Learn how to advocate for your child with sickle cell disease at school. Understand your rights, request a 504 plan and work with your care team for support.

Published: September 8, 2025

Estimated reading time: 3 minutes

If your child is diagnosed with sickle cell disease, they may require additional support at school. Symptoms of sickle cell disease can cause fatigue, pain episodes and frequent classroom absences. That’s why it’s important to notify the school of your child’s diagnosis: to advocate for their health, safety, academic progress, and support in their school environment.

“Children with sickle cell disease can thrive in school when their unique needs are understood and supported through proper accommodations,” said Ashok B. Raj, M.D., pediatric hematologist/oncologist with Norton Children’s Cancer Institute. “Advocating for your child with sickle cell disease isn’t asking for special treatment; it’s supporting their learning and overall health.”

Know your rights and 504 plans

Federal laws protect students with chronic medical conditions under Section 504 of the Rehabilitation Act. As a result, public schools must provide reasonable accommodations and protections for children with medical conditions, such as sickle cell disease.

A 504 plan puts your child’s medical protections in writing. Accommodations for children with sickle cell disease at school may include:

• Frequent water and bathroom breaks
• Rest periods during pain or fatigue
• Assignment flexibility after absences
• Modified physical activity expectations
• Access to temperature-controlled spaces

How to talk to school staff about sickle cell disease

Discussing your child’s needs can help build positive relationships with teachers and staff so they can better support your child’s well-being and education. An example script to use when contacting the school may be:

“My child has sickle cell disease, which affects their blood cells. This condition can cause fatigue, pain episodes and complications that could impact their school day. My family would like to partner with the school on a 504 plan to help my child stay healthy and continue learning.”

You should be prepared to share common symptoms of sickle cell disease that the school might observe, such as pain, fatigue and difficulty concentrating, as well as appropriate ways to respond when mild symptoms or an emergency occurs.

Providing medical documentation

Schools need proper documentation to understand your child’s needs due to their condition. Your child’s health care team can help you gather:

• Diagnosis letter from your child’s hematologist
• Current treatment or care plans
• Medical necessity letter for accommodations
  
  

Your child’s provider should include language that explains how sickle cell disease can affect your child’s educational needs and performance.

Proper accommodations for sickle cell disease at school

Managing your child’s sickle cell disease at school requires proper awareness from teachers, administrators, coaches, a school nurse and any other staff members your child works with. Prevention-focused accommodations can help keep your child healthy throughout the school day.

Health and safety:

• Hydration access to prevent dehydration-triggered pain episodes
• Bathroom flexibility without penalties
• Temperature management during activities and field trips (avoid excessive heat or cold)
• Quick access to a school nurse when symptoms begin
  
  

Academic support:

• Flexible scheduling after absences or hospital visits
• Modified physical education during flare-ups
• Extended time for assignments when needed
• Makeup work policies that account for medical absences

Children with sickle cell disease deserve to feel supported and ready to succeed in the classroom. If you’re unsure where to start, contact your child’s health care provider or care coordinator.