If your child has a chronic illness like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), long-COVID, fibromyalgia, POTS, Lyme disease, or Ehlers-Danlos Syndrome (EDS), you already know how challenging school can be. But did you know that your child may qualify for legal accommodations? In the U.S, this means a 504 Plan or an IEP (Individualized Education Program). Other countries have their own names for accommodation plans, but whatever they're called, educational support plans are critical tools for helping students with chronic illnesses and disabilities succeed in school. Your child has legal rights to an equal education, no matter what disabilities they are dealing with.
No matter if your chronically ill child is in Kindergarten, high school, or at a university, they need an accommodations plan for school. Whether you’re just beginning this journey or have been fighting for accommodations for years, the links in this post will give you a solid foundation—plus practical tips, resources, and hard-won advice from a parent who’s been there. I've also incorporated information from other parents in the support groups I started.
All of these posts were updated in 2021 and again this week:
- School Accommodations for Kids with ME/CFS and Related Illnesses - all about the U.S. system, the difference between 504 plans and IEPs, plus tips on finding an Educational Advocate, educating school staff (no matter where you live), and more.
- Example School Accommodations for Kids with ME/CFS - lists of real-life accommodations my kids (and others) have gotten in school--schools can do a lot more than they think they can!
- Talking to School Personnel about ME/CFS - based on advice to our son on how to explain ME/CFS to his professors in college (but applicable to younger grades, too)
- How Our Son Went from Couchbound to College - just as important as accommodating your child's current needs is improving their condition so they can manage a more normal school experience! This was a summary of what we think helped our son, who missed 90 days of his senior year in high school, start college on time a few months later.
- Effective Treatments for ME/CFS - My full summary of all the treatments that have helped us over the years. We both now lead fairly active, semi-normal lives.
Please share this information widely, with any parents who might need it.
Does your child have an accommodation plan?
What accommodations have helped?
Share your experiences (or any questions) in the comments below.
Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.
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