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.
From my limited experience (I work in a k-8 school) we have only done 504 plans for kids with medical issues when the medical issues lead to a need for the adaptations and modifications at the current time. Partly this is because there is no way of knowing exactly what will be needed when/if the time came, and then the 504 would have to be changed, anyway. I think whether or not I'd push for a 504 going into the school year would partly depend on the school and how open and responsive they seem to be. If you have a meeting ahead of time with the principal, director of special services, etc. and discuss exactly what you posted, maybe they can give you a sense of how immediately they'd be able to do a 504 if the time came, especially with a good heads up about what kind of needs there might be. I know that, in our school, there has never really been "warning" that a child was going to miss a lot of school and need homebound (or something)- it was after a sudden medical diagnosis, a car accident, or the like. And the 504 was immediate and the services the child needed happened as soon as they possibly could (usually the child wasn't ready to be tutored or the like the exact same day especially if they had been acutely sick or injured). If the school seems like they will be foot-dragging (though I can't for the life of me understand why) I'd push harder to have SOMETHING in writing. The types of 504 plans we have for kids with medical diagnoses involve things taht the school has to do or be aware of on a day-to-day basis. For example, having a child test their blood sugar several times a day with the nurse and the protocol for giving glucose/calling parents/calling 911 at certain levels, etc. Or a child being allowed to rest if they are fatigued during the day or reschedule exams/tests (not really an issue at the K level) if they aren't well that day.
If no accommodations are needed at this point, an IHP may be appropriate and it can later be folded into a 504.
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