Sue’s NDIS story

“If you have a reasonable claim/NDIS issue and are prepared to provide the supporting evidence — pursue it.”

Sue lives with her husband on a property in Queensland. She has mitochondrial myopathy and experiences extreme fatigue, muscle weakness, MCAD, as well as several other symptoms. After a National Disability Insurance Scheme (NDIS) Plan Review for more funding, Sue found the supports in her new plan had changed, including a decrease in her funding for:

  
• Consumables 
  
• Personal domestic assistance (significantly reduced) 
  
• Therapies including funding for reports necessary for a new wheelchair 

Overall, there was an increase in total funding but not in the categories she needed. This meant, in part, that Sue’s husband would be expected to assume responsibility for some of the previously funded supports. However, he had his own significant health issues to contend with that the National Disability Insurance Agency (NDIA) was not taking into account. Sue decided to challenge the NDIA's decisions. The first step involved lodging a Section100 Form to request the NDIA review their decisions. This is referred to as an internal review of a reviewable decision. These two reviews took four to five months to complete.

The outcome of this was that the NDIA upheld their original decisions. This meant Sue’s next avenue, should she choose to continue to challenge, was to approach the Administrative Appeals Tribunal (AAT) for an external review of the NDIA’s decisions. Sue decided to proceed with an appeal to the AAT. Sue said the AAT initially attempted to resolve the issues informally, through mediation. This included three meetings or phone calls between Sue, an AAT mediator, and NDIS lawyers. The decision from these meetings is legally binding. If this process does not resolve the issue/s, the next step involves the AAT Court.

The AAT process for Sue took another nine to ten months, however the outcome after mediation was worth it! The final NDIS Plan exceeded Sue’s expectations and was extremely generous. Sue self-manages her plan and this option gives her maximum flexibility; this is especially important for people who live outside metropolitan areas and may have fewer service provider choices.

Some of the supports Sue receives through the NDIS are:

  
•  Therapies: OT, Physio, Hand therapist, exercise physiologist, dietician, podiatrist 
  
•  Cleaning, meal preparation, yard maintenance, shopping, social outings

We asked Sue what she’d like to share from her experience, to help the mito community, and she was keen for others to know “there CAN be positives”, so if you experience an injustice or have a reasonable issue and are prepared to provide the supporting evidence, then pursue it. Sue cautions others with mito however, to be aware that it will be tiring and may be a long journey. This needs to be factored into your experience. It’s also important to remember that you’re dealing with human beings who are reasonable people, so treating them with respect will mean you receive respect in return.

Sue is also keen to emphasise that you ensure any agreed changes to your NDIS Plan do not erase/reset prior existing support in the plan. Rather, Sue advises you ensure changes are “in addition to” your existing support. She felt she needed to make sure of this for her own peace of mind.

Also, be fully prepared beforehand. Have a printout of existing plan(s) plus the copy of the “Respondent’s Statement” that is emailed to you prior and mark out clearly what you want to discuss. Be prepared to be asked for more reports including updating reports already sent in.  Sue found it helpful to go through everything prior with someone else (her son and daughter-in-law) to have a clear understanding and get another perspective.

Sue also encourages others to alert their AAT Mediator to any specific issues such as a need to rest during meeting/s, as well as any signs that indicate a need. For Sue, her speech starts to slur when she is stressed and/or fatigued. Her mediator noticed this and then knew to advocate for her by requesting a rest break at that point in the meeting.

Finally, having a support person or persons at AAT meetings (or video calls) helped Sue to feel less intimidated when outnumbered by NDIA staff and their legal representatives. This was intimidating, initially, until remembering the previous advice—that you are dealing with other reasonable human beings. Overall, Sue found this to be an experience that did not need to be feared or feel apprehensive about.

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.