A Bill to change the National Disability Insurance Scheme has passed the Senate. This followed months of debate and a Senate inquiry. Thousands of people and organisations across Australia shared their views.
The Bill’s full name is the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. We refer to it as “the Bill” in this article.
Mito Foundation was proud to represent the mito community as part of this inquiry. Our CEO, Sean Murray, and Advocacy and Engagement Manager, Clare Stuart, spoke at the Committee’s hearing. They explained why NDIS reforms must work for people with rare, complex, and progressive disabilities.
Experiences shared by people in the mito community shaped what we told the inquiry. We also worked closely with other neurological and rare disease organisations.
You can watch their evidence to the Senate Committee on YouTube or read the official Hansard transcript.
Key points
- Mito Foundation represented the mito community at the Senate inquiry.
- The Bill has passed the Senate, but the changes will not all take effect straight away.
- The inquiry and debate in Parliament recognised many of the issues we raised. This led to changes to the Bill.
- Important concerns remain for people with rare, progressive, fluctuating and energy-limiting conditions.
- Our advocacy will continue as the reforms are designed and implemented.
- We thank every person in the mito community who shared their experience and strengthened our advocacy.
What we told the inquiry
Mito affects everyone differently. It can cause physical, neurological, cognitive and sensory disability. It can also cause significant fatigue and limit a person’s energy.
Symptoms can change from day to day. They may also change as the condition progresses. Sometimes a person’s support needs can increase quickly after illness or another major health event.
This means systems based on a standard or point-in-time view of disability may not reflect the reality of what living with mito is really like.
We raised several issues that are particularly important for our community.
We explained that NDIS assessments need to recognise changing capacity, energy limits and progressive disability. A person may be able to do an activity once. This does not mean they can do it safely or regularly. The activity may also have a significant impact on them afterwards.
We asked the NDIS to consider the full impact of mito. Mito can affect many parts of the body at the same time. A person’s support needs may come from the combined impact of several impairments. Looking at one symptom alone may not show their full needs.
We also called for reforms that:
- protect social and community participation supports
- recognise the difference between ordinary parenting and the extra disability-related care some children need
- help people get a timely reassessment when their condition changes
- put suitable safeguards around decisions made using automated systems
- make sure treatment does not stop a permanent disability being recognised
- make sure other suitable services are available before people are expected to use them instead of the NDIS.
These concerns also appeared in submissions Mito Foundation helped develop with Neurological Alliance Australia (NAA) and Genetic Alliance Australia (GAA). They were also raised by Rare Voices Australia and other organisations.
The NAA submission called for assessments to recognise changing capacity, energy limits and the effects of activity. It also called for stronger safeguards around automated decisions and timely reassessment. GAA called for safeguards for people with progressive, changing, multisystem and rare conditions.
Read more about NDIS changes: how we are speaking up for the mito community.
What changed through the inquiry and parliamentary process
The parliamentary process led to a number of amendments to the Bill.
These changes aim to strengthen protections around treatment requirements, automated decision-making and some funding reductions.
The Senate also agreed to further changes, including an escalation pathway. This pathway is intended to let participants with high support needs seek a plan variation in certain circumstances.
These changes are important, but they do not resolve every concern raised by Mito Foundation and others.
Many details still need to be worked out. These details will shape how the reforms affect people with mito. They include future rules, assessment processes and operational guidance.
The changes will happen in stages
Importantly, passage of the Bill does not mean that all of the changes apply immediately. We know major reforms can create uncertainty, particularly for people who rely on the NDIS for essential daily supports.
The reforms have different start dates and will be introduced in stages. Some parts begin shortly after Royal Assent. Others begin later in 2026, in 2027 or in 2028.
For current NDIS participants, the whole Scheme will not change on one date.
Mito Foundation will keep advocating for the reforms to reflect the realities of mito. This includes changing energy levels, progressive disability, rapid changes in support needs and the impact of multiple impairments.
Thank you to everyone who spoke up
Thousands of people and organisations contributed to the inquiry.
For many, taking part meant sharing deeply personal experiences. They spoke about disability, family life, caring responsibilities and navigating the NDIS.
We commend everyone who shared their experience and expertise. This includes people with disability, families, carers, advocates and organisations across Australia.
We also acknowledge the parliamentarians who considered this evidence closely. This includes Senator David Pocock and Australian Greens senators, who put forward dissenting views where they believed stronger protections were needed.
Most importantly, we thank the members of the mito community who trusted us with their stories.
Your experiences helped us explain what these reforms could mean in daily life. They showed what reform can mean for someone whose energy changes from one day to the next.
They also showed what it can mean for a child who needs much more care than another child their age, for a person whose condition suddenly gets worse, or for a family helping someone participate safely in their community.
Your voices made our evidence stronger.
Our advocacy continues
Passing legislation is not the end of the reform process. It is also not the end of our work.
Some of the most important decisions for people with mito will now be made as the reforms are implemented.
We will closely monitor:
- how assessments measure what a person can do and the support they need
- whether progressive and changing conditions are understood
- how automated processes are used
- how quickly plans respond when a person’s condition changes
- whether suitable services outside the NDIS are available before people are expected to rely on them.
Our goal is simple. People living with mito-related disability should be able to access the supports they need to live an ordinary life. They should be able to do this while managing the extraordinary challenges mito can create.
We will continue listening, working with others and speaking up for the mito community as these reforms are implemented.
As these reforms continue to roll out, Mito Foundation’s free, independent NDIS Navigation Service is available to help people living with mito understand their options and navigate the NDIS.
