NDIS changes: how we are speaking up for the mito community

One proposed change could affect how the NDIS decides whether a person's disability is permanent.

This is important for people living with mito. Treatments and therapies can help manage symptoms, maintain function and improve quality of life. However, they do not cure mito.

We are concerned that people could face barriers to support simply because a treatment exists. People should not be expected to try every possible treatment before they can access the support they need.

We believe the NDIS should recognise that treatment can help manage a condition without removing the impact of disability.

Mito affects everyone differently. Symptoms can vary from day to day and may change as the condition progresses.

This can make it difficult for a single assessment or appointment to capture the full impact of living with mito.

We want NDIS assessments and planning processes to reflect the reality of living with a condition that can change over time and affect people in different ways.

Support needs can change, and the NDIS needs to recognise this.

The Government has said that in the future, some people may receive more support through services outside the NDIS. These are often called foundational supports.

In principle, stronger support outside the NDIS could help people access help earlier and more easily.

However, these services need to be available before people are expected to rely on them. Many people with mito already face challenges accessing health, education and community services.

We believe no one should lose access to support before suitable alternatives are in place.

For many people with mito, support needs change over time.

Sometimes these changes happen gradually. Sometimes they happen suddenly after an illness or another major health event.

When a person's needs change, their support should be able to change too.

We believe people with mito need a clear and accessible way to request a review when their current support no longer meets their needs.

Mito can affect many parts of the body and often causes a range of symptoms at the same time.

The combined impact of fatigue, muscle weakness, vision or hearing loss, cognitive challenges and other symptoms can affect everyday life in significant ways.

We want the NDIS to look at the whole impact of mito, rather than considering each symptom in isolation.

People should be assessed as a whole person, with support decisions reflecting their overall needs and circumstances.