Last week, the final report from the NDIS Review was published. The Review heard from more than 10,000 people and organisations. This included Mito Foundation, through our work with Rare Voices Australia. The Review has communicated a vision for a unified system of supports for people with a disability. It has made 26 recommendations and identified 139 actions. You can read the final report here, an easy read version here, and an overview of the Review here.

There are several parts of the review that give us hope and some parts that we’re more cautious about.

Many members of the mito community have told us how much the NDIS has positively transformed their lives. Others have shared the difficulties they have had in getting the supports they need. Because of this, we value the important role of the NDIS in improving the lives of people impacted by mito and we welcome the Review.

Mito Foundation will continue to provide support to the mito community and to advocate for improved disability support.

4 things in the review that give us hope:

  • The focus on support outside the NDIS. Foundational supports could help mito community members to get the support they need without having to be an NDIS participant. These foundational supports could include help at home and allied health services. We also hope this change removes the barrier that some people face in accessing hospital-based specialist allied health services. At the moment, some of these services will not see people who have an NDIS plan. This stops mito community members from seeing specialist dieticians and physiotherapists who know about mito.
  • The move away from relying on a medical diagnosis to decide if a person can become an NDIS participant. We know this has been a real challenge for many people with mito. We have seen how important good quality functional assessments are and are encourage by the Review including acceptance that the costs of these should not be paid by potential participants. We look forward to a scheme that focuses on the ways that disability impacts people’s lives.
  • The introduction of Navigators, and making them available to all people with a disability. When we talked to the mito community about their NDIS experiences in 2021, it was clear that navigating the system was a major challenge. This led us to create our NDIS Navigator service. We hope that the new NDIS Navigators will be as amazing as Lauren and can connect people to the support they need.
  • The overall focus on flexibility and acknowledgement that some conditions are episodic or fluctuating. We know that many mito community members have needs that change over time. This can be caused by the progression of their mito symptoms or by shorter periods of time where they require more support.

4 things in the review that we’re more cautious about:

  • Changing a large system is difficult. The Review has recommended many changes to how the NDIS works. The Review has also recommended changes to supports available in other systems such as housing, education and health. This will require the State and Territory Governments to work together with the Australian Government to ensure that support is available throughout this time of change.
  • A new needs assessment process may still cause people to miss out on support they need. We need to make sure that people involved in assessments and decision making know enough about mito to make fair decisions.
  • Requiring all providers to be registered. We are supportive of changes that improve quality and safety. But we want to make sure that these changes do not reduce the choice and control that people have when they choose their providers and supports.
  • Having enough workers with the skills they need. The changes that the Review has asked for will create new demands on a workforce that is already under pressure. The Review recommends the Australian Government takes the lead in addressing this challenge.

If you have any questions about the NDIS Review, we welcome you to contact us. The Review, and the Australian Government, has suggested it will take 2 – 5 years to make most changes. Mito Foundation is committed to assisting mito community members to get the support they need. Our NDIS Navigator service is available through our Mito Helpline. We are also committed to ensuring that the voices of the mito community are considered in changes to the systems that affect them. This includes by working with our partners at Rare Voices Australia and Neurological Alliance Australia.