Submission to the Joint Committee of Public Accounts and Audit
Inquiry into the Administration of the National Disability Insurance Scheme
22 January 2026
Cri du Chat Support Group Ltd.
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criduchat.org.au
info@criduchat.org.au
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Submission to the Joint Committee of Public Accounts and Audit
Submitted by:
Cri du Chat Support Group of Australia Ltd.
Date: 22 January 2026
1. Introduction
The Cri du Chat Support Group of Australia welcomes the opportunity to make a submission to the Joint Committee of Public Accounts and Audit’s Inquiry into the administration of the National Disability Insurance Scheme (NDIS).
This submission draws on the lived experience of families supporting people with Cri du Chat syndrome across Australia, as well as findings from our 2025 Family Insights Survey conducted by our organisation. Our focus is on how current administrative practices, cost-containment strategies and planning approaches are affecting people with significant, lifelong disability and their families.
While we recognise that administrative reforms are underway — including the proposed introduction of ICAN support needs assessments and changes to appeal rights — these reforms are unlikely to affect our cohort for some time and will therefore not address the immediate and ongoing impacts being experienced by our cohort. Families supporting people with Cri du Chat syndrome must continue to navigate the current system, often at considerable personal and financial cost.
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2. About Cri du Chat Syndrome and the Families We Represent
Cri du Chat syndrome is a rare genetic condition resulting in lifelong disability. Our organisation represents 98 families across Australia who are supporting people with Cri du Chat syndrome. Individuals commonly experience severe intellectual disability, have complex communication needs, behavioural and sensory challenges, and ongoing need for close supervision and personal care. Support needs are complex, highly individualised, and do not reduce over time.
Families supporting people with Cri du Chat syndrome therefore rely heavily on stable, adequate and responsive NDIS plans. When administrative decision-making fails, the consequences are significant and long-lasting. This cohort represents exactly the group the NDIS was originally designed to support — people with permanent, high-support needs whose participation in the community depends on sustained assistance.
3. Sustainability of the NDIS and the Misplaced Focus of Cost-Cutting Measures
Our organisation supports the long-term sustainability of the NDIS. However, our experience suggests that current cost-containment strategies are affecting participants with significant lifelong disability, rather than addressing the structural inefficiencies that are driving administrative and legal costs.
People with Cri du Chat syndrome were always expected to be participants in the Scheme. Their support needs are not unexpected, nor are they discretionary. Despite this, families report increasing pressure to accept reduced funding, unsafe staffing ratios, and narrow interpretations of what constitutes “reasonable and necessary” support.
Our 2025 survey reinforces this experience. A majority of respondents identified planners lacking understanding of rare and complex disability (59.1%) and insufficient disability knowledge among NDIA planners (68.2%) as major challenges. These figures point to systemic knowledge gaps, not isolated errors. One respondent described the issue succinctly as “a different understanding of what is reasonable and necessary,” highlighting the disconnect between lived need and administrative interpretation.
Parent carers of people with significant and lifelong disability should be recognised as long-term partners in sustaining appropriate supports, not approached with suspicion or treated as potential drivers of misuse. Families supporting people with complex needs have deep system knowledge and a strong incentive to ensure supports are appropriate, safe, and effective over the long term. Evidence shows that parent carers have played a key role in identifying and reporting fraudulent provider behaviour, contributing directly to prosecutions that protect public
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funds. This reality sits in contrast to policy settings that appear to prioritise restriction and surveillance of participants with the highest needs, rather than addressing the systemic failures in planning accuracy, provider oversight, and decision-making quality that are driving downstream costs.
4. Planning Practices, Reviews and the Cost of Getting It
Wrong
A recurring theme in our engagement with families is the perception that planners are not adequately supported or incentivised to get plans right at the initial decision-making stage. Families are frequently told that if a plan does not meet their needs, they can simply request a review or lodge an appeal.
This approach normalises inadequate planning and shifts the burden of correction onto families. Our survey data reflects this reality, with 45.5% of respondents identifying plan reviews as a key challenge with the NDIS. Families consistently report that this process is not experienced as a safeguard, but as an exhausting and adversarial process.
National appeals data confirm that this is not a marginal issue. In the year to June 2025, 7,132 new appeals were lodged—a 76% increase on the previous year—and 73% of cases resulted in the NDIA decision being overturned or varied. These figures point to a systemic failure in initial decision-making rather than opportunistic appeals by participants, a trend that appears to be worsening alongside financial sustainability measures such as plan reductions. Among our membership, 27.3% lodged an internal review (s100), with a further 9.1% progressing to an external appeal (AAT/ART). Resolution timeframes vary widely, with some cases exceeding the duration of the plan itself.
The financial implications of this approach are substantial. In 2024–25, the NDIA spent approximately $60.7 million on external law firms to manage appeals, compared with approximately $17.3 million in 2020–21. From the perspective of families, these funds would be far better invested in skilled planning, early decision quality, and genuine engagement with participant needs.
Several families responding to our survey reported choosing not to appeal decisions they disagreed with, despite clear unmet need, due to the emotional and psychological toll of the process. As one respondent explained, “I mostly feel as though I have PTSD from dealing with the NDIA.” This hidden cohort — those who disengage rather than appeal — is not captured in formal appeals data, yet represents a significant failure of administrative fairness and a serious long-term risk to people with disability. In effect, families withdraw from formal systems of support and oversight, maintaining a façade of coping while their person with disability makes do with sub-standard supports. Over time, this disengagement contributes to increased social Information – Friendship – Support 4
isolation, loss of skills, heightened anxiety, and greater long-term support needs, undermining both participant wellbeing and the stated sustainability objectives of the Scheme.
5. Price Guide Inconsistencies and Planner Discretion
Families have also raised serious concerns about inconsistencies between the NDIS Price Guide and planning decisions. In one example shared with our organisation, a family obtained a quote that aligned with the Price Guide but was refused by the planner not because the support wasn’t necessary, but on the basis that the cost was excessive. The only reason the quote appeared high was because the NDIA itself permits such rates.
This contradiction places families in an untenable position. Providers price services according to NDIA rules, yet families are penalised when those rules are applied. This undermines trust in the Scheme and contributes to unnecessary conflict, negotiation and review.
These experiences reinforce survey findings showing that 40.9% of respondents experienced funding inconsistencies or cuts, and 31.7% experienced unclear or delayed communication. Together, these issues contribute to a system that feels unpredictable and punitive rather than supportive.
6. Impact of Cost-Containment Measures on Safety,
Providers and Families
Recent cost-containment measures, including the application of 1:3 staffing ratios in day programs and supported living environments, have had significant real-world consequences for people with Cri du Chat syndrome. For individuals with complex behavioural, personal care, communication and sensory needs, these ratios are often unsafe and inappropriate.
Providers are frequently required to absorb unfunded support gaps in order to maintain participant safety, placing significant financial strain on services and undermining long-term viability. When providers are no longer able to sustain this risk and withdraw from supporting people with complex needs, families are left with limited or no alternative options. In practice, this results in increased reliance on unpaid family care while simultaneously forcing families back into the review and appeal cycle, further entrenching the very administrative and legal costs the Scheme is seeking to reduce.
7. Administrative Burden and the Impact on Carers
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While families overwhelmingly acknowledge that the NDIS has improved outcomes for their loved ones — including access to therapy, equipment and support workers — our survey shows that these benefits often come at the expense of significant administrative and emotional burden on parent carers.
Approximately 40% of respondents reported that their caring responsibilities very significantly impact their ability to work, study or participate socially. Over half reported that caring responsibilities frequently or always affect their ability to take time for themselves, with NDIS administration cited as a major contributor.
One respondent noted, “It is a lot of voluntary work for parents. I would spend at least a day a week on NDIS matters.” Others described the system as “complex and hard to understand,” requiring repeated proof of disability and continual revisiting of established needs.
Despite this burden, families expressed a clear vision for improvement: more knowledgeable planners, direct access to decision-makers, stable funding across plan cycles, and a genuine commitment to listening to the expertise of parents.
8. Acknowledging Upcoming Reforms
We are aware that the NDIA is progressing administrative reforms, including the introduction of ICAN support needs assessments and proposed changes to appeal rights. While these reforms may eventually alter aspects of planning and review processes, they are not yet implemented and are unlikely to provide immediate relief for families supporting people with Cri du Chat syndrome.
For our cohort, whose needs are lifelong and complex, the impacts of current administrative practices are being felt now. It is therefore essential that this Inquiry addresses existing planning culture, decision-making quality and cost-containment approaches, rather than deferring responsibility to future reforms.
9. Conclusion
The sustainability of the NDIS will not be achieved by restricting support to people with significant lifelong disability or by relying on reviews and appeals to correct poor planning. It will be achieved by investing in informed, skilled decision-making and by aligning administrative practice with the lived realities of participants and their families. Information – Friendship – Support 6
Our survey results demonstrate that current cost-cutting measures are misdirected. They are increasing administrative and legal expenditure, undermining safety, destabilising providers, and placing unsustainable burden on families.
People with Cri du Chat syndrome are not the cause of the Scheme’s financial challenges. They are a reminder of its purpose. We urge the Committee to recommend reforms that prioritise getting plans right the first time, valuing lived experience, and redirecting resources away from adversarial processes and toward effective administration. Information – Friendship – Support 7