National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1683
Submission Regarding Proposed Changes to the NDIS Bill To whom it may concern,
I write to express concern regarding the proposed changes to the National Disability Insurance Scheme (NDIS) and the potential impact these changes may have on people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), long COVID, and other energy-limiting chronic conditions.
Many people within our community are deeply worried about how the proposed amendments may affect their ability to access and retain essential disability supports. While it is understood that the Bill does not explicitly exclude people with ME/CFS or chronic illness from the NDIS, there remains significant uncertainty regarding how the proposed changes will be interpreted and implemented in practice.
In particular, concerns exist around proposed changes relating to:
• Functional capacity assessments • Definitions of permanence • Plan reassessments • Determination of reasonable and necessary supports
People living with ME/CFS, long COVID, and associated conditions often experience fluctuating symptoms, post-exertional malaise, severe fatigue, cognitive dysfunction, and reduced capacity to sustain everyday activities. These conditions are complex, frequently misunderstood, and difficult to assess through traditional disability frameworks.
Without clear safeguards and appropriate clinical understanding embedded within the legislation and its implementation, there is a serious risk that people with energy-limiting conditions could face increased barriers in demonstrating their disability support needs.
There is particular concern that:
• Assessments may fail to properly recognise fluctuating disability and post-exertional symptom exacerbation • Functional capacity evaluations may unintentionally worsen health outcomes if not conducted appropriately • Increased reassessment requirements may place additional physical, cognitive, emotional, and financial burdens on participants • Narrow interpretations of “permanence” may disadvantage people whose conditions are chronic and disabling despite variable presentation
It is essential that any reforms to the NDIS uphold fairness, accessibility, and equity for people with invisible and episodic disabilities.
I respectfully urge Parliament and the NDIA to:
- Ensure people with ME/CFS, long COVID, and similar energy-limiting conditions are explicitly considered in the development and implementation of any reforms
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1683
- Introduce clear safeguards to prevent inappropriate exclusion or reduction of supports for people with fluctuating disabilities
- Ensure assessors and decision-makers receive appropriate education regarding ME/CFS, long COVID, post-exertional malaise, and related conditions
- Consult directly with affected communities, advocacy organisations, and medical experts before implementing changes
- Ensure that reassessment processes do not create additional harm or barriers for participants with severe chronic illness
People living with ME/CFS and long COVID already face significant challenges in accessing healthcare, support services, employment, and social participation. The NDIS provides essential support that enables many individuals to maintain dignity, independence, and quality of life.
I ask that Parliament carefully consider the unintended consequences these proposed changes may have on vulnerable Australians living with energy-limiting chronic illnesses.
Thank you for the opportunity to provide this submission.
Sincerely,