Many people with mitochondrial disease (mito) need disability-related supports, but accessing them isn’t always easy. That’s why Mito Foundation advocates for improved access, particularly during periods of change to the National Disability Insurance Scheme (NDIS).
NDIS consultation on new framework planning
March 2026
Mito Foundation recently provided a submission on the proposed NDIS New Framework Planning Rules. These reforms may change how support needs are assessed and how participant budgets are determined. In our submission, we raised concerns about the potential impact on people living with rare and progressive conditions such as mitochondrial disease.
We recommended safeguards including:
- staged implementation,
- recognition of multiple impairments, and,
- clearer information about how participant budgets will be calculated.
Disability representative organisations across Australia have also called for clear and complete consultation on the reforms before they are implemented.
Mito Foundation will continue to advocate for planning processes that reflect the complexity and progression of mitochondrial disease.
How we're helping
Alongside our NDIS Navigation Service, we’re pushing for a more equitable system by raising your unique challenges with NDIS decision makers.
Our work includes:
- Representing the mito community through national working groups on rare and progressive conditions including the NDIS Neurodegenerative, Palliative Care and Rare Disease Working Group.
- Playing an active role in the Rare Disease Disability Network, contributing to shared advocacy across rare conditions.
- Participating in national disability reform through the Rare Disease Disability Projects Stakeholder Reference Group.
- Leading the RISE Project (Rare and progressive disability: Inclusive support and empowerment), as part of a national initiative with Rare Voices Australia.
- Submitting expert advice and evidence to make sure the voices of the mito community are heard (check them out here).
- Collaborating with allies like Neurological Alliance Australia and Rare Voices Australia.
One recent success has been ensuring new NDIS guidelines include the use of therapies like exercise to maintain existing capacity and to slow progression. That’s a win for people living with mito.
What we're pushing for
We’re advocating for improvements in areas you’ve told us matter to you, including:
- Improving the consistency of decisions made about who in the mito community can access the NDIS.
- New resources for NDIS decision makers about mitochondrial disease.
- More appropriate supports for people with energy limitations and fatigue.
- Use of genomic test results in NDIS decisions
- Developing foundational supports, including the new Thriving Kids program.
- How the new disability navigation service should be designed.
Your voice matters
The most powerful way we can advocate is by sharing your stories, both the wins and the challenges. We do this through the Mito Stories Project and the experiences you share with our NDIS Navigation Service.
If you’ve had an experience with the NDIS, good or bad, we want to hear from you.
Get in touch with our Advocacy and Engagement team by emailing advocacy@mito.org.au. Your story could help drive the next big change.
