Submission 1577

Submission to the Senate Standing Committee on Community Affairs

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted anonymously

I welcome the opportunity to make a submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am making this submission anonymously because I am afraid of the consequences of speaking openly. I am both an NDIS participant and the parent of a participant. While I am prepared to advocate for myself, I am deeply concerned about possible impacts on my son if I publicly criticise the system. No parent should feel afraid that speaking up for their child could place their supports at risk.

This Bill is being presented as reform, but from my lived experience it feels like people with disability and their families are being asked to carry the burden of “saving” the system through reduced supports, narrower eligibility, and fewer rights. These changes will not just affect budgets. They will affect people’s safety, mental health, participation, relationships, dignity and lives.

Parliamentary Scrutiny and Transparency

I am already under immense pressure caring for myself and my son. I have had to reduce my own work from three days to two, resulting in a significant loss of income that affects every aspect of life, including housing security, cost of living and the ability to participate in ordinary community activities.

I experience burnout, mental health struggles, emotional dysregulation and repeated meltdowns. This impacts my relationship with my son because he internalises what is happening and believes he is the cause of my distress. He withdraws emotionally, becomes isolated and disengages from the community. We both become isolated because everyday activities become overwhelming.

Trying to engage with major NDIS reforms while already surviving under this level of pressure is incredibly difficult. People with disability deserve consultation processes that are accessible, trauma-informed and realistic.

Key Decisions Left to Ministerial Instruments, Not Law

One of the most concerning aspects of this Bill is the ability for Ministers to make major changes to eligibility and funding through instruments without full parliamentary scrutiny.

The NDIA already feels unpredictable and inconsistent. Expanding these powers without stronger accountability creates enormous fear and uncertainty. People with

Submission 1577

disability should not have to live wondering whether the supports they rely on could suddenly disappear because of a policy instrument signed without proper debate or oversight.

Existing Participants Face Narrower Criteria and Fewer Rights to Challenge Decisions

The proposal to reduce review rights and restrict reassessment pathways is terrifying.

During one reassessment process, a planner refused to hold a proper conversation and simply stated that the plan had already been completed and they would tell me what was in it. I was left completely distressed and inconsolable after that interaction. It reinforced how powerless participants can feel within the system.

Our previous reassessment resulted in a worse outcome than the plan we had before. Based on that experience, we honestly felt we would have been better off not requesting reassessment at all. The idea that reassessment requests could become even harder under unclear criteria, while review rights are removed, creates real fear and hopelessness.

There must be safeguards against arbitrary or uninformed decision-making. Without review rights, participants will have no meaningful recourse when decisions place them at risk.

These are not abstract concerns. When people lose support, lose hope and feel trapped without options, there is a genuine risk of severe mental health deterioration and suicide. Decision-makers need to understand the seriousness of what is being proposed.

Unreviewable Ministerial Power to Cut Funding Across Support Categories

We have never been in a position where we could save large amounts of unspent funding because our supports have always been tightly constrained.

My son’s community participation funding is already extremely limited. At school he had structured opportunities for social connection. As an adult, he now relies on funded supports to recreate those opportunities and maintain relationships and confidence in the community.

His plan included only one hour per week for social and community participation and three hours for group activities. When we explored local day programs, many environments were overwhelming and unsuitable for his needs.

Minimal funding creates exclusion. Providers prioritise participants who can attend full days because that is financially sustainable. People with smaller allocations become unintentionally excluded from programs and social opportunities.

Submission 1577

If funding is reduced further, people who currently attend programs several times a week may only be able to attend once every fortnight or not at all. That means losing friendships, structure, confidence and connection to community.

This will deepen isolation and reduce quality of life for many people with disability.

Requirement to Exhaust Treatment Options Before Eligibility

The proposal requiring people to exhaust treatment options before accessing support is deeply concerning.

Disability is not simple or linear. Many people live with trauma, psychosocial disability, autism, fluctuating conditions and multiple overlapping impairments.

The current system already fails to understand this complexity. Initially, we provided a diagnostic letter from a paediatrician, which was rejected because we were told the diagnosis needed to come from a neurologist. We then followed that direction and obtained a neurologist’s letter confirming the diagnosis, only for that to also be rejected because the condition, FND, was considered “unstable” due to being functional and fluctuating in nature.

Even when we followed exactly what was requested, another reason was found to reject the diagnosis. It feels like the goalposts constantly move. This creates enormous stress and uncertainty for families trying to access support in good faith. It also demonstrates how nuanced and inconsistent the current rules already are, yet this Bill would give even broader powers to change eligibility rules, assessment criteria and funding decisions without proper scrutiny.

Removing whole-person assessment will make this worse. People cannot be separated into neat boxes. Someone with autism may technically be verbal but still require psychological support for emotional regulation, trauma or shutdowns. I personally experience periods of mutism related to psychological distress and regulation difficulties, yet psychology supports were denied because they were deemed unrelated to my primary diagnosis despite multiple reports documenting interconnected needs.

The system currently funds supports such as speech therapy and occupational therapy while excluding psychological supports that are equally essential for functioning and participation.

That approach ignores reality.

People are whole human beings with interconnected needs. Reducing people to a single impairment category will inevitably lead to harm.

Unvalidated Functional Capacity Assessment Tool Risks Misidentifying Need

I have serious concerns regarding the proposed I-CAN assessment tool.

Submission 1577

A checklist or point-in-time assessment cannot accurately capture the complexity of disability, especially for people with fluctuating, episodic or trauma-related conditions.

Question wording matters. Assessor skill matters. The ability to probe, rephrase and understand context matters.

Many people can appear capable in a brief assessment setting while struggling significantly in daily life. A rigid checklist approach risks underestimating support needs because it does not capture exhaustion, masking, shutdowns, trauma responses, variability or worst-day functioning.

Occupational therapists often understand this nuance and adapt questioning styles to gather accurate information. By contrast, assessors who simply read questions and tick boxes may entirely miss critical aspects of a person’s disability.

The proposed approach also raises concerns regarding cultural safety and appropriateness for First Nations people and other communities whose communication styles and lived experiences may not align with rigid assessment frameworks.

If assessments fail to identify the full functional impact of disability, participants may be found ineligible or receive plans that do not reflect reality. The consequences of under-identification are severe because people are then left without the supports required to live safely and participate in society.

Supports Cut Before Replacement Systems Exist

The proposed reduction in community participation and daily living supports before Foundational Supports are operational will be devastating.

Without supports, my son would likely isolate himself completely and remain in his room. Motivation and confidence would disappear.

At one point, a planner proudly allocated employment support hours while failing to provide adequate daily living supports such as assistance with showering, dressing and preparing for the day. Without those foundational supports, employment support becomes meaningless because a person cannot realistically access or sustain work.

Community participation and daily living supports are not luxuries. They are what allow people to build confidence, communicate, socialise, learn workplace skills and participate in society.

Removing these supports removes people’s opportunity to become fully participating members of the community.

It also undermines employment outcomes for people who are already working and contributing. In previous work within disability employment services, I saw firsthand that people with disability can gain and maintain long-term employment when appropriate supports are available.

Submission 1577

If funding and training for supports decline, those opportunities will disappear.

Final Comments

How much blood are you prepared to have on your hands if this goes through?