You can contact the NDIA directly on 1800 800 110 and ask to complete an access request form. We highly recommend that you use the language of disability throughout your interaction with the NDIA – and refer to ME/CFS as myalgic encephalomyelitis if possible. For example, 'I am disabled with myalgic encephalomyelitis and I would like to complete an access request form'. You should allow up to 30 minutes for this call.

You should be able to fill out most of the form yourself, but you can also nominate someone to do this on your behalf (although you must be present when they do this). There are also some advocacy organisations who may be able to help you to do this, although this will vary by state.

It is extremely important to be able to supply a coherent medical history, including when you were diagnosed, treatments that have been tried, tests that have been done, etc. Our telehealth nurse can help with this.

You will also need to submit a supporting evidence form, which should be filled out by a health professional referring to the NDIS domains. You can download our NDIS and ME/CFS for GPs guide here. If you have a specialist who knows your circumstances well, then you can ask them to fill it out, if not, your GP can fill it out for you. The more detail your doctor can provide, the better, so be sure to let them know beforehand that you would like them to complete the supporting evidence form for the NDIS, and make sure you book a double appointment if necessary.

As well as specifying your level of impairment in the supporting evidence form, we also strongly advise you to ask your doctor for a letter specifying that they now consider your condition to be permanent. It should say something like, 'XXX has been a patient of mine since [yr]. At this point, I consider that their level of impairment is unlikely to show significant improvement and I consider their condition to be permanent.’

The RIAC (Rights, Information and Advocacy Centre) have a great template/example letter that you can take to your doctor. Access the letter here.

Reports from specialists are extremely helpful. We recommend getting an occupational therapist report that focuses on functional impairment if possible (for example, WHODAS or AMPS functional assessment tests). The NDIS will not pay for this if you are not yet accepted onto the scheme (supports cannot be backdated), but an occupational therapist may be accessible through a chronic disease management plan which should be available through your GP.

You can view an example of an access form through the Summer Foundation here.