Submission 2038

Senate submission

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

Template for: Parents / carers of teenagers withCri duChat(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 is protected by parliamentary privilege Under the Parliamentary Privileges Act 1987(Cth), any submission you make to this Senate inquiry is a ‘proceeding in parliament’. This means your submission is protected by parliamentary privilege—the same protection that applies to what senators say in the chamber. In practice, this means: -You cannot be sued for defamation for anything you write in your submission—even if you describe your family’s experience of the NDIA in frank or critical terms. -It is a criminal offence under federal law for anyone—including your employer, a service provider, or the NDIA itself—to penalise you, threaten you, or treat you less favourably because you made a submission. Write honestly. Tell your story in your own words. The law protects you.

About our family

I am the mother of , a 14-year-old boy with complex needs who has a primary diagnosis ofCri DuChat syndrome, complex epilepsy, and Level3 Autism. He lives with me, his dad, alongside his younger sister in , Queensland. has been an NDIS participant since Nov2018, after previously accessing the state-based early intervention scheme and Better Start funding. His current NDIS plan provides essential support through therapies including speech, OT and behaviour supports, as well as support workers for daily living and social and community participation. These supports are critical to ’s development, safety and wellbeing.

Why I am concerned about this Bill

The NDIS Amendment (Securing the NDIS for Future Generations)Bill 2026 proposes changes that would cause real harm to and our family. I am writing to ask the Committee to recommend amendments.

1. The50% cut to social and community participation funding — loss of independence-building

For children and teenagers with Cri du Chat syndrome, social and community participationfunding is not just about leisure. It supports the gradual, supported development ofindependence, social connection, and a life outside the family home—exactly whatteenagers without disability experience naturally.

Submission 2038

Currently, this funding supports to participate in activities that are critical to his development, wellbeing, and long-term capacity building. For example, is able to participate in a routine based outing with a support worker about 2-3 afternoons a week to improve social confidence, emotional regulation and practice communication in a real world setting. This supports strengthen life skills appropriate for adolescence and help transition into adulthood.

A 50% cut would mean reduced access to community-based programs and supports, social isolation and regression in independence and social development. This would impact with increased anxiety, behavioural challenges and emotional distress. Additionally, we as parents would need to reduce our working hours to provide supervision with the proposed 50% cuts.

There are no alternatives available in our community that provide the 1:1 trained support that requires. This funding is what makes inclusion possible.

The 10% cut to therapy funding

The Bill proposes a 10% reduction to capacity building therapy funding, covering speech therapy, occupational therapy, physiotherapy, and behaviour support. For children and teensagers with Cri du Chat syndrome, therapy is not a phase that ends — it is an ongoing part of managing a lifelong condition. Communication support, behavioural regulation, and physical management require consistent, skilled intervention across the teenage years and into adulthood. currently receives fortnightly speech & OT therapy and on average 6 weekly behaviour support. A 10% reduction would mean, we would lose one session per month / we would have to choose between speech therapy and OT / progress made over years could be lost without consistent support.

At a time when is approaching the transition to adulthood - already a high-risk period - any reduction in therapy funding sends the wrong signal and creates real risk.

Transition to adulthood and planning uncertainty

     is approaching the transition to adulthood, which is already a stressful and uncertain

time for our family. The proposed changes - including the shift to functional capacity reassessments and the broadened parental responsibility provisions - create serious uncertainty about what funding will be available during and after that transition. The expectation that parents will continue to provide ‘substantial care’ into adulthood does not reflect the reality that families need NDIS support to plan for a future where adult children can live with dignity and appropriate independence.

Restricted access to plan reviews

The Bill proposes to make it harder to request an unscheduled review, extending the response time and narrowing the grounds. For a teenager in active development, circumstances change. Transitioning between school years, support workers, or services can significantly affect what is needed. Removing the right to seek a timely review in response to those changes is not an efficiency measure — it is a denial of a basic right to have a correct plan.

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 him a very medically and behaviourally complex child. Although he’s 14 years old, he has significant learning difficulties, delayed gross and fine motor skills, is non-verbal, and requires constant supervision and support as he has no understanding of safety or personal boundaries.

Despite these challenges, is a happy, curious, and a loving child who thrives with routine, community access, and supported activities that help him build confidence, social awareness, and independence.

A good day for him is being able to safely participate in the community, engage with others and enjoy meaningful activities with the right supports around him. NDIS funding is essential to making this possible. If this funding was cut, would lose many opportunities that will help him grow and participate in everyday life, which then will lead to increased anxiety, behavioural challenges, and a significant impact on his wellbeing and our family’s ability to support him safely.

In summary, continued access to appropriate NDIS support is critical and vital to ensure can live with dignity, inclusivity, safely, and most importantly the best quality of life possible.

Sign-off

Yours sincerely,

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

Publication preference: Please keep my name private (circle one)