That is NOT correct. A 504 is for a medical need only. A kid with a walker or with diabetes or blind in one eye or with a peanut allergy would have a 504. For the most part, kids with ichthyosis of normal intelligence and learning would have 504s due to their heat, dexterity and mobility issues.
IEPs are for cognitive delays. Cerebral palsy, speech delays, dyslexia, Down's, ADHD, autism, etc. Some kids with ichthyosis would have a 504 AND an IEP.
My oldest has a 504. It covers what to do when the temperature gets too hot - riding the bus, recess, gym class, etc are all modified for him if the temperature is up. It says he can have water/gatorade at any time. It provides for him having cream in class and the nurse's permission to put plastic on his feet or neosporin and a bandage on an injury. It has modifications for dexterity-intensive activities like gym class or writing for an extended time.
My other son has apraxia and cannot pronounce intelligible words. He is in preschool, so he has the IEP for speech pathology services now, and when he enters K we will pretty much copy the older son's 504. The IEP will be dropped only if his speech issues resolve. IEPs are needed for special ed services. 504s are not under the special ed umbrella.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"