Going to School with Sickle Cell Disease

At home, it is easier to monitor the needs of children with sickle cell disease (SCD). However, at school, the environment is less controlled. Preventing and managing pain crises at school can be more difficult. It is important to make sure they have the same academic and social opportunities as other children.

Talk to your child’s doctor, teachers, and school staff about how SCD impacts your child’s experience in school. Many children feel that teachers do not know enough about SCD. Teachers should know what accommodations your child needs to stay healthy and succeed. You can also talk to teachers about formalized plans that public schools offer to students with healthcare needs.

How does sickle cell disease affect my child’s school experience?

Children with SCD do not have learning difficulties and can have normal childhoods despite health complications. However, fatigue and pain episodes can affect their concentration in school. Complications and doctor’s appointments can also cause more absences.1,2

Students with SCD may also need accommodations to prevent pain crises during the school day. They should have access to water, bathroom breaks, and safe options during physical education.3

Students are facing these challenges while transitioning from pediatric to adult care. They are also dealing with the normal childhood struggles of self-concept, self-esteem, puberty, and fitting in socially. These factors combine to put a large emotional burden on students with SCD.2

What should I make sure my child’s teachers know?

Many students feel that their teachers do not have enough empathy or knowledge about SCD. They often say teachers view their necessary self-care practices as disruptive to the school routine. Children describe situations where teachers refuse bathroom breaks, access to water, or rest during exercise.2

At the beginning of the school year, meet with your child’s teachers and school staff. This should include the physical education teacher, school nurse, principal, and guidance counselor. At this meeting, explain SCD in broad terms and how it impacts your child’s daily life. You should make sure teachers know:3,4

  • How your child copes with different aspects of SCD
  • How to inform you when your child has symptoms at school
  • To ensure enough access to water
  • To allow frequent bathroom breaks
  • To allow accommodations during extreme temperatures and physical education
  • To take special care of injuries
  • When to get emergency medical care
  • To watch out for their emotional and social well-being
  • To accommodate absences with make-up assignments and instruction

In addition, an individualized care plan should be written with input from teachers, nurses, your child, and the family. This plan should be updated yearly and should include:3

  • Emergency contact information
  • Instructions for giving pain medications
  • Any special needs the student may have

What are 504 plans and Individualized Education Plans?

A 504 plan requires that public schools remove barriers so students with healthcare needs can participate in general education programs. No student should be denied participation based on SCD-related needs. For example, this plan may contain written requests for:3,5

  • An extra set of books for home
  • More frequent bathroom breaks
  • Access to water throughout the day
  • The need for extra layers of clothing
  • Plans in the event of an absence
  • Accommodations for field trips, extracurricular activities, and transportation

An Individualized Education Plan (IEP) focuses on instructional support for students with healthcare needs. When SCD-related health problems impact a student’s academic performance, an IEP may be needed. This is a written document that ensures special or remedial instruction. It should be updated yearly and include: 3,5

  • Your child’s present levels of academic performance
  • Annual education goals
  • Instructional support your child will get
  • Any changes to your child’s learning environment or curriculum
  • How your child will participate in standardized tests
  • How your child will be included in general education classes and school activities

There are many other possible aspects of 504 plans and IEPs. Talk to your child’s doctor and school staff to ensure the right accommodations for your child are included.

What else can I do to help support my child in school?

Keep in contact with your child’s teacher. Inform them when you know your child will miss school. Also talk to them when your child is happy and feeling well. This can help them identify behavior changes that may indicate a problem.

As children grow, it is important to help them become their own advocate. Help them understand:

  • Their own condition
  • How the school is required to help them
  • How to communicate with teachers and school staff about their condition
  • How to express their needs clearly

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Written by: Matt Zajac | Last reviewed: January 2021