I got approved for ASD level 2. Instead of getting a planning meeting scheduled like the NDIS letter states, I got an sms at 5.50pm that someone would call within the hour and she called in less than a minute. I had to literally ask her if this was the planning meeting because I was so confused. Then I said that I thought I could have it on phone or in person, as their website states, but I can’t because she’s in WA and I’m in QLD. Also I wanted a support person with me as I struggled to communicate clearly and since my husband was home, she railroaded me into completing it there and then. It really felt like I had no other option, which was very stressful as my 5yo kid was present and we were going to be heading into bedtime routine very soon.
For 12mo, I got zero core support, $6.5 in increased social and community participation, $1.2 in choice and control for a plan manager, $8 for improved daily living skills which includes a bit extra at first for the OT functional capacity assessment.
I understand that they want the FCA first to know how much I’m affected, but the problem is both my psychologist and psychiatrist reports discuss my mental health and comorbid conditions like ME/CFS, because in their eyes, my ASD both causes and is worsened by those things. But of course, those are an excuse for NDIS to not fund stuff. No amount of explaining that my immense fatigue comes from autistic burnout and sensory/social/executive function overload mattered. Heck, I’ve been doubting I have ME/CFS and I think I just live in autistic burnout in adulthood.
I’m concerned that even with the FCA, they will still say that many of my impairments are due to ME/CFS. The planner was really stuck on the fatigue and why ASD would need support for things like cleaning or driving. I had really hoped for some help with household stuff or a support worker to help lessen the burden on my husband, who does cares for all 3 of us, does the vast majority of household duties, and has his own health issues so he’s at very high risk of carer burnout.
What’s my best play - to get the FCA and not mention ME/CFS to them, so I can better explain that my fatigue is due to sensory, social and executive function overwhelm, or to focus on getting ME/CFS as a formalised diagnosis to add on to my application?
I honestly don’t even know how to get a formal ME/CFS diagnosis that the government would be happy with as there are no specialists that truly apply. Years ago, I tried to apply for DSP for ME/CFS (before realising I was autistic) and it failed miserably.