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

Submission 2076

Senate Submission

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

Template for: Parents / carers of young children with Cri du Chat (aged 0–10) Submissions due: Friday 29 May 2026

About our family

— I am the parent of redacted, who is years old years old and lives in redacted NSW (with a year-old brother and -year-old sister.). Redacted has Cri du Chat syndrome, a rare genetic condition caused by a deletion on chromosome that is present from birth permanent*, and in redacted’s case* significant physical mental developmental delays e.g., he nonverbal wears nappies fed clothed cleaned etc similar to an-year-old. RedactedisanNDISparticipant.Hiscurrentplan supports him primarily speech therapy OT community access support workers.Thesupports are not optional extras They make it possibleforhimto develop be safe partofourcommunity.

WhyIamconcernedaboutthisBill

Iwritingtoppose severalprovisions NDISEmendment SecuringtheNDSFutureGenerationsBilthat would significantly harm my childandfamily.IurgetheCommitteerecommend amendments before this Bilpassed.

The5%cuttosocialandcommunityparticipationfunding

The Bill proposesa cut social communityparticipations fundingfromOctober. This isthesupporting redacted accesstocommunity safely Children withCriduChatsyndromecannotaccesstocommunitywithouttrained familiarsupport worker.This preference — safety reality. currently assistedbyasupporworker get local pool occasional park week though we additional funding help himaccess the community more than this So halving this funding mean his abilitytocommunity safelysignificantly reduced and hewould have less connectionwiththecommmunity There is no cheaper alternative Community programs that do include individually funded suppo cannot safely support achild redact’s level of need to 10% cut totherapy fundergation also proposed reduction capacity building budget used for therapy including speech occupational physiotherapiesy Chat syndrome not optional it development happens Early intervention critical greatest impact longterm outcomes currently receives weekly OToccasionalspeech therapietion inevitable means he loses some sessions negatively impactsdevelopment children complex lifelong conditions should subject blanketbudget reductions Their needs clinically established individuall assessed

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

Submission 2076

Broadening of parental responsibility

The Bill expands what will be considered ‘parental responsibility’, including for intensive, specialised, or 24-hour care. Our child’s support needs far exceed what other parents of a similar aged child are required to do – it is roughly ten times more intense than parenting our six- and eleven-year-old. On an average day like today [redacted] woke up early; he trashed their room: pulled all drawers from shelves; dumped everything upside down inside them until they were empty again before scattering soft toys across every corner of this space. We have clean up after him before we can feed him his special diet slowly prepare food specially made justforhim, wrestle away from smashing TV and other items around home, then send off school as Monday morning arrives. After school he requires one-on-one care feeding monitoring etc to prevent himself hurting others (e.g., banging head violently on hard surfaces, pulling hair, scratching people). My husband & I already provide most if not nearly all caregiving responsibilities. Without compromising health work ability caring other children we cannot offer more. The NDIS was designed specifically cater families’ inability meet these demands while providing priority program access those with permanent severe disabilities such as [redacted].

Eligibility And Early Intervention Cri du Chat syndrome genetically confirmed lifelong condition critical earliest months life Children affected may yet show measurable reduced functional capacity infancy but need for intervention clinically well established should not depend whether baby demonstrate limitations at birth A reassessment process based function rather diagnosis does account documented profile of Cri du Chat risks denying early intervention needs it most time greatest impact.

What Am Asking

I am asking the Committee recommend following amendments Bill:

• Remove or substantially amend proposed section 34A blanket category-wide funding cuts without individual assessment; Ensure social community participation cuts do apply child rely funded support safely; Reverse percent therapy cut active early intervention; Retain automatic access diagnosed genetic conditions like Cri du Chat syndrome protect early intervention infants; Revise parental responsibility provisions require consideration specialist nature and family’s overall wellbeing.

My Family’s Story

[Redacted]‘s NDIS support helps to vital intervene care pivotal development e.g., learning walk get out in safe community people around him understand unique challenges cues.

National Disability Insurance Scheme Amendment

Submission 2076 It also helps us to keep going as a family; without it, life would be intolerable. Every little aspect of caring for redacted is infinitely more challenging than what other children face, since their needs are met through the NDIS’s support system. The balance in managing both responsibilities has been maintained thanks partly due this program; even when my husband coaches his daughter’s soccer team at weekends—something he can’t do while taking care of me—he relies heavily upon having someone else assist during these times so we ensure \( redacted ) is cared and able safely come along. In general our NDIS funding seems diminishing every year, as \( ext{\( redacted )}\) grows bigger/heavier/stronger making caregiving increasingly difficult. I strongly urge you reconsider any broad cuts that will increase burden on families like ours genuinely high-needs kids like \(( redacted )).\nYours sincerely,\nFull name:\nSuburb / State: , NSW Email: Phone:\Publication preference:Please keep my name private,\nSubmission prepared with support from Cri du Chat Support Group Australia. criduchat.org.au | info@criduchat.org.au