National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2480
Draft Submission to Parliament on Proposed NDIS Policy Changes
Date of submission: 27 May 2026
To the Committee,
I am writing to express serious concerns about the proposed changes to the National Disability Insurance Scheme (NDIS), particularly those relating to:
• Eligibility decision‑making and the requirement for treatment to be “exhausted” before a condition is considered permanent.
• Community access supports and the risk of reduced funding for participants whose disabilities limit independent participation.
• The broader impact these changes may have on families, carers, and people with complex or fluctuating disabilities.
My husband is an NDIS participant, a Thalidomide Survivor and chronic pain sufferer. These changes could have profound consequences for our family and for many others in similar circumstances. Just the announcements have created distress for my husband who is now concerned that he may lose the supports he has become dependent on.
- Decision‑making about “permanency” and treatment requirements
The proposed shift toward requiring participants to demonstrate that all “reasonable treatments” have been attempted before a disability is considered permanent raises several concerns:
• Clinical appropriateness: Many disabilities do not improve with additional treatment, and requiring participants to “prove” this can delay essential supports. For my husbands secondary disabilities physio therapy is often recommended, however in all cases where we have tried this, they increase his pain until we stop. They are unable to account for the different structure of his body due to Thalidomide contenital deformities and the resulting arthritis.
• Decision authority: It is unclear who will determine what constitutes “reasonable” or “sufficient” treatment — treating clinicians, independent assessors, or NDIA delegates.
• Equity impacts: People in rural and regional areas, like us, often have limited access to specialists and treatment options. Travelling to Ipswich to obtain treatment requires I take time off work or additional support workers are needed. Requiring extensive treatment trials becomes a barrier rather than a safeguard.
My husband’s disability is permanent and well‑documented. We previously required ministerial intervention for him to be accepted into the Scheme. The idea that families may
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2480
again face such barriers is deeply distressing and that for his plan review this September we are back to having to prove his disability again. It would be more reasonable to identify the specific type of original assessments that will be reassessed.
- Community access is not optional, it is essential for mental health and safety and to prevent isolation.
Community access is often framed as “social participation,” but for many people with psychosocial or neurological disabilities, it is a core therapeutic support.
My husband cannot safely or confidently be in the community without support. This is not a preference, it is a functional reality. My husband struggles to maintain dignity and self confidence as he is physically limited. His quality of life would be reduced if he was forced to be house bound when I was working. Or if I reduced my work hours to provide this support instead.
Our circumstances illustrate the issue:
• I work full‑time, so he cannot go out during weekdays without funded support.
• By the time I return home, I have caring responsibilities and it is too late for meaningful community engagement.
• We live 40 minutes or more from most activities he can participate in, making informal support unrealistic.
• Group community access is often unsuitable because pain, sensory overload, or environmental triggers can force activities to end early or change suddenly.
Reducing community access funding would not encourage independence, it would increase isolation, worsen mental health, and remove one of the few protective factors he has.
- The proposed changes risk excluding the very people the NDIS was created to support.
Our experience shows how fragile access to the Scheme can be. If the proposed changes had been in place when we applied, my husband may never have been accepted, even though his disability is permanent, life‑limiting, and well‑supported by medical evidence. He doesn’t qualify for any payments due to my income which already provides some mental health challenges as he sees me working full time to cover all our expenses.
Then in addition any extra costs due to disability, like special accomodation, travel adjustments, and a larger car for the wheelchair, etc are my responsibility. This leaves my husband feeling like a “burden” to me, instructing me to holiday without him so “we spend less” and that our quality of life based on my income is compromised due to the additional costs for his disabilities.
If his disabilities are seen to not meet the new criteria, we can’t afford for me to work less hours, so I would have to do the support requirements after work. This would be an extra 2-
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2480
3 hours at least per weekday and Saturdays. I could not afford to pay support workers to continue.
We worry not only for ourselves but for:
• New applicants who may face higher evidentiary burdens
• People with psychosocial and physical disabilities who already struggle to have their needs recognised and have a sense of being a burden or isolation.
• Families in rural or semi-rural areas who cannot access the volume of treatment the new rules may require.
• Carers who may be forced to reduce work or leave employment entirely if supports are cut.
The NDIS was designed to provide reasonable and necessary supports, not to require families to repeatedly prove the permanence of conditions that are already well understood.
- Recommendations
I respectfully ask the Committee to consider the following:
• Clarify decision‑making authority: Permanency and treatment requirements should be determined by treating clinicians, not administrative interpretation.
• Protect community access funding: Community participation should remain recognised as essential for mental health, safety, and functional stability.
• Ensure fairness for rural and regional participants: Treatment‑based eligibility requirements must account for limited service availability and travel costs/ time.
• Avoid retraumatising families: No family should need ministerial intervention to access supports for a permanent disability.
Conclusion
The NDIS has been life‑changing for many Australians, including our family. But the proposed changes risk reversing that progress. They may unintentionally exclude people with genuine, permanent disabilities, particularly those with psychosocial conditions, chronic pain, or complex needs.
I urge the Committee to ensure that reforms strengthen the Scheme without creating new barriers for the people it was designed to support.
Thank you for considering this submission.