Parent and Caregiver Handbook on Sickle Cell
Appendix:"IEP" or “504-plan" in public education
An “IEP" and a “504-plan" are tools to help students thrive in Pre-Kindergarten through 12th grade public education.
What is an “IEP"?
“IEP" stands for Individualized Education Program. The purpose of an IEP is to lay out the special education instruction, supports, and services a student needs to thrive in school. Students who are eligible for special education services need an IEP. Sickle cell disease is one of many reasons that students could be eligible.
What is a “504-Plan"?
A 504-plan is a legal, binding document. It is designed to help any student attending public school who has special physical or psychological needs to feel comfortable in the regular classroom.
Who is eligible?
Your child is eligible if they are considered disabled. This is a term that includes any condition that might cause your child to be unable to perform “major life activities" with the rest of the class. Where sickle cell disease is concerned, these activities may include
- Having to wait with the rest of the class to go to the bathroom or get a drink of water
- Having to have assignments or tests done quickly, even though your child might feel fatigued because of sickle cell disease
- Having to go out for recess in extreme temperatures
- Having to run without stopping in physical education, even though your child has trouble breathing or is tired because of sickle cell disease
How do I get a 504-plan?
The first step is to contact the school principal and fill out a referral form. Requests have to be in writing, not just verbal. You will need a letter from your physician describing exactly the kinds of adjustments that are needed because of sickle cell disease and why.
What kinds of accommodations are available?
Depending on the type and severity of your child's sickle cell disease related problems, the school may consider any of the following options and can even make up new accommodations to fit your child's needs. In addition to those already mentioned, the 504-Plan may recommend:
- Extended time for testing
- Extra time for moving between classes
- Use of a journal for communication between student/counselor/parents
- Special transportation to school and field trips
- Allowance for health-related absences
- Time in the school nurse's office so that pain can be managed at school and your son does not have to go home every time he has pain.
This information is provided courtesy of the University of San Francisco, Benioff Children's Hospital Oakland Sickle Cell Center.