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Boston public schools agree to recognize sickle cell disease as disability

The Boston school system has agreed to recognize sickle cell disease — which affects millions of Americans and is more common among blacks and Latinos — as a disability that interferes with a student’s education, the Globe has learned.

Students with the disease, a painful disorder that causes red blood cells to deform into a sickle shape and stick to vessel walls, often miss numerous days of school and fall behind on their class work due to hospitalization or side effects from their medication.

In the voluntary deal that Superintendent Tommy Chang signed with the US Department of Education’s Office for Civil Rights last month, the district said it will provide supplemental instruction to students with the disease, offer special accommodations, and work to ensure students’ educations do not suffer.


“We see this as a really great step [forward] . . . Boston has been willing to work to resolve these issues,’’ said Jenny Chou, senior attorney at the Center for Law and Education, a nonprofit advocacy group that brought the federal discrimination complaint against Boston.

School officials said they began making adjustments in school policy after the complaint was filed three years ago, including updating its protocols for school nurses on how to care for students with sickle cell disease. The district said it is pleased to see such work “coming to fruition.”

The Center for Law and Education and the Massachusetts Law Reform Institute, a poverty law and policy group, filed their complaint in 2015, alleging that because school officials did not previously recognize sickle cell disease as a disability, they denied an alleged 250 affected students “free and appropriate education as required by law.”

Instead, the lawyers contended, students with the disease were penalized because their illness interfered with their ability to fully participate in class.

“There is research out there that said that sickle cell as a disease is often misunderstood,’’ said Rajan Sonik, a volunteer lawyer with the law reform institute. He said teachers don’t usually understand the disease, or they assume students are skipping class because of their illness.


The Centers for Disease Control estimates that sickle cell disease affects approximately 100,000 Americans. About 1 in 13 black or African-American babies is born with the sickle cell trait, the CDC said.

Sufferers struggle with chronic physical pain, infections, anemia, and fatigue. The side effects from medication used to treat the disease also cause concentration difficulties.

The law center argued that the district policies and practices have resulted in “the discriminatory expulsion of eligible students with sickle cell disease who are ‘African-American and Hispanic.’ ”

Those students were denied “access to instructional programs, supportive and related services, and the range of accommodations that they need to enjoy the same opportunities to success as students without disabilities,’’ according to the Office of Civil Right’s findings reviewed by the Globe.

The district did not notify parents or students with sickle cell disease of their rights under a law that prohibits discrimination in federally funded programs on the basis of a disability, the complainants said.

After the complaint was filed, the district expressed a willingness to address the matter, the document said. The civil rights office said it will monitor the district’s implementation of the agreement until it has determined that school officials have are in full compliance. “Failure to implement the agreement could result in [the Office of Civil Rights] reopening the complaint,’’ the document said.


The district agreed to establish a Sickle Cell Disease Advisory Group, comprised of parents, administrators, advocates, and school staff who will determine ways to better serve students in the district, develop and review policies, and provide input to district leadership.

Officials also agreed to identify and serve students with the disease and ensure they get a comprehensive evaluation to determine their educational needs.

The district, the agreement said, will make accommodations for the students, such as modified gym requirements, exemptions for certain activities, and door-to-door transportation.

Officials also promised to develop an outreach and public awareness campaign and staff for the sickle cell disease policy.

Meghan E. Irons can be reached at meghan.irons@globe.com. Follow her on Twitter @meghanirons.