1. My Relationship to the NDIS

I am a person with disability and an NDIS participant. I have been a participant for several years. I also work as a support coordinator, supporting other NDIS participants across regional North Queensland. I speak from both lived experience and professional insight.

2. My Disability and Support Needs

I have a permanent acquired brain injury from a right MCA stroke and hypoxic event in 2005. I also have post-stroke epilepsy with a structural brain lesion (right MCA encephalomalacia).

In April 2026, I experienced status epilepticus — a prolonged, life-threatening seizure. I was intubated, spent two days in ICU, and was hospitalised for several days. My son found me. I do not remember it, but he does.

The NDIS funds the supports that currently keep me safe, keep me working, and keep me alive for my son while I appear to be functional. These include:

• A seizure monitor – to detect convulsive seizures at night and when I am riding my bike with my son
• Speech-to-text software (Dragon) – because I cannot type for long periods with my left-hand weakness, and my right hand is at risk of overuse
• Consumables (e.g., Second Skin) – because I have no sensation in my left hand and can injure myself without knowing
• Occupational therapy and hand therapy – to maintain function, prevent deterioration, and adapt my environment

These are not luxuries. They are the difference between safety and vulnerability, between work and unemployment, between being a present father and my son growing up without me.

3. My Overall Position on the Bill

I oppose the Bill in its current form.

I understand the need for sustainability. But the proposed changes go too far, move too fast, and risk stripping away the supports that people with disability rely on to live ordinary lives.

My comments below address specific provisions of the Bill and explain how they would affect me and others in my situation.

4. Comments on Specific Provisions of the Bill

Schedule 1 Part 4 – Unreviewable Ministerial Power to Reduce Funding

What the provision does: This part allows the Minister to reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged.

My comment: I am deeply concerned about this provision. My NDIS funding for community participation and capacity building supports could be cut without warning — and I would have no right to appeal.

I rely on my occupational therapy and hand therapy to maintain my independence. If those supports are reduced, my left hand will deteriorate faster. I will lose function I cannot regain.

I also rely on unspent funds to save for high-cost assistive technology (e.g., my seizure monitor). If unspent funds no longer carry over (Schedule 1 Part 5), I will never be able to afford the equipment I need to stay safe and independent.

Recommendation: Remove the unreviewable ministerial power to reduce funding. Require that unspent funds carry over at plan renewal for participants saving for high-cost assistive technology.

Schedule 1 Parts 8 and 9 – Eligibility Thresholds Left to Ministerial Instruments

What the provision does: These parts allow the Minister to change who gets NDIS support through an instrument, without parliamentary scrutiny. The rules that will determine critical eligibility thresholds have not yet been written.

My comment: I am a current participant with a permanent, well-documented disability. But I am afraid that

these changes could be used to reassess me under stricter rules, potentially leading to reduced funding or even removal from the scheme.

I have an invisible disability. On a good day, I might seem “too functional.” But my bad days are real. I have seizures at night. I have left-hand weakness. I have cognitive slowing. A count-in-time assessment (such as the proposed I-CAN tool) would not capture the full picture of my disability.

Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny. Ensure that functional capacity assessments account for fluctuating and invisible disability.

Schedule 1 Part 3 – Removal of Whole-of-Person Assessment

What the provision does: This part removes whole-of-person assessment and replaces it with single eligible impairment consideration. The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will also be removed.

My comment: My disability cannot be reduced to a single impairment. My brain injury affects my cognition, my left hand, my epilepsy, and my daily functioning in ways that interact with each other. A single-impairment assessment would not capture my real support needs.

Whole-of-person assessment is essential for people with complex, multi-system disabilities like mine. Removing it would lead to underfunding and unsafe support plans.

Recommendation: Retain whole-of-person assessment and ensure that all impairments, environmental factors, and individual circumstances are considered when assessing support needs.

Schedule 1 Part 2 – Restrictions on Reassessment Requests

What the provision does: This part restricts when participants can request a reassessment of their plan.

My comment: My disability fluctuates. My seizure control is still stabilising after a life-threatening event in April 2026. If my needs change – if I have another breakthrough seizure or my cognitive function declines – I need to be able to request a reassessment quickly.

Restricting reassessment requests would mean I could be stuck with an inadequate plan while my needs increase. That puts my safety at risk.

Recommendation: Preserve access to unscheduled reassessments for participants with fluctuating or degenerative conditions.

Schedule 1 Part 5 – Automatic Plan Renewals Without Review Rights

What the provision does: This part allows for automatic plan renewals without review rights.

My comment: If my plan is automatically renewed without review, I could lose funding for essential supports without ever having the chance to challenge the decision.

I need my plan to reflect my current needs – not a snapshot from 12 months ago. Automatic renewals without review rights take away my voice and my agency.

Recommendation: Ensure that all plan renewals include the right to a review and that participants are notified of any changes before they take effect.

5. Key Themes for Consideration

Theme 1: Protecting Existing Participants

The Bill does not adequately protect existing participants. I am a current participant with a permanent disability. I should not have to prove my eligibility over and over again. I should not have to fight my own government for the supports I rely on.

Recommendation: Introduce a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision.

Theme 2: Co-Design with People with Disability

The consultation period for the Amendment Bill was only two weeks – insufficient for people with disability to meaningfully participate. The Bill itself was developed without genuine co-design with people who actually use the NDIS.

Recommendation: Ensure that any changes to the NDIS are co-designed with people with disability – not just consulted after decisions are made.

Theme 3: Invisible Disability and Fluctuating Needs

Theme 4: Unspent Funds and Assistive Technology

The removal of unspent fund carry-over (Schedule 1 Part 5) will prevent participants from saving for high-cost assistive technology. I need to save for my seizure monitor. Without carry-over, I cannot afford it.

Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost assistive technology, continue plan roll overs

Theme 5: Community Participation and Capacity Building Cuts

From 1 October 2026, funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent. These cuts will take effect before Foundational Supports are fully operational.

Recommendation: No reductions to community participation or capacity building supports should take effect until Foundational Supports are fully operational, adequately funded, and demonstrably able to meet the needs of those who will lose NDIS supports.

6. My Personal Experience

On 21 April 2026, I had a seizure that nearly killed me. Status epilepticus. Intubated. ICU. My son found me. I do not remember it. But he does.

The NDIS helps me stay alive for him.

With my NDIS funding, I can purchase a seizure monitor. It will detect a seizure at night or when I am riding my bike with my son, and send an alert to my family. Without it, a seizure could go unnoticed – and I could die.

I can purchase speech-to-text software. I cannot type for long periods because my left hand does not work and my right hand is at risk of overuse. Without it, my work as a support coordinator would become exhausting and painful.

I can purchase basic consumables like Second Skin for injuries I do not feel because of my left-hand sensory loss. Small cuts can become infections. Infections can become hospital visits.

Page 6

These are not luxuries. This is the difference between being safe and being vulnerable. Between working and not working. Between being a dad and my son growing up without me.

I cannot imagine what it would have been like if I had died next to my son that day. The NDIS helps me stay alive next to him instead.

The NDS does not fund a luxurious life. It funds an ordinary life. Getting out of bed. Going to work. Stayin9 alive for my son.

7. Recommendations

   Recommendation                    Why
                    No current participant should be cut off entirely. Existing
   

8. Protect existing participants participants should be protected from changes that would remove their supports without a clear transition pathway.

9. Co-design with people with People with disability must be equal partners in shaping disability NDIS reforms – not consulted after decisions are made.

10. Allow unspent funds to carry Participants must be able to save for high-cost assistive over technology.

11. Guarantee independent Before any funding reduction or exit decision, review rights participants must have the right to an independent review.

12. No cuts to community These cuts should not take effect until Foundational participation or capacity Supports are fully operational and demonstrably able to building meet participants’ needs.

13. Ensure assessments account Assessments must capture the full picture of a for invisible and fluctuating participant’s disability, not just presentation on a single disability day.

14. Conclusion

I have lived with an acquired brain injury and epilepsy for 21 years. I have experienced the difference the NDS makes. Before the NDIS, I was part of the old disability system – fragmented, underfunded, and isolating. The NDIS gave me choice, control, and hope.

The NDIS does not fund a luxurious life. It funds an ordinary one. Getting out of bed. Going to work. Stayin9 alive for my son.

I ask the committee to consider the voices of people like me – people with invisible disabilities, fluctuating needs, and a permanent reliance on the supports that keep us safe and independent.

Please do not let these reforms push us back into the shadows.

Yours sincerely,