Published 24 April 2026
We know many people in our community will be feeling anxious right now. If you rely on the NDIS, or have been trying to access it, this week’s announcement of major proposed changes is understandably unsettling. We want you to know we are paying close attention, and we are not standing back.
The proposed changes are significant. They cover eligibility, functional capacity assessments, reasonable and necessary supports, plan reassessments, provider regulation, support coordination, and community participation. The full implications are still becoming clear.
What we can say is this: Emerge Australia has serious concerns about what these changes could mean for people with ME/CFS, long COVID and other fluctuating, energy-limiting conditions. Many in our community have already been denied NDIS access because disability systems fail to recognise, understand or cater to conditions that fluctuate and are invisible.
The Hon. Mark Butler, Minister for Health, Disability and Ageing, described the NDIS as “the only port in a storm for many Australians.” For people with ME/CFS and long COVID, that is not rhetoric. It is lived experience. Which is why the central question must be answered before any changes take effect: if people are moved away from the NDIS, what will be there instead? And for those who don’t meet the requirements but still live with significant needs, what supports will exist to prevent their energy limiting condition from worsening causing increased disability?
We will not accept reform that simply removes people from one system without ensuring appropriate alternatives are in place first.
We will be advocating for reform that recognises fluctuating disability, assesses energy limiting and fluctuating functional capacity fairly, protects essential supports, and is developed in genuine partnership with the disability community.
You are not navigating this alone.
