In the latest partner event with Rare Voices Australia, the MAA has participated in a forum to discuss how the NDIS is functioning for people with rare disease. NDIS Assistant Directors for Community Engagement attended the meeting which was chaired by RVA CEO, Nicole Millis. The directors took notes and asked many questions. In summary of the feedback to the MAA from people with Myasthenia and from others attending the forum, it seems that distinguishing between permanent disability and chronic/acute/palliative impacts is causing difficulties when applying for access to the NDIS. Validating access is the first step to a successful application. Seeking professional support in writing an application is very helpful but many plan managers don’t always grasp the complexities of more chronic conditions such as Myasthenia so it can be a difficult process. There is on-line support available to help understand this access process

Accessing the NDIS - Providing evidence of your disability This link will take you to information to help you provide strong evidence of disability https://tinyurl.com/2j4v8xc6

Documentation from Doctors and service providers is also required and again, discussion reflected how ill prepared Professionals are to address the questions adequately. Of note, the NDIS is available to people from 7-65 years. Application for support must be lodged prior to turning 65 years. It does not require approval for funding to be provided by this date.