Submission: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission No.: 2084
Submission to the Senate Community Affairs Legislation Committee – Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024
I am the parent of an 9-year-old autistic child with PDA profile ADHD anxiety I making submission anonymously share family’s lived experience with NDIS concerns direction proposed reforms. Our Family involved since NDIS years prior this privately funded limited therapy supports from while trying support our without adequate assistance My Child currently attends specialist school after experiencing significant trauma within mainstream setting unable appropriately meet even basic disability adjustments During period experienced severe anxiety dysregulation at School Sensory needs accommodations not consistently understood implemented which resulted repeated distress full meltdowns episodes absconding classrooms environments Behaviours were bad behaviour signs a in significant distress whose disability needs safely supported During time my was out approximately three months due mental wellbeing concerns This reinforced that main educational settings cannot simply replace specialised therapeutic and disability supports External therapy Behaviour Support through became essential helping rebuild trust emotional safety capacity engage learning again The has provided access therapies Supports improved child’s safety, regulation Learning social understanding overall well-being also reduced pressure prevented further escalation crisis Our first plan included occupational speech psychology however funding amount insufficient allow regular all recommended plans include Occupational Therapy Speech Therapy Behaviour Support work difference made life significant Occupation helped identify sensory understand how different impact functioning develop practical strategies regulate emotions nervous system Also helped their neurotype positive affirm way improving self-esteem reducing shame around being Autistic Speech therapy supported navigate friendships Identify safe consent personal space recognise another person may feel uncomfortable These are
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2084
critical life skills for vulnerable autistic children and cannot simply be taught through standard classroom learning.
Behaviour support has helped our family and child understand the causes of emotional distress and dysregulation, identify triggers and preventative strategies, and reduce fight-or-flight responses. This has created safer environments for both our child and the people around them. Behaviour support has also assisted teachers and school staff to better understand how to provide appropriate support within educational settings. Support workers have helped my child rebuild trust in other people after traumatic school experiences, re-engage with the community, leave the house more confidently, and participate in activities that support emotional regulation concentration and learning readiness. My child’s transition to the current specialist school has only been successful because of the combination of reduced school hours, appropriate disability supports therapeutic intervention, and consistent support workers These supports have helpemychild feel emotionally safe enough to re-engagewith education anthe communityafter significantschool trauma Supportworkershavealsoplayedanimportantroleinhelpingmychildderegulateafterschoolrebuilttrustinothersparticipateinaactivitiesthatsupportlearningreadinessandeemotionalwellbeing WithoutthesupportsoureffamilyabilitytomaintainemploymentfamilystabilitwouldbesignificantlyimpactedThis highlightsbroader role thenDISplaysnotonlyinsuppor disabled children directly but inprenenting familiyburnoutallowinfamiliesremain connectedto workcommunitylife Importantlyconsistent access therapy through NDIS allowed us reducemedication We sawsignificant improvement once regulartherapy became financially accessible compared minimal privately funded theraphy we were previously able afford Our experience shown consistentherapeuticdisabiltysuppors farmore effective humane cost-effective than waiting untilchildren families reach crisis point before hel is provided Oneof my greatest concerns proposed reforms increasing burden placed onfamiles repeatedly prove permanent disabilities justifysupports ongoing reports assessments Families required spend thousands dollars Functional Capacity Assessments supportingreports simply continue accessing supoorts lifelong disablities Allied health therapy itself already costs close $194 per hour Everyhour funding spent unnecessary evidence gathering reassessment funding taken away from therapy practical support improves child’s daily functioning wellbeing
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2084
The current system already places enormous emotional and financial strain on families. Requiring repeated reassessment for permanent disabilities does not improve outcomes for children. It simply redirects funding away from therapeutic intervention and into administration. I am also deeply concerned about the increasing expectation that mainstream systems, particularly schools, should provide supports that are currently funded through the NDIS. Our family’s experience demonstrates why this approach is unrealistic and potentially harmful. My child experienced significant trauma within a mainstream school environment cannot appropriately accommodate disability needs despite repeated attempts to seek support and adjustments. The suggestion that schools can replace specialist disability supports does not reflect the reality many families experience.Teachers and schools are under pressure often do have training resources time or relationships required to support complex autistic children particularly those with PDA profiles.For children like mine trust emotion safety essential foundations engagement learning Therapy success has depended heavily being able choose professionals understand neurotype trusting relationship could develop My highly sensitive unfamiliar people environments Finding right therapy team been critical progress.I concern reforms reduce participant choice control over who provides support how delivered For my child therapy home significantly more effective than clinic based School-based support Familiar emotionally safe allow engage regulation participation ways possible elsewhere Flexibility in delivering supported achieved positive outcomes I worry reforms may unintentionally punish families whose autism anxiety PDA profiles require individualised relational flexible approaches Progress rarely linear depend entirely on trust nervous system safety Without continued access consistent appropriate supports believe there increased distress disengagement social isolation behavioural escalation burnout greater reliance crisis services medication These outcomes only harmful for children Families ultimately costly society The NDIS allowed our move from crisis management stability understanding prevention That should undermined by reforms
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2084
that reduce flexibility, increase administrative burden, or assume mainstream systems can fill gaps they are not currently equipped to manage.
I respectfully ask the committee to consider the following recommendations: • Reduce unnecessary reassessment and reporting requirements for permanent disabilities. • Ensure funding is directed toward direct therapeutic support rather than excessive administrativ e evidence gathering. • Protect participant choice and flexibility in selecting providers and determining how supports are delivered. • Recognise the importance of therapeutic relationships, emotional safety and individualised approaches for autistic children, including those with PDA profiles. • Avoid relying on mainstream schools as substitutes for specialist disability Supports . • Ensure reforms do not shift increasing responsibility onto unpaid carers and fam ilies already under significant pressure. • Protect access to early intervention and consistent supports that prevent crisis an d long-term escalation. Thank you for the opportunity to provide this submission and consider the lived experiences o f families navigating disability support systems every day. While there is always room t o improve the NDIS ,reforms must not lose sight of the real people affected by these decisions. For familie s like ours,thesesupportsarenot optional extras.Theyaredifferencebetweensurvivalandstability,bet ween isolation anda ndparticipation,andbetweenongoingtraumaagenuineprogress.