Cri du Chat families experience challenges with NDIS reform (Family or carer experience)

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

Inquiry into the

National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Cri du Chat Support Group of Australia

Information | Friendship | Support

criduchat.org.au  | info@criduchat.org.au

May 2026 Bill reference: r7487 — National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

1. Preliminary objection: the two-week inquiry window is unacceptable

The Cri du Chat Support Group of Australia (the Group) begins this submission by formally objecting to the two-week timeframe provided for submissions to this inquiry. This objection is not merely procedural. It goes directly to the substance of our concerns about this Bill.

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026 was introduced to Parliament on 14 May 2026. It proposes the most far-reaching restructuring of the NDIS since the scheme’s establishment. It will affect every high-needs participant in the scheme for the rest of their lives. Two weeks is not enough time for our families, who are already managing 24-hour care responsibilities, to read, understand, and respond to legislation of this consequence.

A two-week window compounds an existing power imbalance in NDIS policy: the people most harmed by poorly designed reform are least able to respond at short notice. Our members with significant and complex communication support needs cannot participate at all without accessible formats and extended time. We are a small peer organisation run entirely by parent volunteers. We do not have legal resources or policy teams. We have done our best to prepare this submission, but we want the Committee to understand that this timeframe has prevented many of our individual members from submitting in their own right and that this document represents voices that could not be heard within a fortnight.

We note this may also constitute a systemic access barrier under the Disability Discrimination Act 1992 (Cth), which prohibits indirect discrimination in the administration of government programs. We also note that the Down Syndrome Australia Disability Representative Organisation Consortium, of which we are a member, has joined other Disability Representative Organisations in calling this consultation timeframe wholly inadequate and in calling for a robust Senate inquiry process.

We call on the Committee to formally record its concern about the timeframe, accept late submissions from disability communities who cannot meet the window, and recommend that future NDIS legislation carry a minimum six-week submission period with supported and accessible submission processes.

RECOMMENDATION 1. The Committee should formally record its concern about the two-week submission timeframe.

2. The Committee should accept late submissions from disability communities who could not meet the window.

3. The Committee should recommend that future NDIS legislation carry a minimum six-week submission period with supported and accessible submission processes.

4. About the Cri du Chat Support Group of Australia We are the Cri du Chat Support Group of Australia, a national peer organisation voluntarily run by and for families of people living with Cri du Chat syndrome (also known as 5p–

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

syndrome). We support individuals with the condition, their families and carers across Australia. We are a member of the Down Syndrome Australia Disability Representative Organisation (DRO) Consortium.

Cri du Chat syndrome is caused by a partial deletion of the short arm of chromosome 5. It is present from birth, genetically confirmed, and permanent. There is no cure and no treatment that changes the underlying condition. Our members live with this every day, and so do we as their families. The clinical profile of Cri du Chat syndrome is well established in peer-reviewed literature and includes:

 Intellectual disability, ranging from moderate to profound

• Speech and language delay. Most of our members require the ongoing support of a trained communication partner, and many use AAC systems, Key Word Sign, gestures, or a combination of these alongside or instead of speech

• Hypotonia, also known as low muscle tone. This impacts gross and fine motor development, balance, physical endurance, and mobility, with a proportion of our members being full-time or part-time wheelchair users or requiring other mobility aids and physical support

• Severe behaviours of concern including self-injurious behaviour, behaviours that may harm others, hyperactivity, repetitive behaviours, and emotional dysregulation

• Anxiety and obsessive-compulsive features, which interact with communication impairment and intellectual disability to generate behavioural escalation and require specialist clinical management

• Feeding and swallowing disorders requiring specialist mealtime management

• Gastrointestinal and bowel management issues across the lifespan, including chronic constipation, gastro-oesophageal reflux, and other digestive complications, which require ongoing skilled care and which can contribute to behavioural escalation when unmanaged

• Double incontinence and bowel management challenges are a consistent feature across the lifespan, requiring ongoing skilled management as part of daily personal care

• Sensory processing differences and hypersensitivity

• Lifelong, 24-hour active supervision and support needs Our 2025 Family Insights Survey of 29 respondents – representing one third of our membership base of 89 people with Cri du Chat syndrome across Australia, with ages ranging from 1 to 64 years – confirms this profile in lived experience. Communication and mobility challenges were universal across the lifetime (100%), with behaviour (90%), incontinence (90%), and sensory needs (90%) also near-universal. 50% use Key Word Sign or Auslan, 25% use dedicated AAC devices, and 46% rely substantially on body language. These are not mild or episodic needs. They are constant, complex, and lifelong.

We want to be clear about what this means in practice, because we believe it is not well understood by those who designed this legislation. Our members, whether children or adults, require support not only with personal care in the home but with every activity they undertake outside it. Personal care includes, for a large proportion of our members, assistance with continence management, mobility support, and physical assistance with

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

daily activities arising from hypotonia. Whether attending childcare, school, a structured day programme, an individualised community activity, or accessing therapy, our members require the support of a trained and skilled support person who is aware of their personal care needs, their communication approach, their mobility requirements, and their behavioural support needs, and present at adequate staffing ratios. An untrained or unfamiliar worker, or a generic community programme, cannot safely substitute for this. It is not a preference. It is a necessity.

We also note that whilst there is some variability across our membership, our entire community, without exception, requires support that simply cannot be accessed outside the NDIS. We return to this when discussing the proposed assessment changes.

Our members are not on the margins of the NDIS. They are precisely the people it was designed for. Their needs were factored into the scheme’s actuarial modelling from its inception. They are not the cause of the scheme’s cost pressures. Those pressures arose from the expansion of the scheme beyond its original intended cohort, and from mismanagement of the NDIA itself. The solution to that growth cannot be to cut supports from some of the country’s most disabled people who were always meant to be there. That is not acceptable, and it is not what the NDIS was supposed to be.

CORE CONCERN The Government frames these reforms as a return to the NDIS’s original intent. Our members are the original intent. Cutting their supports is not a return to anything. It is a step backwards for the people the scheme was built to protect.

3. What this Bill gets wrong 3.1 The problem is not our members

We do not dispute that the NDIS has a financial sustainability challenge. What we strongly dispute is the Government’s diagnosis of where that challenge came from and, consequently, its choice of remedy. The scheme’s cost pressures have not been driven by our members, by other participants with high-level lifelong disability, or by the cohort the scheme was originally designed to support. They have been caused by a combination of factors:

• Expansion of the scheme well beyond its intended cohort, including many participants with mild-to-moderate developmental conditions for whom mainstream services were allowed to atrophy

• Provider fraud and exploitation that the Government has acknowledged but never adequately addressed

• Chronic mismanagement within the NDIA itself, creating costs through delay, inconsistency, and poor decision-making rather than through participant need

• A plan review system so broken and inconsistent that it generates enormous downstream costs in appeals, legal fees, and administrative re-work

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

The Minister has acknowledged in an interview with The Saturday Paper that fraud is not the primary source of the savings this Bill is expected to generate. The savings come directly from cuts to participant plan budgets. This is a fundamental breach of the guarantee in section 4(3) of the Act that people with disability and their families should have certainty that people with disability will receive the care and support they need over their lifetime. The Bill does not address the causes of cost pressure. It transfers that cost onto the people least able to bear it.

We want to be clear with the Committee about our position on financial sustainability. No community has a greater interest in a sustainable NDIS than ours. Our members will need substantial support for the rest of their lives. We need the scheme to be there in twenty, thirty, and forty years’ time. We are not opposed to financial sustainability. We are opposed to the approach this Bill takes to it.

The Bill nowhere defines what financial sustainability means. It does not set a target, a benchmark, or a measurable threshold. It does not identify what level of expenditure would constitute success. What it does is hand the Minister broad powers to cut supports, indiscriminately, across the entire participant population, without considering the impact those cuts will have on the people who depend on them. Cutting essential supports from society’s most disabled people, in the name of an undefined financial sustainability objective, while refusing to address the underlying cost drivers we set out above, is not a sustainability strategy. It is a cost-shifting exercise dressed up as reform. The costs do not disappear. They transfer to families, to the health system, to Centrelink, and to the mental health and crisis services that will be required to respond when this Bill’s effects begin to land. We address that cost transfer in detail in section 5.2.

We are also concerned that this Bill is oriented almost entirely around financial sustainability. The rights of people with disability, including the right to independence, community participation, choice and control, an adequate standard of living, and to have grievances heard, do not receive equivalent weight. Safety is mentioned in limited contexts. Rights are not given the same treatment. A scheme that funds less than a person’s reasonable and necessary supports, prevents timely review, and replaces human judgement with automated processes is not a scheme that protects rights. It is one that subordinates rights to budget targets.

RECOMMENDATION 1. The Government must publicly define what ‘financial sustainability’ means for the NDIS, including measurable targets, benchmarks, and milestones, before any provisions of this Bill take effect.

2. The Government must publish, and act on, a credible plan to address the underlying drivers of NDIS cost growth (the expansion of the scheme beyond its original cohort, provider fraud, and NDIA mismanagement) before any participant supports are reduced.

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

3.2 The public case being made for this Bill does not match its actual effects

The Government has consistently framed these reforms in the media as being about removing people from the NDIS who should never have been on it, addressing fraud, and stopping ‘rorting.’ We understand why this framing is politically convenient. We submit that it does not reflect what the Bill actually does to communities like ours, and we do not believe it would survive scrutiny if the consequences for people with Cri du Chat syndrome and similar permanent, lifelong disability were properly explained to the public.

People with Cri du Chat syndrome are not people who ‘should never have been on’ the NDIS. We are exactly the people the NDIS was designed for. But the proposed changes, including the 50 per cent cut to social, civic and community participation budgets and the tightening of eligibility and support criteria, will affect us. The Bill does not distinguish between us and the people the Government says it is targeting. It applies its cuts and restrictions across the board.

The Down Syndrome Australia DRO Consortium has highlighted that the proposed cuts to social and community participation are dangerous and do not consider how participants currently use this funding, including to visit the doctor, get to work, build relationships, and live with dignity in their community. We share that concern entirely and align our submission with the broader concerns of the DRO Consortium on the Bill’s most harmful provisions.

PUBLIC INTEREST The Bill is titled the National Disability Insurance Scheme

CONCERN Amendment (Securing the NDIS for Future Generations) Bill

2026. For people with Cri du Chat syndrome, the future this Bill creates is one of reduced community participation, increased isolation, greater reliance on exhausted family carers, and the real risk of a return to segregated and institutional living arrangements for those whose families can no longer cope. That is not a secure future for our community. It is the opposite.

3.3 The Royal Commission into Violence, Abuse, Neglect and

Exploitation of People with Disability

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with

Disability ran from 2019 to 2023, hearing from close to 10,000 people across 32 public hearings and 1,785 private sessions. Its Final Report, tabled in the Australian Parliament on 29 September 2023, made 222 recommendations for change. It is one of the most significant inquiries into the lives of disabled Australians ever conducted. Its findings are directly and urgently relevant to this Bill.

The Royal Commission found that people with disability in Australia experience violence, abuse, neglect, and exploitation at much higher rates than people without disability. It found that segregated settings, including group homes and institutional living arrangements, increase the risk of violence, abuse, neglect, and exploitation. It found that the root cause of much of this harm is that many people with disability are segregated from the rest of society,

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

denied choice and control over their daily lives, and left without meaningful community inclusion, social networks, or independent advocacy. All Commissioners agreed that reforms are required to ensure that no one is forced to participate in settings designed exclusively for people with disability. The Commission estimated the annual cost of violence, abuse, neglect, and exploitation of Australians with disability to be $46 billion.

The progress our community has made since the NDIS began is real and profound. We have seen our members move from lives with minimal community contact to genuinely inclusive community lives, with jobs, friendships, community participation, and meaningful engagement in the world around them. We have seen our children grow up in a world that includes them, where they attend school with their siblings and neighbours, access therapy that develops their skills and communication, and participate in community activities alongside everyone else. This is what a properly funded, individually tailored NDIS makes possible.

This Bill risks undoing all of that progress. The combination of a 50 per cent cut to community participation funding, increased reliance on informal supports, restricted access to plan reviews, and the creation of conditions that push families toward crisis-driven residential placement is not a forward direction. It is a return to the segregated, isolated existence that the Royal Commission documented as inherently dangerous and fundamentally inconsistent with human dignity and rights. We cannot go back there. The Royal Commission showed us why.

THE FUNDAMENTAL The Royal Commission found that segregation increases risk of CONTRADICTION harm and called for people with disability to live in the community with individually funded support. This Bill cuts the funding that makes community living possible, reduces the individual assessment that makes support appropriate, increases reliance on informal and family care, and creates the conditions in which people with Cri du Chat syndrome will be pushed toward the very group home and institutional settings the Royal Commission identified as high-risk. The Government cannot simultaneously claim to be implementing the Royal Commission’s vision and pass this Bill. They are in direct contradiction.

3.4 The plan review system must be fixed before it is further restricted

Before the Committee considers legislation that restricts the ability of participants to seek plan reviews, it must understand what is actually happening on the ground. Our members’ experiences of the NDIA’s plan review processes are chaotic, inconsistent, and unsafe. The following patterns are not exceptional cases. They are regular experiences within our community:

LIVED EXPERIENCE A family is told by the NDIA not to gather updated clinical reports as the current plan will be extended. Four months into the extended plan a new plan is developed with significantly

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

reduced funding, without consultation or an opportunity to provide any evidence before the decision was made.

LIVED EXPERIENCE A family is asked to urgently provide specialist reports within a few weeks for an imminent review. They go to the effort of gathering them. The review then does not happen for eleven months. By that point the reports and recommendations within are outdated, and the subsequent plan is not reflective of current support needs.

LIVED EXPERIENCE A plan runs on extension for five years with no formal review. When a major life transition approaches and the family requests a change of circumstances review to ensure supports are in place, there is no clear pathway, no confirmed timeline, and no certainty the review will happen before the transition does.

LIVED EXPERIENCE A family receives a brief, unscheduled phone call from the Agency asking how things are going. No advance notice, no structured questions, no opportunity to provide supporting information. A new plan arrives shortly after with significant changes to funding. The family is unaware that the ‘check-in’ phone call was actually a plan review.

These are not aberrations. They are the system working as it currently works: chaotically, without consistent rules, without clear timelines, and without any meaningful participant safeguards.

Our 2025 Family Insights Survey found that 50 per cent of Australian respondents identified plan reviews as a key challenge with the NDIS – the third most commonly reported challenge overall. Sixty-nine per cent reported NDIA staff and partners lacked disability knowledge, and 65 per cent identified a lack of understanding of rare or complex conditions. Forty-six per cent had experienced funding inconsistencies or cuts. Forty-eight per cent said the NDIS caused them worry or anxiety often or always. One in three respondents had already lodged a section 100 internal review. The human cost is clear from our members’ own words. One respondent called for “a department mindset that is not ‘everyone can just review’ – rather a commitment to getting plans right the first time. Understanding that their own policies and costing frameworks are the cause of the cost blow-out, not families.” Another described dealing with the NDIA as having left them feeling “as though I have PTSD.” These are not people who want to be in an adversarial relationship with their planner. They are people trapped in a system that makes adversarialism the only way to survive.

We are also deeply concerned that many of the proposed amendments are already being seen in practice across our membership and across the broader disability community,

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

without the legislation having been amended. Currently, every family in our community that has undergone plan reassessment has experienced significant funding cuts, despite presenting strong evidence of need. This is not returning the scheme to its original intent. It is cost cutting under a more politically viable name.

We are particularly concerned about social, civic and community participation budgets specifically. We are already seeing consistent reductions of approximately 50 per cent to social, civic and community participation budgets in reassessments occurring right now, before the legislation has taken effect. We want the Committee to be aware of this, and we call on the Government to provide an explicit assurance, enforceable in legislation, that families who have already had their social, civic and community participation budgets halved in a recent reassessment will not be subject to the further blanket 50 per cent determination when it takes effect from 1 October 2026. Double penalising families who have already been subjected to these reductions would be deeply unjust and must be explicitly prevented.

KEY CONCERN The Bill proposes to restrict the circumstances in which participants can seek an unscheduled plan review. It is not legally or ethically acceptable to restrict participant rights to seek review in a system where the NDIA itself does not follow clear, consistent, or published rules about when and how reviews occur. You cannot take away people’s ability to seek redress without first fixing the broken system they need redress from.

3.5 Reducing funding does not stop fraud

The Government has repeatedly cited provider fraud and non-compliance as a key driver of scheme growth. We agree that fraud is a serious problem, however we disagree that it is a problem to the extent claimed by the government. The correct response is to strengthen fraud detection, enforcement, mandatory registration, claims auditing, and provider accountability. We support stronger provider oversight, mandatory registration, and claims auditing.

Cutting a participant’s community participation budget by 50 per cent does not prevent a fraudulent provider from claiming against what remains. It simply means the participant has less support. Reducing overall funding so that providers have less to steal is not a fraud prevention strategy. It is a harm-shifting strategy that transfers the cost of administrative failure onto disabled people and their families.

4. The proposed amendments and what they will mean for our community

The Bill does not propose one or two changes that can be examined in isolation. It proposes a suite of interlocking amendments that, when read together, point toward a fundamentally different scheme from the one that exists now and from the one our members were promised. We have read the Bill carefully. We have read the Explanatory Memorandum.

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

What we see, when we look at all the pieces together, is a scheme being redesigned around the question of how little can be funded, rather than around the question of how much support a person genuinely needs to live a safe and meaningful life.

This section sets out our analysis of the proposed amendments. We have structured it not as a list of discrete concerns but as an account of how these changes work together, because that is what we believe the Committee needs to understand. Each individual amendment might be defended in isolation. Taken together, they describe a future for our members that frightens us deeply.

Throughout this section, blue boxes quote from the Bill or its Explanatory Memorandum. Green boxes quote the current Act. The contrast between the two is, in many cases, the most important thing we can show the Committee.

4.1 How these changes fit together: the picture we see

The Act, as it currently stands, was built on a clear set of commitments. It promised that people with permanent and significant disability would receive individually assessed, reasonable and necessary supports. It promised lifetime certainty of care. It gave people with disability the same right as anyone else to pursue a grievance. It required the scheme to support independence and social and economic participation. These are not aspirational statements. They are the legal foundation of the NDIS.

s 4(3) 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.

Section 4(3) is not a peripheral provision. It is the promise on which our families built their planning for the rest of our members’ lives. When the NDIS was established, families were told that their loved ones with permanent and significant disability would have certainty of support over their lifetime. Our community planned around that promise. We made decisions about housing, employment, care arrangements, and long-term financial planning on the basis that the supports our members need would be there. The Bill takes that certainty away. Under proposed section 34A, the Minister can cut a support category by any percentage at any time, with no minimum notice period before the cut takes effect on an existing plan, no individual review, and no requirement to consult the affected community. A family whose adult son lives in his own home with 2:1 supports built around a stable plan can wake up one morning to find that the next legislative instrument has rendered that arrangement financially unworkable. There is no longer any planning horizon for our community. There is only the next determination.

s 4(7) NDIS Act 2013 People with disability have the same right as other members of Australian society to pursue any grievance.

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

s 4(11) NDIS Act 2013 Reasonable and necessary supports for people with disability should: (a) support people with disability to pursue their goals and maximise their independence; and (b) support people with disability to live independently and to be included in the community as fully participating citizens…

What the Bill proposes, when read as a whole, is a systematic dismantling of each of these commitments. Here is what we see:

• The Minister gains power to cut entire support categories by a set percentage across all participants simultaneously, with no individual assessment, no right of review, and no floor (proposed section 34A). This removes the certainty of section 4(3) and the individual assessment basis of section 34(1).

• Functional capacity is redefined to be assessed without reference to a person’s personal circumstances (proposed section 9B). This removes the ability of the scheme to respond to the real safety risks in our members’ actual lives.

• Supports must now arise ‘directly from’ an eligible impairment (amended paragraph 34(1)(aa)). This narrows the definition of fundable need in ways that will exclude the well-documented flow-on effects of complex disability.

• The grounds for requesting an unscheduled plan review are dramatically narrowed, the response time extended from 21 to 90 days, and the right to request a review on the basis of a change in circumstances relating to informal support networks is removed (proposed section 48A). This removes the practical ability to seek correction when plans are wrong.

• A presumption that parents are responsible for substantial care is legislated, and a preference for informal and community supports over funded professional support is embedded as a principle the CEO must follow (proposed subsections 34(1G), (1H), (1J) and (1K)). This creates a framework in which family care is assumed to be available and preferred, regardless of whether it is appropriate, safe, or sustainable.

• Pricing is transferred from an independent body to direct Ministerial control (Schedule 3), giving a Minister with budget targets the power to set support prices, including for the thin-market specialist supports our members depend on.

• Automated computer programs may make or contribute to administrative decisions affecting participant funding, including evaluative decisions (proposed section 59B). This introduces non-human decision-making for decisions that profoundly affect people’s lives.

• New sustainability principles require the CEO to have regard to financial sustainability in performing all planning functions (proposed section 17B). Financial sustainability is no longer a constraint on how the scheme operates. It becomes a purpose that the CEO must actively pursue in every planning decision.

WHAT WE SEE A scheme in which a Minister can cut support categories without limit or review; in which family care is assumed to be available; in which personal circumstances are excluded from assessment; in which automated systems make funding decisions; in which the ability to challenge wrong decisions has been systematically narrowed; and in which financial sustainability is built into every planning decision as an

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

overriding principle. This is not the NDIS. This is something else entirely.

4.2 The Minister’s power to cut support categories: an unlimited and unreviewable instrument (proposed section 34A)

What the current Act requires The Act requires that every support funded under a participant’s plan be individually assessed as reasonable and necessary. Section 34(1) sets out the criteria: the support must address the participant’s needs arising from their impairment, assist them to pursue their goals and facilitate their social and economic participation, represent value for money, and be effective and beneficial for the participant. This is an individual assessment. It cannot be done by applying a percentage to a category.

s 34(1) NDIS Act 2013 The CEO must be satisfied of all the following before including a support in a participant’s plan: (a) the support is most appropriately funded or provided through the National Disability Insurance Scheme… (aa) the support is necessary to address the needs of the participant arising from an impairment…

What the Bill inserts

Proposed s 34A(1) For the purposes of ensuring the financial sustainability of the National Disability Insurance Scheme, the Minister may, by legislative instrument, determine: (a) a percentage (lower than 100%) that is the percentage by which a funding component amount for a specified group of supports is reduced while the determination is in force…

Proposed s 34A(3) In making the determination, the Minister must have regard to the safety of participants.

Proposed s 34A(5) To avoid doubt, the determination has effect even if the result is either or both of the following: (a) the funding provided under a participant’s plan for a reasonable and necessary support is less than the total cost of the support; (b) the funding provided under a participant’s plan for all reasonable and necessary supports funded under the plan taken as a whole is less than the total costs of the supports.

Our analysis This provision gives the Minister the power to reduce any category of support across all participants by any percentage, without any individual assessment, without any right of

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

merits review, and without any floor below which the cut cannot go. The only protection is that the Minister must think about participant safety. Safety is not defined. There is no threshold. There is no requirement to conduct an impact assessment. There is no obligation to consult the disability community. And because the determination takes effect through operation of law rather than by altering the text of plans, participants cannot even point to a document that says their support has been reduced. Their plan will still say the same thing. The money simply will not be there.

We want to be explicit about what this means. The absence of a definition of ‘safety’ in proposed section 34A is not a drafting oversight. It is a structural safeguarding failure. The very first proposed determination under this power, the 50 per cent cut to social, civic and community participation budgets, demonstrates a lack of understanding of what safety means for people with high and complex support needs. Safety is not a passive concept. It is the trained support worker who prevents a person with self-injurious behaviour from harming themselves in a public setting. It is the 1:1 supervision of a child with choking risks at a community event. It is the consistent support relationship that makes behavioural escalation less likely. The Government has not engaged with the lived experience of our community in framing this provision. The Bill cannot be allowed to proceed with an undefined safeguard that has already shown itself to be insufficient.

The Minister has announced the immediate use of this power to cut social, civic and community participation budgets by 50 per cent and capacity building daily activity budgets by 10 per cent from 1 October 2026. We note also that the sunsetting provisions that would ordinarily require a legislative instrument to be re-made after ten years have been explicitly disapplied (proposed section 34A, Note). This determination can remain in force indefinitely, with no mechanism requiring it to be reviewed, revisited, or renewed.

We are also deeply concerned about what comes next. If a 50 per cent social, civic and community participation cut and a 10 per cent capacity building daily activity cut do not achieve the Government’s financial sustainability targets, there is nothing in the Bill preventing further determinations. The Minister could cut these categories further, or apply the same mechanism to any other support category: core supports, assistive technology, Supported Independent Living. There is no limit. There is no parliamentary vote required, no independent check, and no minimum notice period before a determination takes effect on an existing plan.

What a 50 per cent social, civic and community participation cut means for our members, and why there is no alternative We want to be direct with the Committee about what this cut will actually mean, because we believe the Government has not fully considered its impact on people with the level of need our members have.

A significant proportion of our adult members attend structured day programmes. Others access the community through individualised one-to-one activities funded from social, civic and community participation budgets, and some attend open employment with a funded support worker. In every case, the support is not a discretionary addition to a good life. It is

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

the mechanism that makes community participation possible at all. For a person with Cri du Chat syndrome, community participation requires a trained, familiar support worker present. The physical demands of supporting a person with hypotonia, who may use a wheelchair or require mobility assistance, combined with the communication and behavioural support needs specific to each individual, mean this is skilled work that cannot be done by an untrained person or in a generic setting without individual support.

• When social, civic and community participation funding is cut by 50 per cent, our members do not find a cheaper alternative. They stay home, because there is no cheaper alternative. The Government’s $200 million Inclusive Communities Fund provides funding for community organisations to host activities. It does not provide funding for the trained, individually allocated support worker without whom our members cannot safely attend those activities. These are not substitutes for each other. And when our members stay home, someone has to be there with them. That someone is a parent. Our parents work. They have jobs, careers, and in some cases are the primary or sole income earner in their household. A 50 per cent cut to social, civic and community participation funding does not just remove community participation from our members’ lives. It removes a parent from the workforce. The financial consequences for these families, often already managing on reduced or single incomes in the current cost-of-living environment, are immediate and severe.

• Many of our members who live in Supported Independent Living (SIL) have no informal supports available during the day. Day programmes and community access are what fills the daytime hours outside the SIL arrangement. A 50 per cent cut to social, civic and community participation funding for a person in SIL is not a cost that shifts to a family carer. There is no family carer available. The Government’s own Explanatory Memorandum acknowledges that ‘changes could likely impact on other mainstream services systems at both state and territory and Commonwealth levels’ but offers no plan for what those impacts will be or how they will be managed for participants with the most complex needs.

• Some of our adult members live in their own homes with funded support, often built carefully over years of planning. Their daily lives, getting to medical appointments, going for a walk, visiting a parent in aged care, attending the bank or the supermarket, depend on social, civic and community participation funding because that is what pays for the trained support worker who must be with them outside the home. Walking into a hairdresser, explaining the haircut required, sitting through it without behavioural escalation, paying for the haircut (with the person’s own money, not NDIS funding), every step requires a familiar, trained support person. These are not luxuries. They are the basics of an ordinary life. A 50 per cent reduction to this funding does not mean these members access half as much community. It means the funded support hours collapse below the level required to sustain a person living in their own home at all. The arrangement will not be financially viable, and the person will be pushed back into a higher-cost group setting. This is the opposite of independence, and the opposite of the Royal Commission’s findings.

• Many of our members have behaviours of concern, including self-injurious behaviour and behaviours that may harm others. A significant proportion require 1:1 or 2:1 staffing ratios in community settings. The application of 1:3 staffing ratios in SIL already places significant strain on providers serving our community. Providers currently absorb unfunded gaps in staffing costs to maintain participant safety. A 50 per cent social, civic and community participation cut will push many of these providers to the point where this is no longer financially viable. Providers will exit, and our members will have funded plans and no provider willing to deliver the support.

Page 14 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

• Children and teenagers with Cri du Chat syndrome rely on social, civic and community participation funding to participate safely in community life. Due to behaviours of concern, choking risks, mobility challenges, and communication support requirements, a large proportion require active 1:1 supervision at all times. In a community setting, whether that is a birthday party, a community event, or a trip to a local park, a parent managing multiple children cannot safely provide that level of supervision alone. A funded support worker is not a luxury in these situations. It is what makes safe participation possible for the child with Cri du Chat syndrome, and safe supervision possible for every other child present. For our teenagers, social, civic and community participation funding also supports the gradual development of age-appropriate independence, social connection, and community participation outside the family home. Without it, those opportunities disappear entirely.

• No family chooses to take an extra support person in the car, to a family event, on a holiday, on an outing, or to the shops if they do not need to. It is uncomfortable. It is a financial and logistical complication. It changes the dynamic of the occasion. Families do it because their child’s safety and inclusion depend on it. When politicians and commentators describe social, civic and community participation funding as discretionary or as a ‘lifestyle add-on’, they are describing something that does not exist in our community. The funding pays for what is needed for our members to leave the house safely, and for the rest of their family to function. Reducing it does not reduce a luxury. It removes the basics.

• In our 2025 Family Insights Survey, 29 per cent of respondents reported experiencing discrimination specifically in the area of community participation – a figure that reflects how hard our families must already work to secure inclusion. A 50 per cent social, civic and community participation cut will make that harder still.

• The Government’s own analysis, reported publicly in May 2026, identifies people with intellectual and developmental disability as among those who will suffer the greatest harm from the proposed cuts. Our members are exactly this cohort.

We also want to put on record the clinical reality of sudden support changes for people with Cri du Chat syndrome. It is well established in clinical literature, and confirmed across our community in lived experience, that people with significant intellectual disability and complex communication needs require careful, gradual, and well-planned transitions to any change in their routine or supports. Sudden change is not a neutral administrative event for our members. It triggers anxiety, distress, behavioural escalation, sleep disturbance, regression in skills, and in many cases self-injurious behaviour or behaviours that harm others. A 50 per cent reduction in funded community access taking effect on a defined date will not be experienced by our members as a budget adjustment. It will be experienced as the loss of a trusted support worker, the loss of access to a familiar program, the loss of routine, and in many cases the loss of the person’s only structured engagement outside the home. The behavioural consequences for the person and the household will be significant, and they will fall onto the same families this Bill is already increasing the caring load on. The Bill makes no provision for transition. Proposed section 34A allows determinations to take effect through the operation of law on a date specified by the Minister, with no clinical transition planning required. This is reckless in the context of our community.

The Bill states that the Minister must have regard to participant safety when making a support determination. However, ‘safety’ is not defined anywhere in the provision. The consequences we have described above, for our members who attend day programmes, for

Page 15 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

those in SIL with no informal daytime support, for those living in their own homes with support, for those whose providers will no longer be able to sustain the staffing ratios required to keep them safe, and for children and teenagers, demonstrate that this undefined safeguard offers no real protection. If these are the foreseeable consequences of the first proposed blanket cut, we have no confidence that the safety of our members, who are among the most vulnerable people in the scheme, will be protected by a Minister applying a power with no definition of what safety requires and no obligation to assess its impact on any individual.

A second Ministerial cap mechanism: proposed section 33(2EA) Proposed section 34A is not the only mechanism this Bill creates for the Minister to cap the supports a participant receives below their assessed need. Item 68 of Schedule 1, Part 6 inserts new subsection 33(2EA), which compounds with section 34A and must be considered alongside it.

Proposed s 33(2EA) A determination made under subsection (2E) may specify, for a support or a class of supports, in relation to participants generally or a class of participants: (a) a maximum amount of funding for the support or supports in the class of supports; or (b) a maximum intensity for provision of the support or supports in the class of supports; or (c) a maximum ratio of worker to participant for provision of the support or supports in the class of supports.

This provision allows the Minister, by legislative instrument, to set caps on the maximum funding amount, the maximum intensity (frequency or duration), or the maximum worker-to participant ratio for any support or class of supports. The cap can apply to all participants generally or to any class of participants the Minister specifies. Companion subsection 33(2EB) requires that the funding component amount must not exceed the cap. The accompanying note states explicitly that the cap operates regardless of whether the funding component amount meets the actual cost of the supports it relates to. There is no individual review or appeal mechanism for the cap itself, and the sunsetting rules of the Legislation Act 2003 are disapplied.

The Explanatory Memorandum sets out two examples that demonstrate the intended effect of this provision. In the first, ‘Astrid’ is assessed as needing $44,000 in social, civic and community participation supports, but a Ministerial cap of $30,000 applies, so she immediately loses $14,000 worth of supports the Agency has accepted are reasonable and necessary Layer in the proposed 50 per cent cut to social, civic and community participation budgets, and a person individually assessed as requiring $44,000 is left with just $15,000 one third of what she actually needs. In the second, ‘Marco’ is assessed as needing 30 hours per discipline of allied health therapy, but a cap limits him to 25 hours per discipline, so he loses 5 hours per discipline (15 hours in total across his three allied health supports) the Agency has accepted are reasonable and necessary. Combine this with the Minister’s power to set prices for NDIS supports below market value, and again the real reduction of support is even more disproportionate to the individually assessed need.

Page 16 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

Read together, proposed sections 33(2EA) and 34A create two parallel and compounding Ministerial cap mechanisms. The first sets a cap on the maximum that can be funded for a support, regardless of assessed need. The second reduces the funding component amount of a category by a percentage. A single participant can be subject to both: their assessed reasonable and necessary support is first capped under section 33(2EA), and then the remainder is reduced by 50 per cent under section 34A. Both mechanisms allow the Minister to override the individual reasonable and necessary assessment that is the legal foundation of the scheme under section 34(1). Both operate ‘regardless of whether the funding component amount meets the actual cost of the supports’. Neither carries an individual right of review against the cap itself. The Bill creates, in effect, a dual override of the reasonable and necessary test.

The co-payment problem that flows from section 34A(5) Proposed section 34A(5) is explicit: the determination has effect even where the result is that funding falls below the actual cost of a participant’s reasonable and necessary supports. This is the legislative authorisation for a co-payment. For the first time in the scheme’s history, a participant may be assessed as needing a support, that support may be in their plan, and yet the funding may not cover its cost. Someone must pay the difference. In our community, many will not have the capacity to do so.

• Almost all of our adult members receive the Disability Support Pension as their primary income. There is no financial capacity to make co-contributions on supports that can cost hundreds of thousands of dollars annually.

• Our family carers are not in a position to absorb gap payments. Many are not in full- time work, not by choice but because caring for a family member with Cri du Chat syndrome is not compatible with standard working arrangements. Our 2025 Family Insights Survey found that almost half (48.3 per cent) of families reported their caring responsibilities impacted on their ability to participate in work. One member put it plainly: “The load of managing an NDIS plan and medical appointments prohibits full time work for me. My super has taken a significant hit which is a stress.” We address the broader carer wellbeing picture in section 5. Gap payments cannot be absorbed by people already managing these realities.

• There is also a destructive cycle embedded in this. If Ministerial pricing determinations set prices below the market rate, providers may decline to deliver services at the Agency price. Families must then either pay the difference privately or miss out on the support. When families cannot afford the gap payment, their plan utilisation appears low. Under the proposed amendments low utilisation is then used at the next plan review as evidence that the participant does not need as much funding. The person ends up with a smaller plan not because their needs have reduced, but because the pricing made the support inaccessible. A 50 per cent social, civic and community participation cut accelerates this cycle for every family in our community.

Where this provision contradicts the Act This provision is irreconcilable with the framework the Act establishes. The Act requires individual assessment. The Bill enables category-wide reduction. The Act guarantees lifetime certainty of care. The Bill explicitly permits funding to fall below the cost of assessed

Page 17 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

supports. The Act gives people with disability the right to pursue any grievance. The Bill excludes support determinations from merits review.

s 3(1)(d) NDIS Act 2013 …provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme…

The Bill also inserts new sustainability principles that the CEO must have regard to in performing all planning functions:

Proposed s 17B(1) and In performing the CEO’s functions and exercising the CEO’s (2)(a) powers under this Chapter, the CEO must have regard to the principles in this section. Considerations relevant to the CEO’s performance of functions and exercise of powers include the following: (a) the National Disability Insurance Scheme is to fund supports for participants to meet disability support needs that arise directly from impairments in relation to which participants meet the disability requirements…

Financial sustainability is no longer a consideration that operates alongside the objects of the Act. Under proposed section 17B it becomes a principle that the CEO must actively pursue in every planning function. Combined with the Minister’s power to cut support categories by determination, this creates a scheme in which every planning decision is oriented toward spending less, not toward meeting individual need.

RECOMMENDATION Proposed section 34A must be removed or fundamentally restructured. Proposed subsection 33(2EA) must be removed or fundamentally restructured on the same basis. Any cap or reduction applying to a support category must require individual needs assessment before it applies to a participant’s plan. Participants with behaviour support plans, 1:1 access ratios, AAC-dependent communication needs, or no available informal daytime support (including those in SIL or in independent living with 24-hour support) must be explicitly exempt. All support determinations and cap determinations must be reviewable decisions under section 99 of the Act. Any determination must require a published Human Rights Compatibility Assessment and be subject to Senate disallowance within 15 sitting days. The sunsetting exemption must be removed. No further reduction may be applied to any support category already reduced within the preceding three years without an independent review. The Government must provide an explicit, legislatively enforceable assurance that participants who have already experienced a 50 per cent or greater social, civic and community participation reduction in a recent reassessment will not be subject to the further blanket 50 per cent determination. All provisions enabling de facto co-contributions or co payments must be removed.

Page 18 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

4.3 Redefining what the scheme will fund: ‘directly from’, personal circumstances, and the narrowing of reasonable and necessary

The ‘directly from’ amendment The Bill amends paragraph 34(1)(aa) of the Act, replacing ‘arising from an impairment’ with ‘arising directly from an impairment or impairments.’ The Explanatory Memorandum states this is intended to clarify that a direct causal link is required rather than a merely contributory one.

Amended para 34(1)(aa) …the support is necessary to address the needs of the participant arising directly from an impairment or impairments in relation to which the participant meets the disability requirements or the early intervention requirements.

For our members, disability does not operate in a straight line from a single cause to a single effect. Cri du Chat syndrome is a chromosomal condition that affects intellectual development, communication, behavioural regulation, sensory processing, muscle tone, and emotional development simultaneously and interactively. The consequences of these impairments compound each other. Intellectual disability limits communication. Limited communication creates social isolation. Social isolation generates anxiety. Anxiety generates behaviours of concern. Behaviours of concern require specialist behaviour support. Hypotonia affects mobility, physical endurance, and the capacity to manage personal care independently. Every one of these connections is real, clinically documented, and currently fundable.

Under the new wording, the question becomes whether the behaviour support arises ‘directly from’ the chromosomal deletion. We contend that it does and is a hallmark feature of the syndrome. However, we are concerned that a strict reading could find that it does not: the chromosomal deletion causes intellectual disability; the intellectual disability affects communication; the communication difficulty creates isolation; the isolation generates anxiety; the anxiety generates the behaviour. There are multiple steps between the eligible impairment and the funded support need. The word ‘directly’ creates a legal basis for refusing to fund the support. It does not matter that every step in that chain is clinically predictable and well documented. What matters is whether an assessor or planner, applying the new wording, decides the connection is sufficiently direct.

Our 2025 Family Insights Survey confirms the interconnected nature of these support needs across our community. Across the lifetime, 90 per cent of respondents reported behaviour challenges, 90 per cent incontinence, 90 per cent sensory needs, 80 per cent self-harm, and 70 per cent behaviours that hurt others and pain or medical complexity. These are not separate conditions. They are the compounding consequences of a single chromosomal deletion, and they interact in exactly the ways the clinical literature predicts. A legal test requiring each support to arise ‘directly’ from the impairment, taken without explicit guidance on interaction effects, may be used to deny funding for these well-documented and clinically necessary supports.

Page 19 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

We note that the Bill simultaneously removes the existing note under section 34(1) that acknowledged support needs may be affected by the interaction of impairments with other conditions and environmental factors. That note was a protection. Its removal is not incidental. It removes an explicit acknowledgement that complex, interacting conditions produce complex, interacting support needs, and it does so at the same time as requiring that support needs arise ‘directly from’ a single eligible impairment. The combined effect of these two changes will be used to narrow the scope of fundable support for our members.

The exclusion of personal circumstances from functional capacity assessment Proposed section 9B introduces a legislative definition of functional capacity for the first time. This definition is foundational to both access to the scheme and to plan reassessment under proposed section 48A.

Proposed s 9B(1) A person’s functional capacity, in relation to an activity, is the person’s ability to undertake the activity: (a) without assistance from other people, assistive technology or modifications; and (b) in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.

This provision requires that when assessing whether a person has the functional capacity to access the scheme, or whether a change in functional capacity justifies a plan reassessment, the assessor must, as far as possible, set aside the person’s actual living circumstances.

Consider what this means for a seven-year-old child with Cri du Chat syndrome in a household with a newborn sibling. That child requires constant, active 1:1 supervision. When their parent is occupied with the infant, the child is at immediate safety risk: they may ingest non-food items, climb unsafely, injure themselves or others, or engage in other dangerous behaviours. The need for funded support worker hours during that period is not a lifestyle preference. It is a direct and foreseeable safety risk arising from the interaction of the child’s impairment and their household circumstances. Under proposed section 9B, those household circumstances must be excluded, as far as possible, from the assessment of the child’s functional capacity. A planner applying this definition could conclude that the support need does not meet the threshold, when in reality a child’s safety is at stake. This is not a hypothetical edge case. It is the kind of situation our families navigate regularly.

SAFETY CONCERN Section 9B requires assessment of functional capacity in a context that excludes personal circumstances. For a family member with Cri du Chat syndrome whose behavioural profile interacts with specific household circumstances to create safety risks, excluding those circumstances from assessment is not a neutral administrative simplification. It is a mechanism for denying support that is genuinely necessary for participant safety. It directly contradicts section 3(1)(ga) of the Act, which requires the scheme to protect and prevent people with disability from experiencing harm.

Page 20 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

RECOMMENDATION 1. The amendment to paragraph 34(1)(aa) inserting ‘directly from’ must not proceed without explicit guidance confirming that the well-documented flow-on effects of a primary disability, including the behavioural, psychological, and social consequences of intellectual disability and complex communication needs, constitute support needs arising from the eligible impairment. The removed note must be restored.

2. Proposed section 9B must be amended to require, rather than exclude, consideration of personal and environmental circumstances in functional capacity assessment and support planning. Excluding personal circumstances creates foreseeable safety risks for participants with high and complex needs and contradicts section 3(1)(ga) of the Act.

4.4 Access, early intervention, and the risk to infants and young children (proposed sections 9B and 24 to 25A)

What the current Act provides Sections 24 and 25 of the Act set out the disability and early intervention access requirements. Section 24(1)(b) requires that the person’s impairment results in substantially reduced functional capacity to undertake one or more relevant activities. Evidence can come from multiple sources: medical reports, treating clinician assessments, and condition-specific documentation. For our members, whose diagnosis is chromosomally confirmed and whose functional profile is comprehensively documented in peer-reviewed clinical literature, this multi-source approach allows the real and complex picture of a person’s needs to be properly established.

What the Bill proposes The Bill replaces the current evidence-based access pathway with a mandatory standardised functional capacity assessment administered by assessors approved by a Technical Advisory Group (TAG). Diagnosis-based entry pathways are removed. Access depends on performance on the standardised tool, assessed against the functional capacity threshold in proposed section 9B. The Explanatory Memorandum also notes tightened permanence criteria, requiring that all appropriate treatment has been undertaken before an impairment is accepted as permanent (proposed sections 24(5) and 25(1B)).

Infants and children diagnosed within 2 years of birth Cri du Chat syndrome is commonly diagnosed at birth or in early infancy through chromosomal testing. The diagnosis is clear, genetically confirmed, and permanent. Its clinical profile, including the pattern of intellectual disability, communication impairment, and support needs across the lifespan, is well established in the international clinical literature.

However, an infant or very young child with a confirmed Cri du Chat diagnosis will not yet display the full range of functional limitations that will develop over time. Their impairment is real and clinically certain. Its consequences are predictable and documented. But at the point of diagnosis, those consequences may not yet be observable in a standardised

Page 21 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

functional capacity assessment. Under a framework that removes diagnosis-based access, an infant with a confirmed chromosomal diagnosis of Cri du Chat syndrome could be denied timely NDIS access simply because their functional limitations are not yet sufficiently visible on the assessment tool. This is a direct and predictable consequence of removing the diagnostic pathway.

Early intervention is not optional for children with Cri du Chat syndrome. The clinical and research evidence is consistent: early access to speech pathology, occupational therapy, physiotherapy, and developmental support produces significantly better long-term outcomes. The NDIS Act itself recognises this: section 3(1)(d) specifically includes early intervention supports as an object of the scheme. Delaying access while a family waits for functional limitations to become severe enough to satisfy a standardised assessment means delaying the interventions that could make the greatest difference. The child’s impairment is already confirmed. The need for early intervention is already established. The only question should be how to deliver it, not whether the diagnosis is sufficient.

KEY CONCERN A confirmed chromosomal diagnosis of Cri du Chat syndrome in an infant or young child is sufficient evidence of permanent, significant disability with well-documented support needs that will intensify over time. Requiring a functional capacity assessment that cannot reliably be applied to an infant, and that must exclude the personal circumstances in which that child lives, creates a barrier to early intervention that is directly contrary to the scheme’s objects under section 3(1)(d) of the Act.

The assessment tool and assessor expertise problem Our concern about the standardised assessment tool is not primarily about our members having a good day on assessment day. For most of our members, support needs are stable, severe, and well documented. Our concern is about the capacity of the tool and the assessors using it to accurately capture the genuine complexity of need across our community.

• Many of our members rely on AAC systems, Key Word Sign, or gesture for communication, and a standardised assessment tool cannot be meaningfully applied to someone who communicates in these ways without genuine assessor expertise in those methods. The NDIA have confirmed that assessors will be public servants with no formal disability training, not allied health professionals. We submit that all assessments of people with Cri du Chat syndrome must be conducted with a parent, legal guardian, or nominated support person present who can speak to the person’s actual daily functioning. This is a safeguard for all our members, not only those with the most complex needs: some of our more verbal members may overestimate their own abilities, and an assessment conducted without someone who knows them well risks significantly underestimating their real support requirements. In our 2025 Family Insights Survey, 50 per cent of respondents reported using Key Word Sign or Auslan and 25 per cent used dedicated AAC devices. One respondent asked simply: “Is the assessor competent in AAC?”. It is a question the TAG must be required to answer affirmatively before any assessment of a member of our community proceeds.

Page 22 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

• The condition is genetically confirmed and permanent. The permanence criteria are not in genuine dispute for our members. Requiring families to satisfy a treatment completion test before an impairment is accepted as permanent is unnecessary for a condition with no curative or substantially restorative treatment. It creates administrative burden without clinical justification. We also note that some of our adult members transitioned into the NDIS from state-based programmes and do not have original diagnostic documentation, as it was not required at the time of transfer. Requiring them to produce records that no longer exist in order to satisfy permanence criteria for a condition that has been government-supported for decades is an access barrier with no clinical justification.

Mainstream alternatives that do not exist The Explanatory Memorandum acknowledges that ‘children whose social, civic and community participation budgets are reduced may re-engage with mainstream out of school hours and vacation care programs.’ We need to address this directly.

Many of our members have already been told by out of school hours care (OSHC) providers that they cannot accommodate their child. There are insufficient funding and staffing arrangements in OSHC programmes to provide the level of support children with complex needs require. A child who needs 1:1 supervision, management of continence needs, physical assistance, and trained behaviour support cannot safely attend a service designed for typically developing children at a ratio of 1:15. The cognitive and physical demands of a school day are already significant for children with Cri du Chat syndrome, and expecting them to continue expending that energy in an OSHC environment – without appropriate support – risks compounding the very developmental challenges the NDIS is meant to address.

The NDIS Review itself stated that ‘changes to access and budget setting processes for children and young people should only be implemented once widespread foundational supports are in place.’ Foundational supports are not in place. The Thriving Kids programme is in early tender in just one state and has not began the process in others, and is for children aged eight and under with autism and developmental delay with low to moderate support needs. Our members are not that cohort. For children with Cri du Chat syndrome, the relevant foundational support infrastructure does not exist, is not funded, and is not planned. Redirecting our members toward mainstream services that cannot accommodate them is not an alternative. It is an absence of provision.

RECOMMENDATION 1. Chromosomally confirmed conditions including Cri du Chat syndrome must retain a diagnosis-based access pathway for all ages, including infants and young children, where the functional impact is established in clinical literature and where functional capacity assessment cannot be reliably applied or would delay critical early intervention.

2. Any standardised functional capacity assessment tool must be co-designed with rare-condition communities and independently validated in trials that specifically include non verbal participants, AAC-dependent communicators, and infants and young children before use in any access determination.

Page 23 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

3. All assessments of people with Cri du Chat syndrome must include a parent, legal guardian, or nominated support person.

4. The TAG must include mandatory specialists in rare chromosomal conditions and at least two representatives with lived family experience of complex disability.

5. Existing participants must have a minimum five-year transition period before reassessment under new criteria.

6. The Government must not redirect children or adults with Cri du Chat syndrome to mainstream or foundational services that have not yet been designed, funded, or demonstrated to be capable of accommodating participants with high and complex support needs.

4.5 Legislating that family care comes first: parental responsibility, informal supports, and what this will mean at every stage of the Cri du Chat journey

What the Bill inserts Schedule 1, Part 6 inserts new provisions into section 34(1) of the Act defining how the CEO must approach the question of what it is reasonable to expect families and the community to provide. These provisions do not merely clarify existing practice. They legislate a new presumption.

Proposed s 34(1G) For the purposes of paragraph (1)(e) so far as it applies in relation to a participant who is a child, the CEO must take into account the presumption that parents are responsible for providing substantial care and support for their children.

Proposed s 34(1H) For the purposes of subsection (1G), substantial care and support includes: (a) supervision, personal care, transport, emotional support and behavioural support; and (b) other assistance with the activities of daily living that, regardless of the child’s disability, would reasonably be expected of a parent of a child of a similar age.

Proposed s 34(1K) For the purposes of paragraph (1)(e), the CEO must consider: (a) whether relying on family, carers, informal networks or the community would expose a participant or another person to a material risk of harm… and (b) the desirability of supporting, maintaining and strengthening informal supports and community networks in preference to replacing those supports and networks with funded supports, except in cases in which replacement of those supports and networks is necessary…

What ‘parental responsibility’ means for our community

Page 24 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

We want to be clear about something the NDIA already does, which this legislation will enshrine and make significantly harder to challenge. Planners regularly refuse or reduce support worker hours for children with Cri du Chat syndrome on the basis of ‘parental responsibility.’ The reality is that what our families actually do bears no resemblance to what is ordinarily expected of a parent.

• Supervision of a typically developing primary school age child involves checking in periodically and maintaining general awareness of their whereabouts. Supervision of a child with Cri du Chat syndrome at the same age involves constant, uninterrupted 1:1 attention because the child cannot be left safely alone for any period. That child may eat non-food items, injure themselves, injure others, or put themselves in immediate danger the moment a parent looks away. This is not ordinary supervision.

• Personal care for a typically developing teenager is minimal: they manage their own hygiene, dress themselves, and are fully continent. Personal care for a teenager or adult with Cri du Chat syndrome is fundamentally different in kind, not degree. It commonly includes the full physical management of double incontinence, with the changing of continence aids and intimate personal care that does not diminish as the person ages. For many of our members this continues across their entire lifespan. We want the Committee to understand what this often involves in practice, while preserving the dignity of our members. Continence care is regularly required to be performed while the person is biting, kicking, pulling hair, or otherwise displaying the behaviours of concern that are a clinically established feature of this syndrome. Care must be provided while protecting the person from contact with faeces or toilet water, which their sensory profile and anxiety can drive them to seek out. This is skilled, physically demanding, emotionally challenging work that is required multiple times a day, often during the night, for the person’s entire life. To legislate a comparison between this and the care ‘reasonably expected of a parent of a child of a similar age’ is not just legally inappropriate. It is a profound failure to understand what our families actually do. We ask the Committee to consider that comparison honestly and to recognise that our families have never been on equal footing with parents of typically developing children, no matter how often the legislation pretends otherwise.

• The Bill defines parental responsibility to include behavioural support. Behavioural support for a child with Cri du Chat syndrome who has self-injurious behaviour or behaviours that may harm others means trained, specialist intervention using evidence-based strategies that must be consistently and correctly implemented. This is not something a parent can provide as part of ordinary parenting. It requires training, capacity, and in many cases the ongoing support of a specialist behaviour support practitioner.

We are also very concerned about what will be written in subsequent NDIS operational guidelines to implement these provisions. Based on current practice, we have every reason to expect that planners will use ‘parental responsibility’ as a basis for blanket refusals of support worker hours for children with Cri du Chat syndrome, regardless of the child’s individual clinical presentation and household circumstances. Legislating the principle will make those refusals harder to challenge and will result in risks to children’s safety.

We have two further concerns about these provisions that go beyond the comparison with typical parental responsibility.

The first is the term ‘substantial care’ itself. It appears in proposed section 34(1G) but is not defined anywhere in the Bill. The partial definition offered in proposed section 34(1H) supervision, personal care, transport, emotional support and behavioural support

Page 25 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

describes, without any apparent recognition of this, the very supports our families are seeking NDIS funding to access. Leaving ‘substantial care’ undefined in legislation that will be applied by planners making individual funding decisions is not a drafting oversight. It is an invitation to inconsistency, and our community has already lived through years of exactly that inconsistency. An undefined term that planners can apply broadly to deny or reduce funded support will be applied broadly to deny or reduce funded support.

The second concern is more serious still. Under proposed section 34(1K), the only legislated ground on which funded support may replace informal or family support is where relying on family would expose the participant or another person to a material risk of harm. In practice, this means that the pathway to funding a support worker for a child becomes a formal declaration by their parent that they cannot safely care for their child. Families who make that declaration - who state, in writing, to a government agency, that their child is unsafe in their care without funded support - risk triggering mandatory reporting obligations and referral to child protection services. This is not a hypothetical risk, it is already happening in practice and has been raised publicly by the CEO of the Advocating for Children with Disability. It is a foreseeable consequence of the drafting, and it will deter families from seeking the support their children need. It will do so most acutely in families who are already under the greatest pressure.

The impact on families at every life stage Proposed subsection 34(1K) applies to all participants, not just children. For our adult members, the preference for informal and community supports over funded professional support creates a parallel and equally serious problem. Adults with Cri du Chat syndrome have the same rights to choice and control, under sections 4(4) and 4(8) of the Act, as any other adult participant.

The increased reliance on informal supports this Bill envisages will affect our families at every stage of the Cri du Chat journey, and at every stage the demands placed on parents and carers exceed what is reasonably expected of families of typically developing people of the same age. We set out the full carer wellbeing picture from our 2025 Family Insights Survey in section 5. In short: the majority of our families are already stretched to or beyond their limits, with caring responsibilities preventing them from taking time for themselves, low energy and capacity, and inadequate support. The Bill proposes to increase the caring load on these same families:

• In the early years: parents manage intensive care demands, therapy schedules, and NDIS administration simultaneously. Support worker hours are what allows parents to maintain their own health and employment while their child receives appropriate support.

• Through school age: after school hours, school holiday periods, and periods when a child is unwell all require the same level of supervision and personal care support. Our members have already been turned away from OSHC programmes, and we address the lack of mainstream alternatives in detail in section 4.4.

• Through the teenage years: behavioural challenges may intensify through adolescence. Continence needs continue. Supervision requirements remain constant

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

or increase. Parents are a decade older than when their child was in early intervention.

• Into adult life: adults with Cri du Chat syndrome require equivalent or greater support than they did as children. The expectation that family carers will continue to provide substantial informal care indefinitely, without adequate funded support, is not consistent with the health and sustainability of those carers, the rights of the adult participant, or the reality of ageing parents.

We are concerned that the combined effect of reduced social, civic and community participation funding and the informal supports preference in proposed subsection 34(1K) will over time push families toward placing their family member in group homes or Supported Independent Living not because it is the right decision at the right time, but because funded support has been reduced to the point where no other option remains. We address the research on crisis-driven transitions in section 5.3.

RECOMMENDATION 1. Proposed subsection 34(1K) must explicitly preserve the choice and control principles for adult participants under sections 4(4) and 4(8) of the Act. It must not be used to reduce funded professional support for adult participants on the basis of family availability.

2. The NDIA must publish clear operational guidance that the parental responsibility provisions in proposed subsections 34(1G), (1H), and (1J) do not authorise blanket refusal of support worker hours for children with Cri du Chat syndrome or high and complex support needs, and that the comparison to ‘a parent of a child of a similar age’ must account for the actual care demands created by the child’s specific clinical presentation.

3. Any decision substantially reducing a participant’s funded support hours in reliance on informal support availability must remain a reviewable decision under section 99 of the Act.

4. The Government must not redirect participants to mainstream or community alternatives that have not demonstrated the capacity to accommodate participants with high and complex support needs.

4.5A Concentration of power in the Minister and the risk under any future government

We are also concerned about what this Bill means structurally, not only in the hands of the current Minister but in the hands of any future Minister. The powers this Bill concentrates in the Minister are extraordinary. The power to cap or cut any support category by any percentage at any time (proposed sections 33(2EA) and 34A). The power to determine pricing for the entire scheme (Schedule 3). The power to make transitional rules with broad effect (Schedule 5). The power to determine what counts as a designated provision for automated decision-making (proposed section 59C). Even if the current Minister exercises these powers cautiously, the legislation remains. A future government, with different priorities or a different relationship with the disability community, will inherit the same set of levers. We cannot assess this Bill on the basis of how it will be used by the people who

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

wrote it. We must assess it on the basis of what it permits any future government to do. That assessment should give the Committee serious pause.

4.6 Restricting the right to seek a plan review in a system that is already failing (proposed section 48A)

What the current Act provides Section 48 of the Act allows participants and their families to request an unscheduled review of their plan where circumstances have changed in a way that affects their support needs. This right exists because disability is not static and because the NDIA does not proactively monitor what is happening in participants’ lives between scheduled reviews. Section 4(7) provides that people with disability have the same right as other members of Australian society to pursue any grievance. These are essential safeguards in a scheme where individual plans are the primary vehicle through which support is delivered.

What the Bill proposes Proposed section 48A narrows the grounds on which an unscheduled reassessment may be requested. A reassessment may only be conducted where there has been a significant change to the participant’s ongoing support needs arising from an eligible impairment, that change results from a significant alteration in functional capacity or an unanticipated, significant, and ongoing alteration in personal or environmental circumstances, and the participant has experienced a substantial reduction in the ability to perform daily activities.

Proposed s 48A(3) The condition in this subsection is met in relation to the alteration mentioned in subparagraph (1)(b)(ii) if there has been an unanticipated, significant and ongoing alteration in the participant’s: (a) living arrangements; or (b) education arrangements; or (c) work arrangements; or (d) network for informal support.

The Bill also removes the existing right to request a reassessment on the basis of a change in informal support networks from the list of reviewable decisions under section 99. These changes take effect within seven days of Royal Assent, the fastest-commencing provision in the entire Bill. At the same time, the required response period is extended from 21 to 90 days. We have not been able to identify any coherent explanation for this combination: the grounds for requesting a review are being dramatically narrowed, but the Agency needs more than four times as long to respond to the requests that do get through.

Why this must not proceed before the system is fixed We understand the intent behind restricting unscheduled reviews. If the NDIA is receiving 12,000 unscheduled review requests per month – and the Explanatory Memorandum acknowledges a target of reducing this to between 5,000 and 6,000 – something needs to change. We agree.

But the cause of that volume is not participant behaviour. It is a scheduled review system that does not function as intended. Our 2025 Family Insights Survey found that more than

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

half of respondents had not had a plan reassessment in over a year, and 29 per cent had not had one in three years or more. When plans are extended for years without review and circumstances change, a change of circumstances request becomes the only available mechanism to adjust the plan. This is the most likely explanation for the volume of unscheduled reviews the NDIA is receiving.

The Minister has also been quoted stating that plan funding grows by an average of 25 per cent when a change of circumstances review is conducted. The Government’s response to this is to restrict the mechanism. Ours would be to ask why. If plans consistently require a 25 per cent increase when reviewed, the answer is not that participants are gaming the system. It is that disability support needs change over time, and the continued extension of plans without review means that a plan written five years ago no longer reflects what a person actually needs today. For a young person who was 13 when their plan was last properly assessed and is now approaching adulthood, the gap between their funded supports and their real needs is not incidental - it is the predictable consequence of a system that has failed to keep pace with their life. The unscheduled review process has been the only mechanism available to families trying to close that gap.

Severing that correction mechanism without first fixing the process that makes it necessary will leave our members trapped in inadequate plans with no pathway to address them.

The events that drive change of circumstances requests in our community are not extraordinary. They are the ordinary events of a life with complex disability:

• A primary carer becomes ill or is hospitalised. The participant’s entire support structure collapses overnight. This is foreseeable in any long-term caring relationship and is not ‘exceptional.’

• A provider closes, loses its registration, or withdraws from supporting complex clients because cost-containment measures have made it financially unviable. The participant has no supports. A 90-day response period when a participant has no supports is not acceptable.

• A participant finishes school. Every aspect of their plan must change. This is the most predictable transition in our community, and the NDIA is consistently under prepared to manage it despite advance notice from families.

• A participant’s behaviours of concern escalate. Their plan has inadequate behaviour support funding. Without review, the situation worsens. This is a safety issue, not an administrative inconvenience.

We note that proposed section 48A(3)(d) lists ‘network for informal support’ as a ground for an unanticipated change of circumstances. We read this as acknowledging that a loss of informal support is a legitimate trigger for review. But the provision requires this to be ‘unanticipated.’ For many of our families, the declining capacity of an ageing carer is entirely foreseeable, if not yet acute. By the time it becomes ‘unanticipated’ and ‘significant and ongoing,’ a crisis may already be underway.

We also want to highlight a specific drafting problem in proposed section 48A. Subsection 48A(3) requires that any alteration in living, education, work, or informal support arrangements be ‘unanticipated’ to qualify for an unscheduled reassessment. For our

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

community, the most important life transitions, leaving school, moving from family home into independent or supported living, the death or incapacity of an ageing primary carer, are entirely anticipated. They are not surprises. They are expected, often by many years. But they require full plan review because the supports needed before and after the transition are fundamentally different. A child finishing Year 12 has been finishing Year 12 for thirteen years. The Agency has known about it for as long as the family has. Yet it is the single most disruptive moment in the entire support trajectory for a person with Cri du Chat syndrome, and the supports required after school completion bear no resemblance to those that supported the school years. If ‘anticipated’ transitions are excluded from the grounds for reassessment, this provision will lock our members into plans designed for a life stage they have moved beyond. The drafting must distinguish between ‘anticipated’ (i.e. predictable in time) and ‘minor’ (i.e. capable of being managed within an existing plan). The major life transitions of our community are the former, not the latter, and they require review.

Automatic plan renewal under proposed section 50A and the loss of approved but unused funding Proposed section 50A introduces an automatic plan renewal mechanism. At the end date of an old framework plan, the plan is automatically renewed as a new plan with the same text, with limited exceptions. We want to draw the Committee’s attention to a serious gap in this provision: it does not distinguish between one-off funded supports the participant has used and those they have not yet used. For supports such as home modifications, assistive technology, and large one-off items, the period between approval and execution can be many months or longer, particularly when builders, suppliers, or installation are involved. A family in our community is currently navigating this exact situation. Approval was secured for a home modification that has not yet been executed, and the funding was removed from the extended plan. Under the current Act, that family has avenues to seek correction: a section 100 internal review, a change of circumstances reassessment, or escalation to the Administrative Appeals Tribunal. Under proposed section 50A, when their plan reaches its end date, the unused modification funding will simply not carry over to the renewed plan, and proposed subsection 50A(4)(b) explicitly provides that ‘the making of the new plan does not involve the making of any reviewable decision.’ There is no statutory pathway to correct this. The right of appeal has been excluded by design. his is a serious participant protection issue, and one we trust was an oversight that the Committee will recommend be corrected.

Automated decisions and the end of human review

Proposed section 59B authorises the CEO to arrange for computer programs to take administrative action across a range of designated provisions, including decisions that have previously required human judgement.

Proposed s 59B(1) The CEO may, in writing, arrange for the use, under the CEO’s oversight, of computer programs to take administrative action that may or must be taken by the CEO under a [designated] provision…

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

We draw the Committee’s attention to the recent and ongoing experience of the aged care sector, where the transition to an automated funding assessment system has generated serious and well-documented concerns. In that system, outcomes generated by the automated tool cannot be overridden even where the assessing clinician, in that case a qualified nurse, determines the outcome is dangerously insufficient for the person being assessed. The NDIS community is watching that situation with alarm. We are deeply concerned that the same dynamic, automated outputs that cannot be corrected by the humans closest to the person, combined with restricted review rights, will be replicated here for some of the most vulnerable people in the country. One respondent to our 2025 Family Insights Survey captured this concern simply: “How does a computer take into account the human factor?”

RECOMMENDATION 1. Proposed section 48A must not commence until the NDIA has published, implemented, and independently audited a consistent plan review framework with binding timeframes and participant notification obligations.

2. The circumstances qualifying for unscheduled review must explicitly include: carer medical emergencies; primary provider breakdown or market exit; major life transitions including school completion and change in living arrangements; and significant documented escalation of behaviours of concern. These events are foreseeable and common in our community. They are not exceptional.

3. The word ‘unanticipated’ in proposed subsection 48A(3) must be amended or removed, so that anticipated but significant life transitions (school completion, transition to independent or supported living, ageing carer incapacity) qualify for reassessment.

4. Treating clinicians, behaviour support practitioners, and registered support coordinators must retain the ability to initiate review requests on behalf of participants.

5. Proposed section 50A must be amended so that approved but unused funding for time-bound supports such as home modifications and assistive technology carries over to the renewed plan, or alternatively a clear statutory pathway must be provided for participants to seek review of unused-funding outcomes.

6. The seven-day commencement must be amended to a minimum 180-day transitional period.

7. All decisions affecting a participant’s funded support level, including those taken or triggered by automated computer programs, must remain reviewable decisions under section 99 of the Act, and must require human review before taking effect.

4.7 Ministerial pricing control and the thin-market risk for specialist supports

What the current Act provides and what the Bill changes

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

NDIS pricing has been set by the NDIA through a framework informed by independent market analysis. Section 4(15) of the Act requires that people with disability have access to a diverse and sustainable market for disability supports where quality and best practice are promoted. The Bill transfers this pricing authority directly to the Minister by legislative instrument, with differentiated pricing proposed for registered and unregistered providers.

Why this concerns us Our members rely on highly specialised providers: speech pathologists with AAC expertise, behaviour support practitioners with experience in rare chromosomal conditions, and occupational therapists with complex sensory and behavioural competence. These practitioners work in thin markets. There are very few of them, and their services cannot be delivered at the costs appropriate for mainstream supports.

A Minister responding to budget targets has an inherent conflict of interest in setting these prices. The institutional pressure will always be to set them lower than the market-clearing rate. When that happens, specialist providers exit, and our members retain funded plans they cannot use. We are also concerned about the interaction between pricing and the co payment provisions in proposed section 34A(5): if a Ministerial pricing determination sets a price below what it costs to deliver a support, and a support determination has already cut the category budget by 50 per cent, the combined gap between what is funded and what is needed could be insurmountable. For our members, that gap cannot be filled. It means the support is not accessed.

Our 2025 Family Insights Survey found that 46 per cent of respondents had experienced funding inconsistencies or cuts, and 46 per cent had experienced difficulty engaging suitably qualified providers. These are already live problems before any Ministerial pricing determination takes effect. Families have already obtained quotes that align exactly with NDIS pricing guidance only to have planners refuse the support on cost grounds. A Minister with budget targets setting prices will entrench this misalignment, not resolve it.

RECOMMENDATION Pricing authority must remain with an independent statutory body. Any pricing determination affecting specialist or thin market supports must be accompanied by a published market impact assessment demonstrating that the price will sustain viable service delivery. All pricing determinations must be subject to Senate disallowance within 15 sitting days.

4.8 Mandatory registration of support workers and the risk to families who use independent workers

The Bill expands mandatory registration requirements for providers delivering support to participants considered most at risk of abuse or exploitation. We understand and support the intent behind stronger registration requirements. Provider fraud and exploitation are real and serious problems, and the Royal Commission’s findings on the risks in unregulated settings are not in dispute.

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

However, we are concerned about how mandatory registration will interact with the existing arrangements of our community. Many families of people with Cri du Chat syndrome employ independent support workers directly, including workers engaged through sole trader or informal arrangements. These arrangements are not inherently unsafe. In many cases they represent a careful, relationship-based choice that reflects the profound importance of familiarity and trust for our members. A person with Cri du Chat syndrome who has built a relationship with a specific support worker over several years cannot simply be redirected to an agency-provided worker without cost to their safety, wellbeing, and behaviour. The relationship is not incidental. It is part of what makes the support safe and effective.

If mandatory registration is designed or implemented in a way that makes it practically impossible for sole traders or independent workers to maintain registration, whether due to cost, administrative complexity, or training requirements, our families may be forced to abandon arrangements that work well for them, and our members may lose workers who know them, understand their communication, and are skilled in their specific support needs. The DSA Consortium has supported a graduated, risk-proportionate registration system that rewards quality and consistency. We endorse this position and add that any registration framework must ensure the following:

• Registration must be straightforward and affordable for individual support workers and small providers. A registration system accessible only to large organisations will hollow out the market for individualised, relationship-based support and reduce choice and control for participants who depend on consistent, known workers.

• The choice and control principles under sections 4(4) and 4(8) of the Act must be explicitly preserved. Where a participant has an established, positive relationship with an independent worker, the registration framework must provide a clear, accessible pathway for that worker to become registered without losing continuity of support during the process.

• Registration requirements that apply to personal care delivered in the home must be proportionate to the actual risk profile of that setting, and must distinguish between the risk profiles of different support settings rather than applying a single standard across all contexts.

RECOMMENDATION The mandatory registration framework must include: a clear and affordable registration pathway for independent support workers and sole traders; explicit preservation of participant choice and control including the right to continue engaging a known worker during a registration transition period; risk proportionate requirements that distinguish between support settings; and consultation with families of participants with complex needs before any framework is finalised.

4.8A Schedule 5 transitional rules and the risk of bypassing primary legislation

We are also concerned about Schedule 5 of the Bill, which gives the Minister broad power to make transitional rules by legislative instrument. While transitional rules expire after twelve months and cannot be made after twelve months from commencement, the breadth of

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

subject matter is very wide. Subitem 1(2) of Schedule 5 expressly provides that the rules may have the effect of modifying provisions of the NDIS Act 2013 itself for transitional purposes. This is a Henry VIII power, allowing delegated legislation to override primary law.

We have learned, from recent experience, that the word ‘transitional’ is a label, not a guarantee of impermanence. The replacement supports lists were introduced as a transitional measure. They remain in force eighteen months later, governing the lives of our members. We are concerned that rules made under Schedule 5 will be used in similar ways: to make consequential changes to the operation of the Act that are politically expedient at the time, without the parliamentary scrutiny that primary law would receive.

RECOMMENDATION The transitional rule-making power in Schedule 5 must be tightened: the power to modify provisions of the NDIS Act 2013 itself should be removed; the subject matter of permissible rules should be narrowly defined; mandatory consultation with affected communities, including ours, should be required before any rule is made; and a published impact statement should accompany any rule. Without these safeguards, the Schedule 5 power becomes a parallel legislative pathway that bypasses the Parliament and the people the Act is intended to protect.

4.9 The combined effect: what the NDIS of the future looks like for our members

We want to be direct about what we see when we read all of these provisions together, because we believe it is important that the Committee understands our community’s perspective on the scheme this Bill is creating, not just on any individual amendment.

We see a scheme in which:

• A Minister can cut any support category at any time by any percentage, without individual assessment, without merits review, and without any time limit on how long the cut remains in force

• Functional capacity is assessed without reference to the person’s actual living circumstances (see section 4.3), meaning the assessment cannot capture the real risks and real needs of people whose disability interacts with their environment in complex and dangerous ways

• Supports must arise ‘directly from’ a single eligible impairment, excluding the well- documented compounding effects of complex disability and the flow-on consequences of intellectual disability, communication impairment, and social isolation

• Family and informal care is presumed to be available and preferred at every stage of life, without adequate recognition of what caring for a person with Cri du Chat syndrome actually requires, and without adequate protection for adult participants who have the right to choose their own supports

• Infants and children diagnosed at birth face potential barriers to early NDIS access because their functional limitations are not yet fully observable, at precisely the age when early intervention makes the greatest difference

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

• Children and adults who cannot use mainstream services, because those services are not equipped for their needs, are expected to use them when funded support is cut

• The grounds for seeking review of a plan decision have been dramatically narrowed, the response time extended, and automated computer programs authorised to make decisions that were previously made by humans, while the mechanisms for challenging wrong decisions have been simultaneously reduced

• Financial sustainability is not merely a constraint on the scheme. It is a principle that the CEO must pursue in every planning decision

Taken individually, each of these provisions can be defended on administrative grounds. Taken together, they describe a scheme whose primary purpose has shifted from meeting the needs of people with permanent and significant disability to minimising what is spent on them. The Act promises certainty of lifetime support. The Bill delivers a system in which every aspect of what a person receives, how it is assessed, whether it can be reviewed, and who makes the decisions, has been redesigned around the objective of spending less.

This is a return to a minimum-needs model. It is a move away from the individually assessed, community-inclusive framework that the NDIS was built to be, and toward a system in which people with disability are expected to live in group settings, rely on family care, and access only those supports that meet a financial sustainability test rather than an individual needs test. The Royal Commission showed us exactly where that leads. We will not go back there without saying so as loudly as we can.

In our 2025 Family Insights Survey, 67 per cent of respondents (18 of 27 respondents) expressed concerns about the future as their family member ages and their own capacity to care for them changes. For 76 per cent of our members, home with family remains the primary living arrangement. This is not incidental. It reflects the degree to which family care, often well beyond what is ordinarily expected of any family, has sustained our community’s members through their lives. A scheme that further reduces funded support while increasing family caring responsibilities is not a scheme preparing for this community’s future. It is one that is accelerating toward the crisis point at which those families can no longer cope.

OVERARCHING The accumulated effect of proposed sections 34A, 9B, 48A, CONCERN 17B, 34(1G)/(1H)/(1J)/(1K), 59B, and the amended paragraph 34(1)(aa), read together, is a scheme that is no longer recognisably consistent with sections 3 and 4 of the NDIS Act 2013 as Parliament enacted it. It is also inconsistent with the findings and recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The Committee should consider the combined effect of these provisions, not only their individual merits. We urge the Committee to recommend that the Bill not proceed in its current form.

5. What these changes will mean for our families Page 35 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

When NDIS funding is reduced, the support does not disappear. Someone still has to provide it. In our community, that someone is almost always a family member, most often a parent, most often the mother. This is true at every stage of the Cri du Chat journey. At every stage, the demands placed on parents and family carers far exceed what is required of a parent of a typically developing person at the same age. This Bill increases those demands at every life stage, and our families do not have the capacity to absorb that.

Our 2025 Family Insights Survey found that 59 per cent of our families said caring responsibilities frequently or always prevented them from taking time for themselves. Thirty four per cent reported their energy and capacity to manage their caring role as low or very low. Forty-one per cent said they did not have enough support to manage their caring role. Thirty-four per cent had no access to informal supports at all. The most commonly requested additional supports were access to financial assistance through government (46% of respondents), advocacy or guidance for services (42%), and more respite (38%). These are not figures describing families at the margins of our membership. They describe the mainstream reality of life caring for a person with Cri du Chat syndrome. One member wrote: “It is a lot of voluntary work for parents. I would spend at least a day a week on NDIS matters alone.” That is before we account for the additional direct care hours that would result from a 50 per cent social, civic and community participation cut.

5.1 Workforce exit and financial hardship

A 50 per cent reduction in social, civic and community participation budgets means our family members spend more time at home without funded support. That time has to be filled by a family carer. Families who currently work part-time will need to stop working altogether. Families where one parent has to step back from work will provide more hours of direct care with less financial capacity to manage it.

The financial consequences compound in the current cost-of-living environment. Loss of carer income reduces household financial resilience at precisely the moment when de facto co-contributions and gap payments are increasing. Families on the Disability Support Pension and single carer incomes will face an impossible choice between covering support costs and meeting ordinary household expenses. The mental health consequences of this financial precarity, on top of the already significant weight of caring for a family member with complex needs, are serious and foreseeable.

Our members describe this reality plainly. One respondent said: “Being a carer has cost me everything: my career, income, independence, self esteem, I am 100% reliant on my husband which is not how what I intended when I got married.” Another described how caring responsibilities prevent full-time work: “My super has taken a significant hit which is a stress.” A further respondent had to work casually during school years and only close to home so they could be available when their child’s behaviour escalated. Another had to work in their own business to manage as a single parent and sole provider. One described their caring role as having had a “detrimental impact on my health, both physically and mentally,” including developing CPTSD as the sole carer of their child with Cri du Chat syndrome and three other children, without informal or formal support throughout that time.

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

This is not speculation. Our members are already describing this trajectory. Adults and children with Cri du Chat syndrome are already having funded hours reduced to levels that require one parent to stop working. The Bill will accelerate and entrench this across our community.

5.2 Cost shifting, not cost saving

This Bill does not save money. It moves money. When funded disability support is cut below the level of genuine need, the cost transfers to other systems:

• To family carers, who absorb unpaid care at the cost of their employment, income, health, and long-term financial security

• To the health system, through increased presentations by participants and carers in crisis, and through the consequences of inadequate support, carer burnout, and untreated physical and mental health needs

• To Centrelink and the income support system, as carers who leave the workforce become dependent on carer payments and other income support

• To the aged care system, as parents of people with Cri du Chat syndrome age and can no longer sustain the caring responsibilities the NDIS has shifted onto them

• To emergency and crisis services, as inadequately planned transitions into residential care generate acute breakdowns that are far more costly, and far more harmful, than the supports the Bill proposes to cut

The Government’s Regulatory Impact Analysis addresses NDIS costs in isolation. It does not address what happens when those costs transfer to other systems. The Committee should require a cross-system cost analysis before this Bill proceeds any further.

RECOMMENDATION The Committee should require an independent cross-system cost analysis of the downstream impacts of this Bill’s funding cuts on health, mental health, Centrelink, aged care, and emergency services before the Bill proceeds. NDIS cost analysis in isolation does not capture the true cost to government of reducing disability supports.

5.3 Crisis-driven transitions, residential placement, and the lessons of

the Royal Commission

We are concerned that the combined effect of reduced social, civic and community participation funding, the informal supports preference in proposed subsection 34(1K), and restricted reassessment rights will over time push families into placing their family member in a group home or Supported Independent Living arrangement not because it is the right decision at the right time, but because no other option remains.

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with

Disability was unequivocal on this point, as we set out in section 3.3. People with disability in closed group settings are more likely to experience violence, abuse, neglect, and exploitation; and transitions into residential care driven by crisis rather than readiness

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

produce worse outcomes and cause lasting harm to both the person with disability and their family.

Our 2025 Family Insights Survey found that 67 per cent of respondents expressed concerns about the future as their family member ages. Seventy-six per cent of our members still live at home with family. Several respondents described reaching, or nearly reaching, their own breaking point. One wrote: “This was the main reason for me putting my adult child in a SIL home as I had no help at all, no respite no resources no friends and no family to help me and I hit my breaking point.” Another described anxiety about continuity of housing: “My adult child is in long term housing but I worry if things change or if he becomes unhappy in current accommodation.” These are families navigating a system already stretched too thin. A 50 per cent social, civic and community participation cut, combined with increased reliance on informal care and restricted review rights, will push more of our families to the same breaking point.

Good transitions are gradual, planned well in advance, and occur while families can still remain closely involved. A policy framework that progressively exhausts family caring capacity does not produce good transitions. It produces exactly the kind of crises the Royal Commission documented in disturbing detail. We do not believe this is the Government’s stated intent. We submit it will be the effect of this legislation as written.

6. Human rights and legal framework 6.1 Australia’s obligations under the CRPD

Australia ratified the CRPD in 2008 and section 3(1)(a) of the Act establishes giving effect to those obligations as a primary object of the scheme. We are concerned this Bill puts Australia in breach of:

• Article 19 (living independently and being included in the community): a 50 per cent cut to social, civic and community participation budgets removes the mechanism of community inclusion for our members. This is not a reduction in a peripheral service. It is the removal of community participation itself.

• Article 26 (habilitation and rehabilitation): reducing capacity building supports and restricting access to therapy and behaviour support removes the supports that constitute ongoing habilitation for our community.

• Article 28 (adequate standard of living): the combined effect of funding cuts, de facto co-payment provisions, restricted review rights, and increased reliance on informal supports creates a foreseeable regression in living standards for our members.

• The non-regression principle: international human rights law requires that governments not take deliberately retrogressive measures reducing economic, social and cultural rights without demonstrating that all available resources have been exhausted and that the measure is necessary and proportionate. The Government has not demonstrated either.

The Down Syndrome Australia DRO Consortium has stated that changes to the NDIS should be guided by the findings of the NDIS Review, the Disability Royal Commission, Australia’s Disability Strategy, and Australia’s obligations under the CRPD. We fully endorse this

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

position. This Bill is inconsistent with all four of those frameworks. The Disability Royal Commission called for a future in which people with disability live in the community with individually funded support, with genuine social inclusion, and free from violence and abuse. This Bill moves in the opposite direction.

6.2 The Disability Discrimination Act 1992 (Cth)

We believe several provisions may constitute indirect discrimination under the Disability Discrimination Act 1992 (Cth):

• Standardised functional capacity assessments that have not been tested or proven to accommodate non-verbal participants or people communicating via AAC, and that require assessment of functional capacity excluding personal circumstances (see section 4.3), impose conditions that people with complex communication disabilities and those in high-risk home environments are less able to satisfy.

• Co-payment provisions impose a financial condition that people who cannot work due to the nature of their disability, and whose carers cannot work full-time for the same reason, are less able to meet than people without disability.

• The two-week submission period for this inquiry imposes a condition on participation in a government process that families managing complex care responsibilities are systematically less able to satisfy than the general public.

6.3 Internal inconsistencies with the existing Act

The Bill creates irreconcilable inconsistencies within the framework the Act establishes:

• The Act requires individual assessment of every funded support as reasonable and necessary (section 34(1)). The Bill enables Ministerial determination of category-wide budget reductions. These cannot coexist.

• The Act guarantees lifetime certainty of care and support (section 4(3)). The Bill enables the Minister to reduce funding below the cost of assessed supports by determination, without individual review.

• The Act requires the scheme to support community participation (sections 3(1)(c) and 4(11)(b)). The Bill cuts the primary funding mechanism of community participation for our members. This is a direct contradiction.

• The Act gives our members the same right as anyone else to pursue a grievance (section 4(7)). The Bill excludes support determinations from merits review and enables automated decision-making for funding decisions, removing meaningful recourse at the same time as removing human decision-making.

6.4 The safeguarding framework is undermined, not strengthened

The safeguarding framework of the existing Act, including section 3(1)(ga), which requires the scheme to protect and prevent people with disability from harm arising from poor quality or unsafe supports, is not strengthened by this Bill. It is undermined. The combination of category-wide funding cuts and caps under proposed sections 33(2EA) and 34A, the exclusion of personal circumstances from functional capacity assessment under proposed section 9B, the restriction of plan reassessment under proposed section 48A, the automatic plan renewal mechanism in proposed section 50A, and the introduction of automated decision-making under proposed section 59B, creates a scheme in which the safety of the

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

most vulnerable participants is no longer adequately protected at any stage. The Royal Commission’s findings on the conditions that produce violence, abuse, neglect, and exploitation of people with disability are not abstract. They describe the system this Bill builds.

RECOMMENDATION The Committee should require an independent Human Rights Compatibility Assessment of the Bill’s combined provisions against Australia’s CRPD obligations and the recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability before the Bill proceeds to a vote.

7. Our conclusion and recommendations We support a financially sustainable NDIS. But the Bill nowhere defines financial sustainability, refuses to address the real cost drivers, and concentrates extraordinary power in the Minister to cut and cap supports across the entire scheme without individual assessment or review. That is not a sustainability strategy. It is a cost-shifting one.

Our members are the original intent of the NDIS. We are not the cost blow-out. And we should not be the ones bearing the cost of that expansion with our supports, our community participation, our families’ employment, and our ability to live safe and meaningful lives.

Section 4(3) of the Act promised our families certainty over our members’ lifetimes. We planned around that promise. The Bill takes it away. Proposed sections 33(2EA) and 34A let the Minister cap and cut assessed reasonable and necessary supports without individual review. Proposed section 50A renews plans automatically, with no carry-over of unused funding and no right of appeal. Proposed section 48A restricts review to ‘unanticipated’ changes, locking us out for the very transitions that define our community’s lives. Schedule 5 grants the Minister rule-making powers that can modify the Act itself. The safeguarding framework that was meant to protect the most vulnerable participants is undermined, not strengthened.

We are genuinely frightened by what this Bill will do to our community at every stage of life. To the infant whose diagnosis no longer secures timely early intervention. To the school-age child turned away from mainstream alternatives. To the school-leaver locked out of review for the most disruptive transition of their life. To the adult in a day programme, in SIL, or in their own home, whose support arrangement collapses on a single date. To the adult facing the segregated arrangements the Royal Commission warned against. These are not abstract policy risks. They are the lives of the people we represent, from birth to old age.

We urge the Committee to recommend that this Bill not proceed in its current form.

Summary of recommendations

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Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

1. Accept late submissions from disability communities who cannot meet the two-week window. Require a minimum of six weeks for community submissions on future NDIS legislation, with accessible submission processes.

2. The Government must publicly define what ‘financial sustainability’ means for the NDIS, including measurable targets, benchmarks, and milestones, before any provisions of this Bill take effect. It must also publish, and act on, a credible plan to address the underlying drivers of NDIS cost growth (the expansion of the scheme beyond its original cohort, provider fraud, and NDIA mismanagement) before any participant supports are reduced.

3. Remove or fundamentally restructure proposed sections 34A and 33(2EA). Any cap or reduction to a support category must require individual needs assessment before it applies to a participant’s plan. Participants with behaviour support plans, 1:1 access ratios, AAC-dependent communication needs, or no available informal daytime supports (including those in SIL or in independent living with 24-hour support) must be explicitly exempt. All support determinations and cap determinations must be reviewable decisions under section 99. Any determination must require a Human Rights Compatibility Assessment and be subject to Senate disallowance within 15 sitting days. The sunsetting exemption must be removed. No further reduction may be applied to any category already reduced within the preceding three years without an independent review. The Government must provide an explicit, legislatively enforceable assurance that participants who have already experienced a 50 per cent or greater social, civic and community participation reduction in a recent reassessment will not be subject to the further blanket 50 per cent determination.

4. Remove all provisions enabling de facto co-contributions or co-payments. The founding principle that reasonable and necessary supports are funded in full must be maintained.

5. Amend the ‘directly from’ amendment to paragraph 34(1)(aa) to include explicit guidance that the well-documented flow-on effects of a primary disability constitute support needs arising from the eligible impairment. Restore the removed note under section 34(1).

6. Amend proposed section 9B to require, rather than exclude, consideration of personal and environmental circumstances in functional capacity assessment and support planning. Excluding personal circumstances creates foreseeable safety risks and contradicts section 3(1)(ga) of the Act.

7. Retain diagnosis-based access pathways for chromosomally and genetically confirmed conditions, including for infants and young children. Early intervention access must not be delayed by assessment tools that cannot be reliably applied to infants. All assessments must include a parent, legal guardian, or nominated support person. Any standardised assessment tool must be co-designed and validated with rare-condition communities and AAC-dependent communicators before use. The TAG must include specialists in rare chromosomal conditions and lived-experience representatives. Existing participants must have at least five years before reassessment. The Government must not redirect participants to mainstream or foundational supports not designed or funded for high and complex needs.

8. Amend proposed subsection 34(1K) to explicitly preserve choice and control principles for adult participants and prohibit reducing funded support hours on the basis of family availability. Require NDIA operational guidance clarifying that parental responsibility provisions cannot be used to blanket-refuse support worker hours for children where clinical need is established. The Government must not redirect participants to mainstream alternatives that cannot accommodate high and complex needs.

Page 41 of 42

Submission 703

Cri du Chat Support Group of Australia  | Senate submission: NDIS Amendment (Securing the NDIS for Future

Generations) Bill 2026

9. Do not restrict unscheduled plan reassessments until the NDIA operates a consistent, transparent, and independently audited plan review process with binding timeframes. Carer emergencies, provider breakdown, major life transitions (including school completion and change in living arrangements), and escalation of behaviours of concern must qualify for review. The word ‘unanticipated’ in proposed subsection 48A(3) must be amended or removed so that anticipated but significant life transitions qualify for reassessment. Treating clinicians and behaviour support practitioners must retain the ability to initiate reviews on behalf of participants. Commencement must be a minimum of 180 days after Royal Assent.

10. Amend proposed section 50A so that approved but unused funding for time-bound supports such as home modifications and assistive technology carries over to the renewed plan, or alternatively provide a clear statutory pathway for participants to seek review of unused-funding outcomes.

11. Automated decision-making must not apply to funding decisions without human review before the decision takes effect. All funding decisions must remain reviewable under section 99 of the Act.

12. Return pricing authority to an independent statutory body. Any pricing determination affecting specialist or thin-market supports must be accompanied by a published market impact assessment. All pricing determinations must be subject to Senate disallowance within 15 sitting days.

13. The mandatory registration framework must include: a clear and affordable registration pathway for independent support workers and sole traders; explicit preservation of participant choice and control including the right to continue engaging a known worker during a registration transition period; risk-proportionate requirements that distinguish between support settings; and consultation with families of participants with complex needs before finalisation.

14. Tighten the Schedule 5 transitional rule-making power. Remove the ability for rules to modify provisions of the NDIS Act 2013 itself. Narrowly define permissible subject matter. Require mandatory consultation with affected communities and a published impact statement before any rule is made.

15. Require an independent cross-system cost analysis of the downstream impacts of these funding cuts on health, mental health, Centrelink, aged care, and emergency services before the Bill proceeds.

16. Require an independent Human Rights Compatibility Assessment of the Bill’s combined provisions against Australia’s CRPD obligations and the recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability before the Bill proceeds to a vote.

We thank the Committee for the opportunity to make this submission. We note that the compressed timeframe has prevented many of our members from submitting individually. This document represents not only our organisation but every family who could not participate in a two-week window while managing the realities of caring for a family member with high and complex support needs. We ask that the Committee treat it as such. We are available to provide oral evidence at any public hearings and to supply additional supporting material, including anonymised case examples from our community, on request.

Contact: criduchat.org.au  | info@criduchat.org.au

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