A couple of weeks ago I was lined up as a possible interviewee for an ABC News Story about the National Disability Insurance Scheme (NDIS) and people with neurodegenerative diseases. In a pre-interview chat with the journalist, Dan Conifer, I spoke about some positive and negative aspects of my experience, and mentioned that we were waiting for news about outcomes of our most recent interactions with the NDIA. I ended up receiving news that an application for communications technology had been rejected, on grounds including insufficient “value for money”, in the 24 hours before the interview, resulting in a separate news story. Links to the various versions appear below.
Update (mid December 2018)
Since Easter 2017, an (un)reasonably protracted process led to approval for funding of a NeuroNode, along with the other care and equipment I have needed, for which I’m very grateful (thank YOU Australian taxpayers). My meetings have been with planners, and at home. There still seems to be variability, but – if (?) my experience is indicative – educational efforts by MND associations and others, and the NDIA’s attempts to improve its processes, are making a difference for Australians under 65 with MND.
The full TV news story (broadcast 15/04/17)
https://www.facebook.com/DanConiferABC/videos/1268198619929099/
Kirsten Harley 
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