Senate Submission

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

Template for: Parents / siblings / family of adults with Cri du Chat in SIL / supported accommodation and attending day programs 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.

Page 2

For people with Cri du Chat syndrome living in supported accommodation, the day program is not a supplement to family care. It is the only structured daytime activity available. When [name] is not at [his/her/their] day program, [he/she/they] is in [his/her/their] accommodation. There is no family member at home to provide care, stimulation, or safe supervision during those hours.

A 50% cut to the social and community participation budget will reduce the number of days [name] can attend the day program. [Describe impact — e.g., [name] would go from [X] days per week to [Y] days / the provider may not be able to sustain the service at reduced funding / [name] would spend additional days in [his/her/their] accommodation without structured activity].

The Government’s own Explanatory Memorandum acknowledges these changes ‘could likely impact on other mainstream services systems’ but provides no plan for what this means for people like [name], for whom there is no informal support alternative.

2. Provider viability and thin markets

Providers who support people with Cri du Chat syndrome in day programs operate in what the NDIS calls ‘thin markets’. They serve small numbers of high-needs participants, many of whom require 1:1 or higher staffing ratios. A 50% cut to the funding that pays for day program attendance will push many of these providers to the point where the service is no longer financially sustainable. If the provider exits, [name] loses [his/her/their] placement - and there may be no alternative provider in our area.

3. No right to challenge the cut

Proposed section 34A gives the Minister the power to make this cut by legislative instrument, with no requirement for individual assessment and no right of merits review for the participant. [Name] - through [his/her/their] support coordinator, nominee, or family - would have no mechanism to challenge the cut, even where the impact on [his/her/their] safety and wellbeing is clear and documented.

4. The Royal Commission contradiction

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability found that segregation increases risk and called for people with disability to be supported to live in the community. Day programs and individualised community access are what make community living meaningful. Cutting the funding that enables community participation for people in supported accommodation moves in the opposite direction from the Royal Commission’s recommendations.

What I am asking

Reject the proposed 50% cut to social and community participation funding and oppose the amendment to s.34A.
Ensure that people living in supported accommodation who have no informal daytime support are explicitly exempt from any blanket reduction to the social and community participation budget.

Require the Minister to conduct an individual impact assessment before any support determination takes effect on a participant’s plan.
Make all support determinations subject to merits review.
Require an assessment of provider viability before implementing cuts in thin markets

My family’s story

Please describe in your own words what [name]’s day program means for [his/her/their] life — and what it would mean for [him/her/them] to lose days of attendance. What would the alternative look like? This personal account carries weight with senators and is the most important part of your submission.

A study of Cri Du Chat adults with the same genetic defects was done in Melbourne in 2015. The outcomes of this study showed a remarkable variation in the abilities both cognitively and functional abilities. In comparison to other adults with her syndrome, A redacted is thriving. This is because she has had excellent support, resources, and I have given her everything over the past 2 decades. I am nervous about how the next transition for A redacted will go. I know that I now need to stop back however this can not happen unless there are adequate and competent supports allocated.

After the last 2 decades of prioitsing A redacted ’s well being and therapy I am burnt out and fatigued. On a day to day level, my support comes only from the NDIS services which I am grateful for. However, I also know the extent of support A redacted does require on a daily basis will only happen if her NDIS funding is maintained. I know that I need to adjust how I operate as A redacted’s Mother and primary carer to allow her to become the independent adult she would like to be.

As an independent adult A redacted will become a valued member of her community with her health and wellbeing at its full potential. The skills I have learnt in the last 23 years has provided me with the confidence to also help other mothers walking the same journey as mine. It has also given me the confidence to acknowledge that I need to continue this learning trajectory through the next decade so that A redacted’s adulthood is successful and harmonious.

Sign-off Yours sincerely,

Full name: Natalie Elder_______________________________ Suburb / State: __ Victoria______________________________ Email: __ _______________________________ Phone: ___ _______________________________________

Publication preference: I am happy for my name to be published with my submission

Submission

prepared with support from theCri duChatSupportGroupofAustralia. Youmaydeletethislineifyouprefer. criduchat.org.au|info@criduchat.org.au