Submission 3002 — Name Withheld — NDIS Future Generations Bill

SUBMISSION

NDIS Amendment Bill — Impacts on Participants with Complex and Rare Neurological

Disabilities

To: Members of the Community Affairs Legislation Committee Parliament of Australia Canberra

ACT 2600

Subject: Submission on the NDIS Amendment Bill — Impact on People with Complex Disabilities

Purpose

To outline key concerns regarding the NDIS Amendment Bill, particularly its impact on participants with complex and rare neurological disabilities, and to highlight issues with the Government’s use of integrity data to justify structural changes.

Submission

Dear Members,

I am writing to raise serious concerns about the NDIS Amendment Bill and the way it is being implemented. I am an NDIS participant living with Agenesis of the Corpus Callosum (ACC), Asperger’s, PTSD, chronic pain, muscle atrophy, sight and hearing impairments, chronic sleep disorder, interoceptive difficulties, and hand–eye coordination impairments. Several of these conditions have degenerative impacts over time.

Many of these disabilities are not recognised or considered in my NDIS plan. I use the health system appropriately wherever possible, and I actively engage in every available strategy to prevent deterioration. These are not separate issues; they are interconnected functional impacts of a congenital and rare neurological condition. Attempts to categorise me under a single label place me at significant risk. My daily safety and independence depend on the NDIS.

It appears that the current amendments risk returning people with disability to the limbo that existed before the NDIS, rather than following the Review’s recommendation to build a unified system of support, centred on the whole person, with active government stewardship to ensure markets are safe, efficient, and effective.

I have personally experienced fraud and physical abuse by providers. When I reported these incidents, the internal reporting system failed to act, leaving other participants at risk. I acknowledge that several Royal Commission recommendations implemented in 2025, and that the Government has agreed in principle to establishing an independent reporting body. However, this body does not yet exist. Granting the NDIS Commission additional temporary powers must be done in a way that improves safety, service quality, and risk-proportionate regulation—not in a way that disadvantages participants or reduces access to essential supports.

Understanding ACC: Why It Cannot Be Treated as Secondary or Ignored

Before addressing the broader policy issues, it is important to explain the neurological condition that underpins most of my functional impairments. In my NDIS records, Agenesis of the Corpus

Callosum (ACC) is listed only as a secondary condition, yet it is the congenital brain difference that drives the majority of my daily challenges. ACC is equally as relevant as the listed primary disability—if not more important—and it cannot be separated into isolated categories or ignored simply because it is not marked as “primary”. Its impacts are whole-brain, multi-system, and interconnected, and understanding this is essential to understanding why the Amendment Bill places me at such significant risk.

ACC affects:

• cognition and processing speed

• motor coordination and balance

• hand–eye coordination

• sensory processing and sensory integration

• emotional regulation and executive functioning

• sleep regulation and circadian rhythm stability

• interoception (awareness of internal bodily states) ACC is also frequently accompanied by:

• seizures and epilepsy

• endocrine and hormonal irregularities

• autonomic dysfunction

• gastrointestinal issues

• chronic pain and muscle weakness or atrophy

• hearing and vision impairments

• developmental coordination disorder

• sleep disorders These impacts are interconnected, not separate. They interact in ways that amplify functional impairment. This is why ACC cannot be unrecognised as a “secondary” or reduced to a single “primary disability” without causing harm.

I understand the difference between medical diagnosis and NDIS functional impact. ACC is a whole-brain developmental condition with multi-system consequences. The functional impacts I experience are directly caused by the neurological condition. Attempting to separate them into unrelated categories, or forcing them into a single label, is clinically inaccurate and functionally unsafe.

The NDIS’s current practice of assigning a “primary disability” without participant involvement does not reflect the reality of rare neurological conditions like ACC. It risks placing me in an inappropriate cohort under the Amendment Bill, resulting in the wrong supports, the wrong budget, and potentially the loss of access to the scheme.

A whole-person approach is not optional for people with ACC—it is the only accurate and safe way to assess functional need.

Daily Living and Community Supports Must Reflect Individual Need

These interconnected impacts shape every aspect of my daily functioning, which is why the supports I receive must be flexible, individualised, and responsive to my actual needs.

My need for daily living and community participation supports is essential, not optional. These supports allow me to function safely, maintain stability, and participate in society. The direction of reform toward “approved activities” or group-based programs does not reflect the reality of my needs or the needs of many people with complex disabilities.

Group activities are often inappropriate for people with rare neurological conditions such as ACC, and they cannot replace the individualised one-to-one support required for daily living. Any move toward a restricted list of activities or standardised programs would place me at significant risk and contradict the core purpose of the NDIS: individualised support based on functional need.

1. NDIA assigning my “primary disability” without my involvement Despite the complexity of my condition and the essential nature of my supports, the NDIA’s current processes do not reflect this reality.

The NDIA has repeatedly assigned a “primary disability” to me without my input, even when I provide specialist evidence. This contradicts the Independent Review of the NDIS (2023), which recommends:

• a whole-person approach
• recognition of multiple interacting disabilities
• participant involvement in decision-making By excluding me from this decision, the NDIA fails to consider the full complexity of my disability profile. This misrepresents my functional needs and places me at risk of being assigned to an inappropriate cohort under the Amendment Bill, or even being denied access to the scheme.

2. My disabilities are complex, interacting, and cannot be reduced to one label This problem is made worse by the fact that my disabilities do not exist in isolation but interact in ways that significantly increase my functional impairment.

ACC affects whole-brain communication, motor coordination, sensory processing, sleep regulation, and interoception. Autism, PTSD, chronic pain, muscle atrophy, sensory impairments, and sleep disorder compound these impacts.

In cognitive testing, I scored in the 3rd percentile, meaning 97% of people my age performed better. This is only one part of a much broader disability profile. Reducing this complexity to a single label is clinically inaccurate and functionally harmful.

3. The Government’s “10% fraud” narrative is misleading and unsupported by evidence While participants like me are being asked to justify our most basic supports, the public narrative around the NDIS has shifted toward claims of widespread fraud — claims that are not supported by evidence.

Evidence presented to the Integrity Transformation inquiry shows:

• The NDIS does not measure fraud separately.

• The widely quoted 8.3% figure is not fraud — it is “integrity leakage”, which includes:

• administrative error

• unverified claims

• non-compliance

• system design failures

• and some fraud (unknown amount)

• NDIA integrity evidence stated that fraud across all Commonwealth programs is well under 1% of expenditure.

• There is no evidence that NDIS fraud is higher than other programs. In the absence of any evidence to the contrary, the only reasonable assumption is that any true NDIS fraud sits within the same low range as other Commonwealth programs — well under 1%.

Treating the entire 8.3–10% figure as fraud is misleading and risks driving policy decisions that target participants instead of addressing genuine fraud.

4. Selective use of the NDIS Review is a serious concern These misleading fraud claims appear to be influencing which parts of the NDIS Review are being prioritised, often to the detriment of participants.

The Government appears to be using the NDIS Review selectively:

• adopting the parts that reduce budgets
• ignoring the parts that protect participants The Review’s most important recommendations — whole-person assessment, participant voice, recognition of complex disability, and foundational supports — are being overlooked.

This selective implementation undermines the intent of the Review and places people like me at significant risk.

5. What I am asking Parliament to do For these reasons, I am asking Parliament to ensure that the reforms proceed in a way that protects participants rather than exposing us to greater risk.

I respectfully urge you to ensure that:

• The NDIA cannot assign a primary disability without participant involvement.

• The whole-person approach recommended by the Independent Review is implemented in full.

• Cohort-based budgets do not override individual functional needs.

• Foundational supports are established before any tightening of access, and responsibility remains with the NDIS where no alternatives exist.

• Fraud and other integrity issues are addressed in a way that does not reduce, restrict, or undermine vital supports for participants.

• Integrity measures must target fraud, provider misconduct, and system design failures, not the supports that keep people with complex disabilities safe.

• Integrity reform must not be used as a justification for cutting participant budgets or limiting access.

• Amendments do not remove the core purpose of the NDIS: individualised support based on functional need.

The NDIS was built on principles of choice, control, and individualised support. These principles must not be lost.

Key Concerns (Summary)

1. Misclassification of Complex Disabilities

• NDIA assigns a “primary disability” without participant involvement.
• Contradicts the Independent Review’s recommendations.
• Rare neurological conditions like ACC cannot be reduced to a single label.
• Misclassification risks incorrect cohorts, unsafe supports, and loss of access.

2. Misuse of Fraud Statistics

• Government repeatedly cites a “10% fraud problem”.
• Inquiry evidence shows the NDIS does not measure fraud separately.
• The 8.3% figure is integrity leakage, not fraud.
• Fraud across all Commonwealth programs is well under 1%.
• Inflated figures risk targeting participants instead of genuine fraud.

3. Selective Implementation of the NDIS Review

• Cost-reduction recommendations adopted; protective recommendations ignored.
• Undermines the intent of the Review.
• Increases risk for vulnerable participants.

Implications

Taken together, these issues create significant risks for people with complex and rare neurological disabilities.

• Participants with rare neurological conditions such as ACC face heightened risk of misclassification, inappropriate cohorts, and reduced supports.

• Misuse of integrity data may justify structural changes that harm participants rather than addressing provider misconduct or system failures.

• Without safeguards, the Bill may erode the core principles of the NDIS: choice, control, and individualised support.

Closing Statement

Thank you for your time and consideration. I offer this submission as one voice among many, all expressing a shared concern: the NDIS cannot be strengthened by undermining the very principles it was created to uphold.