Boston has committed to ensuring that students with sickle cell disease—a genetic disorder that causes pain, fatigue, and organ damage—are identified and given appropriate accommodations, such as more time to get to class, modified physical education classes, and door-to-door transportation.
The voluntary agreement was announced Feb. 7, three years after a group of parents said their children were being unfairly penalized because the 56,000-student district didn’t recognize the disease as an illness that is covered under Section 504 of the Rehabilitation Act of 1973.
Sickle cell disease causes red blood cells, normally smooth and round, to morph into a curved, sickle shape. The misshapen cells can’t carry oxygen as well as normal red blood cells and also clump in small blood vessels. Sickle cell disease is often found in people of African descent or Hispanic people from Central and South America; all of the Boston students identified with sickle cell disease are black or Hispanic.
The families filed a complaint with the Education Department’s office for civil rights, but the voluntary agreement puts an end to that investigation. The district agreed to create a sickle cell disease advisory group that will come up with a policy for identifying, locating and serving students with the disease. School leaders will also be given a list of potential accommodations that students can receive. For example, they might be allowed unlimited access to the school nurse, permission to carry water at all times and permission to use a school elevator. Exertion and dehydration can make symptoms worse.
“This agreement is an important step in recognizing the rights of children and youth with sickle cell disease,” said Rajan Sonik, formerly of the Massachusetts Law Reform Institute. The institute, along with the Boston-based Center for Law and Education, represented the families in the case. “These are highly vulnerable kids who are often stigmatized and left feeling invisible.”
A version of this news article first appeared in the On Special Education blog.