Are you eligible for the NDIS?

Do you meet the following requirements:

Age: you need to be younger than 65 on the day you apply.

Residency: you need to live in Australia and be an Australian citizen, permanent resident or Protected Special Category Visa holder. 

Disability or Early Intervention: you need a permanent disability that impacts your daily life. Or evidence that early access to support means you’ll need less support later. 

Is the NDIS right for you when living with mito?

Mitochondrial disease (mito) can present differently for everyone. No two diagnoses look exactly alike when it comes to symptoms of mito and how it can impact you.  

You should be assessed, as per your own circumstances, to see if the NDIS is suitable for you.  

The NDIS supports people by:

  • Connecting people with a disability to support in their local community. For example, this could include local community groups and or support groups.  
  • Providing funding to eligible people with permanent and significant disability. 

You can learn more about the common terms used in the NDIS here. The Mito Foundation has condensed this list: Mito Foundation NDIS reference guide. 

The NDIS can support you in your local area; they are known as the partner in the community. 

  • Early Childhood (EC) Partners support children 0-9 years of age.
  • Local Area Coordinators (LAC) support people 9-65 years of age.

You can discuss your support needs and your plan to apply for the NDIS with your local partner in the community. You may be offered information on other local supports and community connections that you can use in addition to applying for an NDIS-funded package.​

Find your local support here.​

Useful information

​​​The NDIS has resources available to support you while trying to understand the NDIS. They include:​​

​​​NDIS Participant Journey – outlines the different steps people will go through to access the NDIS​​

​​​The NDIS booklets and factsheets- a range of information sheets have been provided to understand the NDIS and the different processes​​

​​​Checklist: Applying to the NDIS​​ ​​

Listen to stories from the mito community and consider how mito affects you.

Hands reach out to each other
Heart puzzle with stethoscope.

Anne's NDIS story

“I’ve been incredibly lucky and also had great help along the way”

Anne lives in Queensland and has retired early after a successful career in education. Anne lives with several disabilities related to MELAS, including muscle weakness and fatigue.

Anne's Story

“I’ve been incredibly lucky and also had great help along the way.”

Anne lives in Queensland and has retired early after a successful career in education. Anne lives with several disabilities related to MELAS, including muscle weakness and fatigue. Anne’s key goal in her National Disability Insurance Scheme (NDIS) plan is to maintain her independence. She also uses her NDIS supports to improve her mobility and maintain social connections. After previously receiving physiotherapy through health, Anne applied for the NDIS as a way to receive funding for ongoing maintenance physiotherapy.

It was a friend who helped Anne to realise how important it was to prepare well for her first planning meeting. This friend helped Anne learn the language of the NDIS. “What [they] want to know is what your goals are and what you need to achieve those goals. Without this lady’s help I would have had absolutely no idea that this was how I was supposed to present my information.

"They can’t tell what you need unless you tell them what you need.”

Anne assembled reports from her health professionals, including her GP, specialists and audiologist. It was her occupational therapy report that Anne believes was vital, even though it was a large expense out of Anne’s tight budget. Mito Foundation’s Pathways Telehealth Nurse also assisted Anne to explain MELAS to NDIS decision-makers and supported Anne to write her own impact statement.

“I can’t sing Michelle’s praises enough. She listened and was enormously supportive.” Some of the supports Anne receives through the NDIS are:

  • Physiotherapy and exercise physiology
  • Support workers to assist with household tasks such as cleaning and hair washing where Anne’s muscle weakness prevent her from doing these tasks independently
  • Technology that assists with independence, including large items like her mobility scooter and smaller items like a kettle that more easily tips.

Anne’s NDIS plan also includes funding for a Support Coordinator and a plan manager. Anne recommends that others consider requesting this, particularly in their first plan. “You need all the help you can get. For me, they were stepping stones to learning this new system. My Support Coordinator was able to match me to providers that fit in with my life.

This case study has been published with the permission of the NDIS participant and reflects actual events. This case study aims to provide an example of an experience with the NDIS and share tips for others. It does not guarantee the same outcomes for any other individual.

Listen to Anne's story.

Linda’s NDIS story

“We just don’t fit into their square boxes!”

Linda lives with fatigue and hearing loss caused by mitochondrial disease. She lives with her adult children and her husband in NSW and works part-time.

Linda’s NDIS story

“We just don’t fit into their square boxes!”

Linda lives with fatigue and hearing loss caused by mitochondrial disease (mito). She lives with her adult children and her husband in NSW and works part-time. When Linda needed new hearing aids, she applied for access to the National Disability Insurance Scheme (NDIS).

Her first plan came back with funding for allied health therapies and other supports that Linda had not asked for, but didn’t include funding for hearing aids! After two reviews, Linda now has a plan that has improved her wellbeing and allows her to be more present and involved in the day-to-day lives of her family. Some of the supports Linda receives through the NDIS are:

  • Exercise physiology and boxing
  • Support around the house, including cleaning and home maintenance
  • Hearing aids and other supports relating to her hearing loss

Linda self-manages her plan. This gives her maximum flexibility, but also means she has needed to learn about the sometimes confusing terminology and funding rules. Linda did find it difficult to think of herself as having a disability.

“Having to focus on all the things I used to be able to do that I couldn’t do anymore did bring up my grief around having mito. But I also think it helped me to accept some of my challenges. Learning how to get the supports I needed was empowering.” We asked Linda what she’s learnt that might help others in the mito community to navigate the NDIS.

“When preparing for your planning meeting, write a list of everything that could help you. Make sure each of these is backed up by a report from a professional. I particularly had to explain the impact of fatigue on my day-to-day life, as the decision-makers were not familiar with mito. To get the best outcome, you will need to advocate for yourself right from the beginning. I had to ask for a new Local Area Coordinator (LAC) to get one that ‘got it’ — this LAC understood my situation and my need for support. But even with a great LAC, I had to be persistent.”

This case study has been published with the permission of the NDIS participant and reflects actual events. This case study aims to provide an example of an experience with the NDIS and share tips for others. It does not guarantee the same outcomes for any other individual.

Listen to Linda's story.