It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

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