Submission 2076

Senate submission

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

Template for: Parents / carers of young children withCri duChat (aged 0–10) Submissions due: Friday 29 May 2026

About our family

• I am the parent of , who is 9 years old and lives in , NSW (with a 10 year old brother and 6 year old sister). has Cri du Chat syndrome, a rare genetic condition caused by a deletion on chromosome 5 that is present from birth and permanent, and in ’s case is the cause of very significant physical and mental developmental delays, e.g. he is nonverbal, wears nappies, needs to be fed, clothed, cleaned, etc similar to a 1 year old. is an NDIS participant. His current plan supports him primarily with speech therapy, OT, community access and support workers. These supports are not optional extras. They are what make it possible for him to develop, to be safe, and to be part of our community.

Why I am concerned about this Bill

I am writing to oppose several provisions of the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 that would significantly harm my child and our family. I urge the Committee to recommend amendments before this Bill is passed.

The 50% cut to social and community participation funding

The Bill proposes a 50% cut to social and community participation funding from 1 October 2026. This is the funding that supports to access the community safely. Children withCri duChat syndrome cannot safely access the community without a trained, familiar support worker. This is not a preference — it is a safety reality. currently is assisted by a support worker to get to a local pool and the occasional park each week (though we would like additional funding to help him access the community more than this). So halving this funding would mean his ability to access the community safely is significantly reduced and he’d have less of a connection with the community. There is no cheaper alternative. Community programs that do not include individually funded support workers cannot safely support a child with ’s level of need.

The 10% cut to therapy funding

The Bill also proposes a 10% reduction to the capacity building budget used for therapy, including speech therapy, occupational therapy, and physiotherapy. For young children with Cri du Chat syndrome, therapy is not optional — it is how development happens. Early intervention is critical and has the greatest impact on long-term outcomes. is currently receiving weekly OT and occasional speech therapy. Even a 10% reduction will inevitable mean he loses some of these sessions and negatively impact his development. Children with complex, lifelong conditions should not be subject to blanket budget reductions. Their therapy needs are clinically established and individually assessed.

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’s roughly 10x as intensive as parenting for our other 6 and 10 year old children. On a typical day, like today, woke early, trashed his room (pulled out all his drawers, turned everything upside down, broke a drawer, scattered soft toys all over his room, removed his sleep suit, pants and nappy, etc, so we have to clean all that up before we slowly feed him his soft diet, prepare special food for him, wrestle him away from smashing the TV and other items around the home, and then he goes to school as it’s Monday. After school he needs 1-on-1 care, feeding, monitoring, etc to prevent him hurting himself and others (e.g. he bangs his head violently on hard surfaces, pulls others’ hair, scratches people to get their attention). My husband and I already provide the vast majority of his care. We cannot provide more without compromising our health, our work, and our ability to care for our other children. The NDIS was designed to provide what families cannot and children like with a permanent severe disability should be the priority of the program.

Eligibility and early intervention

Cri du Chat syndrome is a genetically confirmed, lifelong condition. Early intervention is critical from the earliest months of life. Children with this condition may not yet be showing measurable ‘reduced functional capacity’ in infancy, but the need for early intervention is clinically well established and should not depend on whether a baby can demonstrate functional limitations at birth. A reassessment process based on functional capacity rather than diagnosis that does not account for the well-documented profile of Cri du Chat syndrome risks denying early intervention to children who need it most, at the time when it has the greatest impact.

What I am asking

I am asking the Committee to recommend the following amendments to the Bill:

• Remove or substantially amend proposed section 34A to prevent blanket category- type funding cuts without individual assessment.
• Ensure social and community participation cuts do not apply to children who rely on 1:1 funded support to access the community safely.
• Reverse the 10% therapy funding cut for children in active early intervention.
• Retain automatic access for children with diagnosed genetic conditions such as Cri du Chat syndrome, and protect early intervention funding for infants.
• Revise the parental responsibility provisions to require consideration of the specialist nature of care and the impact on the whole family.

My family’s story

’s NDIS support helps to provide vital intervention and care that has been pivotal in his development, e.g. learning to walk and get out in the community safely, with people around him that understand his unique challenges and cues.

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 it is for our other children, and the support provided by the NDIS allows us (just) to keep some level of balance around our family life. For example, I work Saturdays at the moment when my husband needs to coach our daughter’s soccer team, and it’s simply impossible for him to do this and care for redacted, so we need a support worker at these times to ensure redacted is cared for and able to safely come along.

In general, our NDIS funding seems to diminish every year, and as redacted gets bigger / heavier / stronger, it gets harder and harder to care for him. I strongly urge you to reconsider any broadbrush cuts to support that will increase the burden on families like ours genuinely high-needs kids like redacted.

Yours sincerely,

Full name: Suburb / State: , NSW Email: Phone:

Publication preference: Please keep my name private

Submission prepared with support from the Cri du Chat Support Group of Australia. criduchat.org.au | info@criduchat.org.au