I know this community has a lot of collective experience with 504 plans, so I thought I might get some insight here.
My kid has cystic fibrosis, a disease that is progressive, eventually debilitating, and eventually fatal.
But she isn't having any day to day health impacts from it YET. While she does daily treatments at home, she doesn't have to take any medications and she isn't impaired in her day-to-day living at all.
That said, it is very normal for kids with cystic fibrosis to start out fine and then, as the disease progresses, they start having to go into the hospital for 2-3 week stretches multiple times a year. So the standard advice I have received is that it's better to do a 504 plan right up front for the incoming kinder kid, who isn't having problems yet, so that when the problems start happening, the plan is already in place. Accommodations mostly include things like tutoring and lessons/homework sent home during hospitalizations, not being penalized for being out of school for hospitalizations, some modifications for PE, etc.
Can I get a 504 plan with a well-documented diagnosis of a well-documented progressive disease but no health impacts yet? Or will they say since she doesn't have a history of being sick, it cannot be justified?
Any thoughts would be most appreciated! Thanks so much.