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

Submission 2038

Senate Submission

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

Template for: Parents / carers of teenagers with Cri du Chat (aged 10–18) Submissions due: Friday 29 May 2026

HOW TO USE THIS TEMPLATE: This template is a starting point. Please personalise it in your own words – especially the [bracketed sections in red]. Your own story is the most powerful part of any submission. Even small changes help. You can delete the instructions and prompts in purple boxes, and the note at the bottom about this template being prepared by the Cri du Chat Support Group, if you prefer your submission to be entirely in your own voice. When ready, submit at: hhttps://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/NDISFutureGenBill

Your submission protected parliamentary privilege: Under Parliamentary Privileges Act 1987 (Cth), submissions made are ‘proceedings parliament’. Thus they’re protected — same as what senators say chamber means:

• Cannot sue defamatory anything written submission even describe family’s experience NDIA frank critical terms; It criminal offence under federal law anyone including employer service provider or NDIS itself penalise threat treat less favourably because submitted Write honestly Tell story yourself The protects you About our Family I mother boy complex needs primary diagnosis Cri Du Chat syndrome epilepsy Level Autism lives with dad alongside younger sister Queensland has been an participant since Nov after previously accessed state-based early intervention scheme Better Start funding current plan provides essential support through therapies speech OT behaviour supports well-being these critical development safety wellbeing Why concerned Bill: NDIS Amendment Securing Future Generations) proposes changes would cause real harm Committee recommend amendments.

📝 50% cut social community participation funding loss independence-building For children teenagers Cri du Chat syndrome not just leisure it gradual supported development of independence connection life outside home exactly without disability experiences naturally

Submission

Currently this funding supports [name] (redacted) participate activities critical his development wellbeing long-term capacity building example able routine based outing worker afternoon week improve social confidence emotional regulation practice communication real world setting. This supports strengthen life skills adolescence help transition adulthood A cut mean reduced community-based programs supports isolation regression independent social develop impact increased anxiety behavioral challenges emotional distress Additionally we as parents would reduce working hours supervision proposed cuts There no alternatives available our community provide trained support requires This makes inclusion possible 20% reduction The Bill proposes %10 reduction therapy covering speech, optical physiotherapy behavior support children teenagers Cri du Chat syndrome Therapy phase ends ongoing part managing lifelong condition Communication support behavioural regulation physical management require consistent skilled intervention teenage adults currently receives fortnightly speech OT therapy average 6 weekly behaviour support Reduction mean lose session month choose between speech and optical progress years could lost without consistent support At time when approaching transition adulthood high-risk period any reduction in therapy funding sends wrong signal creates risk Transitioning adulthood planning uncertainty is approaching transition adulthood stressful uncertain family Proposed changes including shift functional reassessments broadened parental responsibility provisions create serious certainty about what funding will be available during after that transition Expectation continue providing substantial care into adulthood does not reflect reality families need NDIS support plan future where adult can live dignity appropriate independence Restricted access to plan reviews The Bill propose make harder request unscheduled review extending response narrowing grounds teenager active development circumstances change transitioning school years workers services significantly affect needed Removing right seek timely review those changes efficiency measure denial basic right correct plan

National Disability Insurance Scheme Amendment

Submission 2038

• Amend or remove proposed section 34A (the Minister’s power to cut funding categories without individual assessment or right of review). • Ensure social and community participation cuts do not apply to young people who require 1:1 funded support for community access and independence development. • Reverse the 10% therapy funding cut, particularly for teenagers with ongoing therapy needs approaching major life transitions. • Protect the right to seek plan review when circumstances change, especially during transitions. • Revise the parental responsibility provisions to account for the reality of caring for a child or teenager with high and complex needs.

My Family’s Story

was diagnosed with Cri du chat syndrome at 20 months old shortly after his 4-week-old newborn baby sister.He was later diagnosed with ASD Level 3 and Epilepsy,making hima very medicallyand behaviourallycomplexchild.Although he’s 14 yearsold,hewhassignificant learning difficulties,delayed grossandy finemotor skills,is non-verbal,and requires constant supervisionandsupportashehasno understandingof safetyor personal boundaries.Despitethesechallenges, isahappy,curious,a lovingchilddothriveswith routinecommunityaccessandasupportedactivitiesthat helphimbuildconfidence,social awarenessandandependence.A good dayforhimisbeingabletosafelyparticipateinthe communityengagewitthersothersandenjoymeaningful activitiesewiththerightsupportsaroundhim.NDISfunding isessentialtomakingsthispossible.If thisfundwascut,,wouldlosemanyopportunitiesthat willhelphimgrowandeverydaylifewhichthenwillleadtoincreasedanxietybehaviourally challenges anda significantimpactonhiswellbeingeourfamily’abilitytosupport himsafely.InsummarycontinuedaccesstoappropriateNDISsupportiscriticalavital toensure canlive withdignity,inclusivitysafety,amostimportantly thebestquality of life possible.

Sign-off

Yours sincerely, Full name: Suburb / State: , Queensland Email: Phone: Publication preference:redacted Please keep myname private (circle one)