Annual Report No. 2 of the 48th Parliament
Submission 1
to Whom It May Concern:
I’m not sure if what I have to say actually addresses any of the Terms of Reference but I would like to make a comment in regards to the NDIS and the process of application.
My son has a very rare genetic muscle disease. There is no actual treatment and no cure. The best that can be done is exercise and diet modifications. He has constant muscle weakness and pain all the time – there is never a moment when he is not in pain. For many years I was his unofficial carer but as I have aged, I have had some major health issues and so we decided in 2023, to make an application for NDIS. We gathered as much “evidence” as we could from specialists that we’d seen when he was first diagnosed, as well as his GP, his psychologist, and a geneticist and submitted it all. That application was rejected on the basis that “all available treatment options to relieve or cure your impairment have not been explored.” When I spoke to someone at NDIS it was also very obvious that they had never heard of Glycogen Storage Diseases and it clearly did not fit any of their drop down boxes, but I was told that this decision was based on the secondary disability that we listed which was anxiety.
in 2024 we tried again, this time with extra