Special education. Those two words strike fear into the hearts of many parents. “But my son doesn’t need special ed!” I know, because I was one of those moms.
When my oldest son Julian, now 22, was in elementary school, the idea of a 504 plan — based on a federal law requiring students with disabilities to have access to educational resources — was brought up. I was incensed when I saw that hemophilia was listed under special education. Julian’s hemophilia was never a big issue. It still is not. He didn’t need a 504 plan, and he never wore a helmet. He was fortunate. But when my mighty warrior Caeleb came onto the scene, I saw things in a much different light.
A 504 plan isn’t used when a student needs specialized instruction. Rather, it’s used for accessibility. Many people with bleeding disorders infuse, and all is well without numerous issues. But many are in need of extra help. For example, a young girl with Von Willebrand disease might begin menstruating. Her periods are heavy, and she needs to go to the restroom more often. A 504 plan helps her have accessibility to the restroom when needed, without question. Her teachers will have the plan and know her needs.
Or, a boy with an inhibitor has a target joint. He misses school during bleeds, is on pain medications, and needs additional time to complete his work. The 504 plan recommends the amount of time for him to complete his work without penalty.
The 504 committee at each school meets annually to set the needs of each student requiring help with accessibility. If a student’s requirements change during the school year, another meeting may be called at the parent’s or guardian’s request. It is a living, breathing document.
Following are examples of issues that may be considered in a 504 plan:
- Verbal testing
- Proximity to the front of the room (close to a door, a seat with additional room for a wheelchair or crutches, etc.)
- Extended time on tests and homework
- An extra set of textbooks at home
- A buddy to help with books between classes
- Excused absences, late arrivals
- Passes to the clinic or restroom
I am looking forward to the beginning of the new school year for Caeleb, but with the advent of Hemlibra, I see that this may be the last year of the 504 for my mighty warrior. It’s a good thing, but also a scary thing. From once being a mom who was threatened by the stigma of special education to a mom scared at the thought of losing the 504, I see that we have come a long way from the days of loading and unloading a wheelchair into the car every single day.
The truth is that Hemlibra is not the end-all for everyone. Many are still infusing a few times a week or on demand and having bleeds. The fight is not over. The 504 plan is a tool that is available for students to use as needed.
Don’t be afraid to ask questions. When in doubt, talk to the school nurse or counselor about your fears and concerns to see if a 504 is a good fit for your child. It may be exactly what is needed.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.