What is the National Disability Insurance Scheme (NDIS)?

The NDIS is run by the National Disability Insurance Agency, also known as the NDIA.
 
The NDIS provides financial support to eligible Australians with a permanent and significant disability. Each person on the NDIS has an individual plan that details their goals and approved funding.
 
If the NDIS is new to you, or a bit hard to wrap your head around, start with these resources. They aim to paint the overall picture and outline the NDIS journey.

Real stories from the mito community

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.

Resources to help you understand the NDIS

Can I access the NDIS?

Now is a good time to contact with our NDIS Navigator

Speaking with our NDIS Navigator will help you understand the NDIS application stages and what supporting information is needed. Get in touch today via our Helpline.

To access the NDIS, you need to meet the eligibility criteria, fill in an ‘Access Request Form’, and submit it to the National Disability Insurance Agency (NDIA) with some supporting information.

This section explains the process and provides documents to empower you with the knowledge to decide whether to apply; and if so, how. We highly recommend you download our Accessing The NDIS Checklist which will guide you through this process.

Here are a few resources on how to access the NDIS:

 How to apply for the NDIS

If you think you might be eligible to apply to become a participant of the NDIS, please follow the Accessing The NDIS Checklist as it provides a step by step guide to apply. Applying for the NDIS can be difficult, if you need assistance, please contact the Mito Foundation Helpline or call 1300 977 180 to organise an appointment with our NDIS Navigator.

The following resources will help you prepare for your one-on-one coaching with our NDIS Navigator: