Cri du Chat syndrome diagnosis, social participation funding cuts (Family or carer experience)

Submission 2486

Personal Submission

Senate Community Affairs Committee

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by: A parent carer | May 2026

Introduction

I am writing this submission as the father of my 13-year-old daughter, K, who was born with a rare genetic condition called Cri du Chat syndrome. I also have two younger children aged 10 and 7. We live in regional Victoria.

I hold strong and serious concerns about this Bill. Despite the extremely short timeframe given to provide submissions, and notwithstanding my significant caring responsibilities, I have done my best to research these proposals as thoroughly as possible, because they will affect the rest of K’s life and that of our entire family. I am grateful for the opportunity to present this submission to the Committee.

About My Daughter and Her Disability

My daughter’s disability is permanent and significant, and she is exactly the type of person the

NDIS was designed  to support. She has a severe  intellectual  disability and severe

communication delays. She uses some speech, Key Word Sign, and a speech generating device to communicate. She has low muscle tone and requires a wheelchair for long distances. She is incontinent and completely reliant on an adult for all self-care tasks. She has severe behaviours of concern and requires 1:1 support in all environments, both for her own safety and for the safety of those around her. Given the typical trajectory of people with Cri du Chat syndrome, I understand that her current level of disability and support needs are unlikely to improve as she ages.

I am sure most people in the community would assume that a person with such profound needs would not be at risk under the proposed amendments. What I have discovered, upon

reading the  Bill and Explanatory Memorandum, is that the Government  is proposing to

fundamentally change what the NDIS is - while keeping this very quiet and attempting to pass the amendments under the guise of ‘fraud reduction’ and ‘removing people with mild disabilities’. While the Bill may address those concerns in small part, the Government has not been transparent about the fact that it also significantly and dangerously reduces supports to the very people it claims to be protecting. Nor does it safely address the actual drivers of NDIS costs, which are not people with Cri du Chat syndrome and other significant permanent disabilities - their needs were always factored into the scheme’s projections - but rather the result of administrative mismanagement.

Blanket Funding Cuts to Social, Civic and Community Participation

(s34A)

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Under s34A, from 1 October 2026, K’s social, civic and community participation funding will be cut by 50%. This is a blanket cut with no consideration of individual need, and the Bill provides no right of appeal - both of which are in direct contradiction of the founding intent of the NDIS Act. K currently uses this funding to:

• Attend the local pool for exercise in a community setting. She requires 1:1 assistance in the pool and with dressing before and after. She is well known by all staff and regular patrons, and this has been part of her routine since 2022. This activity is a highlight of her week and she has a strong relationship with her support worker of six years.

• Attend social events with her friends from school - all of whom require similar support. The provider arranges age-appropriate activities that the children can enjoy together, without their parents. This is a highlight of K’s month. It is entirely age appropriate for a teenager to spend time with friends without her dad beside her. These activities build K’s individual capacity and simultaneously foster community understanding and acceptance of disability in everyday life. K’s excitement about these outings demonstrates just how important and valued they are to her, and how she is developing a growing maturity and desire for independence - as any teenage girl would.

• Bring a support worker to a close family member’s wedding. This allowed K, and our entire family, to have the best possible experience. Without her skilled and familiar support worker, I would have spent the entire event managing K’s emotions and behaviour, toileting her hourly (a process taking up to 20 minutes each time), facilitating her communication, and assisting with her balance as she tired. Instead, K was able to regulate, go outside to watch the cows in the paddock when she wanted, while I could be present in the celebration and make sure all three of my children had food, drink, and a wonderful time.

• Have a support worker present at large family gatherings at our home, extended family homes, and at restaurants. As with the wedding, this allows all of us to get the most out of these events. If K becomes overwhelmed or overstimulated, she can be supported to take a movement break, while my wife and I can prepare and serve food to our guests and make sure our other children are included and enjoying themselves.

I want to make clear to the Committee that we are not using this funding as a luxury. We use it to ensure our family’s outings are safe and beneficial to K, and that she can be genuinely included in mainstream community life, which she absolutely deserves. We also access the community regularly as a family without a support worker, and only use a support worker when we know it is necessary for K’s and others’ safety and inclusion. We are certainly not using our funding irresponsibly as s34(1)(1J) implies - and frankly, that implication is an insult to families in our circumstances.

Blanket Cuts to Therapy Funding (s34A)

Also under s34A, from 1 October 2026, K’s capacity building (therapy) budget will be reduced by 10%. This is again a blanket cut with no consideration of individually assessed need or impact.

In practice, our therapy budget is already stretched thin. We currently receive 30 hours of speech therapy funding, which translates to approximately 10 sessions per year. This is because we live in a regional area and K’s communication profile is complex, requiring a speech pathologist experienced in Augmentative and Alternative Communication (AAC). Our

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therapist is mobile and does not have an office we can attend, so her plan must also fund travel time. Of those already limited sessions, some time must be sacrificed to cover report writing fees - despite the former NDIS CEO having admitted that NDIS staff do not read these reports. A 10% cut to an already inadequate therapy budget will have real and lasting consequences.

Unaccountable Ministerial Powers: A Dangerous Trifecta

I am deeply concerned about the combined effect of three sweeping powers granted to the Minister under this Bill, with no meaningful oversight, review, or appeal mechanism:

• s34A grants the Minister the power to further reduce funding for any NDIS item at any time, without explanation and no appeal pathway. This means the Minister could, overnight, cut daily living supports - such as a support worker to assist with personal care at home - with no transition planning, no consultation, and no recourse for the family harmed.

• s33(2EA) allows the Minister to set caps on the maximum funding amount, intensity (frequency or duration), or worker-to-participant ratio for any support or class of supports. Applying this to our situation, the Minister could unilaterally reduce K’s 30 hours of speech therapy to 10 hours, regardless of her assessed need or the cost realities of regional access to specialist services.

• s45C(1) gives the Minister power to set the price caps for NDIS supports. This could mean the Minister sets the hourly rate for a 1:1 support worker at the minimum wage ($24.95), which falls below the SCHADS Award and well below the current price for a support worker in the NDIS Price Guide. Even if K had adequate support worker funding in her plan by number of hours, we would be unable to access it if providers cannot afford to work at the capped rate, and we cannot afford to make up the balance. This would force one of us to leave paid employment entirely, worsening our family’s financial position and further reducing our ability to contribute informally to K’s care.

In our household, we manage our working hours around our caring responsibilities for K. She is in high school, where there is no ‘mainstream’ out of school care program. Children her age are generally independent enough to come home from school and safely look after themselves whilst their parents work. The combined impacts of the proposed Bill are that we will have to further reduce our working hours as it does not appear the NDIS will provide enough funding, and we will then have even less money to cover the full cost of supports that the NDIS has deemed reasonable and necessary but will no longer fund.

Under this section of the Bill, the only consideration constraining the Minister is ‘safety’ - yet the cuts already announced demonstrate that this is not a meaningful safeguard. How can a Minister whose task is to meet budget targets be expected to make safe and impartial decisions about the cost of disability supports? These powers must be removed or, at minimum, subjected to robust parliamentary oversight and a genuine right of review.

The Parental Responsibility Definition: A Risk to Children with

Complex Needs (s34(1G) and s34(1H))

The Bill introduces a definition of ‘parental responsibility’ at s34(1G) and s34(1H) which appears carefully constructed to make it as easy as possible for the NDIS to deny supports to virtually any child under 18. It specifically references an expectation that parents will provide

Submission 2486

‘substantial care’ including ‘supervision, personal care, transport, emotional support and behaviour support’. With the exception of transport, these are precisely the supports that families like mine most urgently need assistance with.

I cannot think of any 13-year-old without significant disability who bites a parent’s shoulder or pulls their hair when frustrated. I do not know of any who will strike a television because a song comes on that they dislike, or who require such constant close supervision that an adult must remain within arm’s reach at all times for their own and others’ safety. K requires this level of supervision due to risks including biting, kicking, hair-pulling, choking on non-food items, and placing her hands in toilet bowls regardless of whether they are clean.

While s34(1H) does reference supports that ‘would reasonably be expected of a parent of a child of a similar age’, my reading of the provision is that this qualification applies only to s34(1H)(b), which relates to assistance with activities of daily living. My concern is that in practice, the NDIS algorithm underpinning the ICAN assessment tool will apply a maximum of, say, one hour per day for personal care tasks and nothing more - regardless of the severity of behaviours, or the intensity and age-inappropriateness of the supervision required. The NDIS will deny further support on the basis of ‘parental responsibility’, leaving families without recourse. No-one can truly understand the physical and mental toll of sustained hypervigilance until they have lived it. I can assure the Committee that if the NDIS does not provide funding for assistance with the level of behaviour, supervision and emotional support that K and other children like her require, carer burnout in Australia will skyrocket, leaving other systems overwhelmed.

Removal of Personal and Environmental Circumstances from

Funding Assessments (s9B(b))

Section  9B(b)  of  the  Bill  provides  that a  participant's  personal and  environmental

circumstances will not be taken into account when considering their functional capacity. In our situation, this poses serious consequences.

Many of K’s support requirements over the years have been a direct consequence of her

individual circumstances. K  is the oldest  of three  children, yet requires constant 1:1

supervision. When my youngest was 18 months old it was not uncommon for him to be running in one direction, my four-year-old may have simultaneously fallen and grazed his knee, and K could be running in another direction entirely. During this period, it was genuinely unsafe for me to take all three children into the community without another adult present. Not accounting for personal circumstances is dangerous, and this scenario demonstrates exactly why.

I note that an NDIS planner once attempted to challenge our decision to grow our family given our circumstances. Years later, this comment still makes my blood boil. Our family planning decisions are no-one’s business. But I note, with some irony, that the Government may one day be grateful we made the choices we did - as we have added one more adult to K’s informal support network, and the NDIS appears increasingly inclined to use the existence of family members as justification for reducing funded supports.

Financial Co-Contribution: An Unreasonable and Harmful

Expectation

The Bill appears to open the door to a co-contribution model, with s34A(5) acknowledging that NDIS funding may be ‘less than the total cost of the support’. This is deeply troubling, and appears to have been drafted without consideration of the financial realities faced by families living with disability:

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• Most families have a reduced household income because one or both parents work fewer hours due to caregiving responsibilities.

• Many families with a child with disability experience relationship breakdown due to the pressures of their circumstances, leaving single-parent households with limited financial means.

• The sole source of income for virtually all adults I know with Cri du Chat syndrome is the Disability Support Pension. They have no capacity to co-contribute.

• Parents of non-disabled adult children are not expected to fund their adult child’s life indefinitely. The same standard should apply to families of adults with disability.

To demonstrate this in reality - if the Minister were to cap the cost of wheelchairs for all participants at $2,000, K’s own wheelchair, which cost $13,000, would be completely out of reach. Electric wheelchairs can cost well over $30,000. Expecting families living with disability to cover these costs is completely unreasonable, and will result in real harm to thousands of participants who cannot access safe equipment or supports. If this is the Government’s strategy for saving money, I cannot see how it has been genuinely thought through. Legislating changes with these consequences, without meaningful consultation with affected people, is a profound failure of duty of care.

The False Assumption that Mainstream Services Can Fill the Gap

The Bill makes a significant and, in our experience, incorrect assumption that mainstream services are capable of providing equivalent care to K’s individualised NDIS supports. We have always strongly advocated for K’s inclusion in mainstream services. We acknowledge though that she still requires 1:1 support. Even when we provide that 1:1 support with either ourselves or an NDIS support worker, our experience is that the mainstream system is not yet able to fill this role.

After K missed an eagerly anticipated school camp due to illness, we sought out a holiday camp for her to attend. We contacted the organisers, explained our situation, and offered to provide her support worker - covered by NDIS funds - while we paid an additional camper fee ourselves. The camp initially refused, citing child safety concerns about having an adult on site who was not their staff, despite the worker holding both an NDIS Worker Screening Clearance and a Working with Children Check. We had to formally invoke the Disability Discrimination Act 1992 before the camp would agree to her attendance. She had a wonderful time and was completely unaware of the discrimination and heartache that had occurred just to secure her this opportunity - one that is available to all non-disabled children without question.

The benefit of that camp extended well beyond K herself. Camp management became more open to including children with disability in future. Other children on the camp developed curiosity, openness, and respect for difference that will remain with them throughout their lives. Eighteen months later, a girl from the camp spotted K in a shop and ran to hug her. Under the proposed changes, this experience would never have been possible, as untrained camp staff would not have been able to support K’s regulation in a new environment, support her in all communication interactions, toilet her hourly, and manage her behaviours of concern.

A second example: our son was enrolled in Scouts, and families were invited to attend a ceremony. We are well known in our community, largely because of K, and she is celebrated by most people who have watched her grow. The Scout families - including the leader - knew us well. Yet even in this familiar environment, at an organisation that prides itself on inclusivity, we had a troubling experience. K makes vocalisations outside of her control. During the

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ceremony she was whispering quietly - no differently to how she behaves during school assemblies, where her sounds are simply accepted. The Scout leader loudly asked her to be quiet, in front of everyone, and gave a disapproving look. This demonstrates that even where there is some awareness of disability, mainstream settings are still not ready to genuinely embrace difference.

Beyond attitudinal barriers, even the most accommodating mainstream service could not provide the 1:1 support ratio K requires, nor could an unfamiliar worker safely support her given her complex and highly individualised needs. The Bill’s presumption that mainstream services can fill the void left by NDIS cuts is misguided and will lead only to the increased

isolation  of people  with high and complex support needs,  in  direct  contrast  to the

recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

The Long-Term Impact: A Future Taken Away

As K’s father, this Bill generates more anxiety about K’s future than about our immediate circumstances. When K was born and diagnosed with Cri du Chat syndrome at three months old, one of our greatest fears was how we would support her through to our old age - both physically and financially. How would we afford therapy after Better Start funding expired? Once she grew to adulthood, how would we keep her at home with us without burning out?

Then the NDIS came, and we breathed a sigh of relief. It showed us a path forward, and

most importantly  -  it signalled that societal attitudes toward people with disability were

changing. K would live a good and valued life. Unfortunately, the Government and media narrative over the past two years has eroded much of that progress, positioning families like ours as though we are money-hungry leeches, rather than people doing everything possible to support a family member with permanent complex needs.

We planned our family’s future around the NDIS promise of stability. We live on enough land to build a granny flat, and our plan was that when K was ready as an adult, she would live there with 24/7 NDIS-funded 1:1 support - maintaining her independence while remaining close enough for us to see her daily and keep strong oversight of her care. That plan is now in jeopardy. The realistic alternatives being left to us are: care for her ourselves with minimal support until we burn out, or place her in a Supported Independent Living (SIL) home where as the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has documented - the risk of abuse, assault and neglect is very real.

The findings of that Royal Commission terrify me. I have heard too many horror stories from within our small Cri du Chat community of exactly these experiences. As K’s family, we should have the right to say no to that future for her. How can we be expected to place her in a living environment where the chances of her being physically or sexually assaulted are more likely than not - and where she has no say in who she lives with? A government in a first-world country should never put families in that position. A person’s physical safety should never be worth less than a budget target.

I will never simply be K’s dad rather than her full-time caregiver. The Bill places an expectation on me and my wife to care for her until we burn out - and we will burn out sooner rather than later without appropriate supports. Our ability to contribute meaningfully to the workforce will continue to diminish. And if community participation funding is being cut in half now, what will remain by the time K is an adult? Will there be funding to cover safe support during the day? Our friends in the Cri du Chat community who have adult children are already facing these questions as certainties - when this funding is cut, do they attend day program 2.5 days a week instead of five? What happens on the other days? The Government has not answered this. I do not believe it has even asked.

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The NDIS promised K a good life. This Bill, if passed, will take that away.

The Bill Misidentifies the Real Drivers of NDIS Costs

I would argue that this Bill fundamentally misidentifies the causes of NDIS cost growth. The real drivers are systemic and administrative, not the families and individuals with significant and permanent disabilities who rely on the scheme. We are the most invested in its financial success, because we have no choice but to rely on it to give our loved ones access to a good and ordinary life.

The NDIS price guide set prices too high from the outset - well above what people ordinarily pay for allied health services. Once the rule was introduced preventing providers from charging different rates for NDIS and non-NDIS clients, the higher rate became the standard for all. Suddenly, therapy that had previously been financially accessible to ordinary families was out of reach. Parents who needed speech pathology or occupational therapy for children with relatively mild needs were left with no option but to seek an NDIS-qualifying diagnosis. Clinicians, understanding this reality, began assigning higher-level diagnoses - such as Autism Level 2 or 3 - to children who might previously have been identified as Level 1, simply so those children could access the support they needed. I watched this change happen in real time in my own community. When K was in pre-school and the NDIS did not yet exist, she was the only child I knew receiving early intervention. By the time my sons were in pre-school and the NDIS was established, a significant portion of young children were receiving diagnoses and accessing the scheme. If I could see it, I have to ask why the Government could not.

The NDIS also makes rushed and poorly informed planning decisions. Staff do not read the reports they require, and current plans frequently fail to reflect a participant’s actual needs seemingly designed to meet a budgetary goal rather than support the individual. This drives

cost  in a  different way: people lodge  internal reviews, then external reviews  to the

Administrative Review Tribunal. The NDIS loses over 70% of these appeals, demonstrating fundamental and systemic flaws in the planning process. Government lawyers, paid by the hour, drag these matters out unnecessarily for months or years. In 2024-25, $60.7 million was paid to external law firms representing the NDIA in tribunal matters alone - an amount that has increased exponentially over the years, reflecting a worsening in planning quality. The Bill’s apparent solution to this expenditure is to simply remove the right of appeal entirely. All funding decisions would be final, regardless of the harm they cause. This is, frankly, unconscionable.

I also note that before the NDIS, a number of allied health services were accessible to families through Medicare-subsidised community health centres at very low cost - as little as $9 per session. These avenues largely disappeared as the NDIS rolled out. The scheme that was meant to improve access has, in many ways, made services less accessible for the broader community while doing little to improve genuine planning quality for those with the highest needs.

The fraud and waste in this system is real - but it lives overwhelmingly on the provider and administrative side, not among the families of people with profound and permanent disability. Blanket cuts aimed at participants are not a solution to that problem. They are an abdication of responsibility dressed up as reform.

The NDIS is Already Implementing These Changes as Though They

Are Law

Through the  disability community,  I am already witnessing firsthand that the NDIS  is

implementing changes proposed in this Bill as though they are already law - they are not. Friends with adult children are having their social, civic and community participation funding

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cut by 70%, which will then be halved again from 1 October 2026. Families are being forced

into unsustainable situations. Planners are  telling families  directly that they should be

considering SIL housing. Plans are being created not to reflect reasonable and necessary supports, but to achieve ‘financial sustainability’ targets. The NDIS needs to be reminded, firmly, that this Bill has not yet passed.

The Bill’s title - ‘Securing the NDIS for Future Generations’ - is, in my view, deeply misleading. If passed, it will actively destroy the lives of people with disability in this and future generations, and undermine the very purpose for which the scheme was created. The tagline that it ‘restores the NDIS to its original intent of supporting people with permanent and significant disability’ is an insult - it is doing the precise opposite, cutting the individually assessed supports of exactly those people while stripping away the safeguards and appeal rights that were supposed to protect them.

Closing Statement

This Bill is distressing to read. Its consequences are profound and, for many families including mine, unfathomable. A Government that is supposed to care for its most vulnerable citizens is treating them as though they are a cost burden rather than people deserving of a good life.

I ask the Committee to consider how devastating it is to have your child spoken of as a dollar figure, as a line item in a budget. There are many better ways to improve the NDIS and make it financially sustainable. This Bill, in its current form, is not one of them.

I seek that all amendments in the Bill relating to participants be removed, and that the NDIS remain consistent with its original intent as captured in s4(3) of the NDIS Act 2013: “People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.”

Thank you for your time in reading this submission. I sincerely hope it makes a difference for K, and for the many families like ours across Australia.

Regards,

Concerned parent.

Note on Publication

The author of this submission requests that their name not be published in connection with this submission. The submission may be published in de-identified form. Reference to ‘K’ is used throughout in place of the participant’s full name to protect her privacy.

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Summary of Recommendations to the Committee

Based on the concerns outlined  in  this submission,  I respectfully make the following

recommendations to the Senate Community Affairs Committee:

1. Remove s34A in its entirety. The blanket 50% cut to social, civic and community participation funding and 10% cut to capacity building (therapy) funding must be removed. Any future funding adjustments must be based on individual assessed need, involve a genuine right of internal and external review, and comply with the objects of the NDIS Act.

2. Remove or radically constrain the unilateral Ministerial powers in s34A, s33(2EA), and s45C(1). A Minister responsible for meeting budget targets must not have unchecked power to reduce the cost, intensity, or price of disability supports without independent oversight, parliamentary scrutiny, and a right of appeal. These powers as drafted are fundamentally incompatible with a rights-based disability support scheme.

3. Revise or remove the ‘parental responsibility’ provisions in s34(1G) and s34(1H). The current drafting is so broad as to allow the NDIS to deny virtually any support to a child under 18 on the basis of parental responsibility. The provisions must explicitly recognise the distinct and complex nature of caring for children with significant and permanent disabilities, and must not be applied in a manner inconsistent with Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities (CRPD).

4. Remove s9B(b) or ensure personal and environmental circumstances must be considered in all planning decisions. Removing consideration of a participant’s personal and environmental circumstances from functional capacity assessments is dangerous and will result in plans that are wholly inadequate for people with complex and contextually dependent support needs.

5. Remove any provision that enables or implies financial co-contribution by participants or their families. Families living with disability are already operating under significant financial and personal strain. A co-contribution model, whether explicit or implicit, will result in real harm, including denial of access to essential equipment and services.

6. Restore and strengthen the right of appeal for all funding decisions. The Bill’s proposal to remove or limit appeal pathways is unjust and will only increase harm to participants. The fact that the NDIA loses over 70% of ART appeals reflects a fundamental failure of planning quality, not an over-use of the appeals system. The solution is to fix planning, not to remove the rights of participants.

7. Address the real drivers of NDIS cost growth. The Committee should inquire into and address the systemic factors that have driven unsustainable cost growth, including: historical over-pricing in the NDIS price guide and its flow-on effect on private market pricing; the resulting diagnostic ‘creep’ as families sought any available pathway to supports; poor planning decision-making quality leading to excessive review and litigation costs; and the collapse of affordable community-based allied health services that previously served families outside the NDIS. The focus on participant-side fraud and waste is misplaced - the real problem is on the provider and administrative side, and the Government’s own poor choices in how it set prices and chooses to fight and lose cases it should never have taken to tribunal.

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8. Ensure the NDIS ceases implementing the Bill’s changes prior to Royal Assent. The Committee should note evidence that the NDIS is already applying proposed changes - including funding cuts and pressure toward SIL housing - as though they are law. This must stop immediately. Participants must be protected from being harmed by provisions that have not yet passed.

9. Conduct genuine, extended consultation with people with significant disability and their families. The extremely short timeframe for submissions to this inquiry is itself indicative of a lack of genuine engagement with the people most affected. The Committee should recommend that no further amendments to participant supports proceed without extended, accessible, and meaningful consultation with the disability community, including people with complex and permanent support needs and their families.