White House offers guidance and facts on serving students with sickle cell disease

Advocates are calling for more understanding and empathy from schools when accommodating students with sickle cell disease.

The White House Initiative on Educational Equity, Excellence, and Economic Opportunity for Black Americans addressed the need for support for students with sickle cell disease, particularly in educational settings, on a recent webinar. Participants on the webinar said that an understanding between students, teachers, and peers is needed to ensure their success. During the event, students also shared personal experiences of navigating the condition. 

Sickle cell disease is an inherited disorder that affects your red blood cells.  A protein called hemoglobin located within the red blood cells is abnormal. The consequences of this lead to pain, infections, anemia, strokes, breathing problems, vision problems, and organ damage and failure.

Dwayne Scott, a Department of Education attorney, said that sickle cell can be considered a disability under section 504 of the Rehabilitation Act. If the condition substantially limits a life activity like the circulatory system, learning, or walking, it qualifies.

Scott said schools have a responsibility to provide reasonable accommodations to meet the individual needs of students with sickle cell disease. This can include allowing absences, modifying participation in activities, and implementing sanitation practices.

“In the event that a school violates section 504 rights, you may be required to train faculty and staff on how sickle cell disease may manifest, or how living with sickle cell disease may impact students physically, psychologically, socially, and academically,” Scott said.

Tom Moulton, a pediatric hematology oncologist, said a sickle cell patient’s school work can be impacted by silent strokes- so their performance needs to be monitored. 

Moulton gave examples of ways students can be accommodated. For example, students should be allowed to keep a water bottle at their desks, as people with SCD get dehydrated quickly. With that, they should be allowed bathroom breaks as needed due to their sensitive kidneys. Other things to monitor are physical activities in gym class and their susceptibility to silent strokes.

“Because people with sickle cell disease really like to hide that, you know, they used to be able to do something, and now they can’t,” Moulton said. “So it’s important to keep a very close watch on how they’re doing academically, and if they seem to be failing it is that they do get some testing done to see whether or not they might have a learning disability, so that they can be helped as early as possible.”

Deja’nae Jones, a college student with sickle cell, said that teachers should believe their students when they reach out.

“Please do not have suspicions that your students are taking advantage of their 504. You know, that just opens a door that I don’t think needs to be opened. These students are struggling already, with not being believed and things like this. Just give them grace, please,” Jones said. 

More information on how the White House Initiative serves Black students with disabilities can be found here.