deeply concerned that the proposed reforms shift the focus of the NDIS away from what is “reasonable and necessary” for an individual participant and toward broader budget control measures.The NDIS was originally designed to provide supports based on a person’s disability-related needs goals functional capacity circumstances These proposed changes risk replacing individualised support decisions with decisions driven primarily cost-cutting overall scheme expenditure targets For families like mine This creates enormous fear That supports may no longer determined disabled person genuinely requires remain safe participate education community build independence avoid crisis instead fits predetermined budget limitations categories Children complex disabilities behavioural mental health presentations often require highly individualized supports cannot measured against generic funding caps standard assumptions Restricting access purely reasons risks causing significant harm undermines original intent NDIS Providing limited level below professionals identify as necessary prevent participants achieve any meaningful progress stability Inadequate supports fail long-term outcomes ultimately creating greater pressure family schools hospitals mental health systems emergency services Recommendation Ensure all funding decisions remain individually reasonable necessary support needs taking into account their disability, function safety wellbeing long term outcome family circumstance professional evidence. Budget sustainability must not override essential rights required maintain participation independent review

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

Submission 1535

Appeal Decisions Where They Believe Reasonable And Necessary Supports Have Been Unfairly Restricted Or Reduced.

Requirement To Exhaust Treatment Options Before Eligibility I am deeply concerned about proposals requiring disabled people to exhaust treatment options before accessing the NDIS. Children like my son already attend countless appointments, therapies, assessments, and interventions. Families should not be forced into pursuing endless treatments simply to prove eligibility for support. Not all disabilities can be “treated away,” and many therapies are financially inaccessible geographically unavailable, or inappropriate for individual circumstances.These barriersare even greaterfor families living in ruraland remote areas where access to specialiststherapiesassessmentsmental health supportsdisability services is often extremely limitedor non-existent.Familiesshouldnotbe penalizedordeniedsupports because appropriateservices areunavailable unaffordable orinaccessible based on wherethey live.Recommendation: Do no proceed with any requirementtoexhaust“appropriate treatm entoptionsbeforeeligibility.Professional RecommendationsAnd Automated Decision-MakingAnother major concernisthe increasing shiftaway from relyingon qualifiedhealth professionals toward bureaucratic ora utomated decision-making.Psychologistsspeech therapistsoccupational ther aptistsphysiotherapy paediatriciansbehaviour specialistsschool spend years workingwith childrenlikemine.Theyunderstandthecomplexityof thesechildren’s needsbecause they directly witness theday-to-day impactsfunctioningcommunication behaviour emotional regulation educationfamily life.Yet famili es increasingly finding that extensive professional evidence and clinical recommendationscan simplesoverridden.That istrue frightening.Healthprofessionals regularly recommend far more therapyandsupport hours than what actually funded meaning famil ies already trying to manage highly complexneeds inadequate support.Children like my son cannot be reducedtick boxes algorithms computer-generated decisions.His need scomplex fluctuating and deeply individual.No automated system can fully understand the impact his anxiety OCD behaviours, emotion al dysregulation tics fatigue behavioural escalation developmental challenges have oneverydaylife. RecommendationDo notproceedautomat eddecisionmaking systemsor standardised assessment tools unless independently validated across diverse disability groups accompanied by strong human oversight transparency full review rights.

Supports Cut Before Replacement Systems Exist

I am extremely concerned about cuts to social, civic, and community participation supports before Foundational Supports are fully operational. Capacity Building and Social & Community Participation supports are central to what the NDIS was originally designed to achieve; independence, inclusion, participation, prevention, and long-term positive outcomes. Removing or reducing these supports undermines the entire purpose of the scheme. My son is currently in a support class placement at high school where he requires regular one-on-one support throughout the day. Even within a highly supported environment, he experiences severe emotional dysregulation, fatigue, aggression, distress, and school engagement difficulties. There have already been multiple serious incidents involving aggression, self-harm statements, threats toward staff, destruction of property, and behaviors posing risk to himself and others. During an especially serious episode, his condition deteriorated so severely it led us contacting emergency services for help with my child’s needs becoming too great even when I had significantly reduced work hours due to taking over father’s business.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1535

Participants and families must also retain full rights to have decisions independently reviewed and appealed where they do not agree with funding reductions or support changes.

Parental Responsibility and Caring Burden

I am also deeply concerned about the increasing expectation that families will absorb growing levels of care when supports are reduced or removed. Parents of disabled children already provide enormous amounts of unpaid care well beyond what would ordinarily be expected fora child or young person of the sameage without disability. Many families are managing complex medical needs, behavioural support, emotiona lregulation difficulties,school engagement issues , therapies appointments supervision,and crisis situations aroundthe clockwith very little respiteorsupport . The reality isthat manyfamiliesarealreadyfunctioningbeyondcapacity.Reducingsupports furtherwillnot makeneedsdisappear,itwillsimplyforceparentsparticularly mothers,tocarryeven greater caring burdens atthexpenseoftheirownemployment health mentalwellbeingfinancialsecurityandabilitytosustaincaringlongterm Without adequate support,familiesaretargeriskoffburnoutmentalhealth deteriorationfamilybreakdown financialhardship anda ncrisisinterventioninvolvement These outcomes arerarmfulno t onlyforcarersbutalsoforthedisabledchildrenwhorely onstableandsupported caregivingenvironments Recommendation: Ensure thenDIS clearly recognisesthedifferencebetweenordinary parental responsibilities for achildoryoungpersonoft he sam e agewithout disabilit y an dthesignificantlyincreasedcare ingresponsibilitiesassociated withd isab ility.Funding decisions should properly consider carercapacity sustainabilityo finformalsuppo rts risks of burn out and thelong term wellbeing o fbothdisabledparticipantsan dfamily es.No reduction in supportsshould occurwhere doing so would place unreasonable or unsafe caringexpectationsontof am ilies.

Human Rights and Long-Term Consequences

These proposed reforms raise serious human rights concerns. Disabled people have the right to access suppor ts that allow themto participateinsociety, acces seducationbuild independencemaintainsafety,andlivewith dignity .Removing supp ortsthatdirectl impactcommunicationemotionalregulationparticipation , developmentremovesopportunitiesando qualit oflifefromvulnerablepeople.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1535

The flow-on effects of these reforms will impact entire families. When supports are removed, the burden does not disappear; it shifts directly onto carers schools hospitals mental health systems and already overstretched services. PARENTS reduce work hours or leave employment entirely Financial stress increases Carerurnout increases Family relationships break down under constant exhaustion pressure Siblings affected Disabled persons become more isolated and more vulnerableto crisis.These proposed changes also disproportionately affect women who make up most unpaid caregivers for disabled individuals and family members When supports reduced or eliminated It is overwhelmingly mothers grandmothers female care providers expected absorb increased caring responsibilities This often forces women to reduce working hours completely sacrifice career progression superannuation financial security physical well-being in order fill gaps left inadequate support The caregiving load on women immense These reforms risk pushing many families beyond breaking point Increased unpaid caregiving duties contribute social isolation,financial hardship,carer burnout relationship breakdowns poorer long-term outcomes whole families Rather than promoting independence participation cuts trap both disabled people their caregivers cycles crisis exhaust disadvantage Capacity Building Social Community Participation investments prevention inclusion long term outcomes Removing them create greater suffering far longer costs families government systems Please listen voices living this reality every single day before making decisions that have lifelong consequences Vulnerable children futures Yours sincerely