BOSTON -- It's the most common hereditary blood disorder, but sickle cell disease advocates say there's a critical lack of education and awareness about the disease that effects more than 100,000 people of color a year.
Despite federal law, school districts often fail to recognize it as a disability and create accommodations for students. Now, Boston has agreed to change that in the largest school district in the state after a federal discrimination investigation.
"She's in and out of the hospital almost every month. In the clinic almost every week. So she misses a lot of school,” Carissa Juarez, the mother of a 6-year-old girl with sickle cell disease said.
Juarez's daughter has missed a lot of the first grade in Boston Public Schools.
Because she suffers through painful episodes of the blood disease -- one recent sickle cell crisis put her in a wheelchair.
“I was called in the middle of the day to ask why is Jalisa in a wheelchair? She looks too good to be in a wheelchair,” Juarez said.
At first, Juarez told Boston 25 News, the confusion was understandable, but the way to school reacted made her concerned.
"When I get to school, the wheelchair is in the nurse’s office, yet my daughter's not with the wheelchair. And I was told ‘well, your daughter seemed to look fine during the day. We thought that she could just walk,’” she said.
Carissa's story isn't unique in Boston Public Schools. In response to an investigation by the Federal Department of Education for civil rights, BPS agreed to recognize sickle cell disease or SCD as a
Disability and to implement new policy changes.
“By not treating students with sickle cell disease as students with a disability, they weren't properly giving these children the same right to an education,” Rojan Sonik, a volunteer with the Center for Law and Education, said.
In a statement, the district said the agreement helps ensure that all students have equitable access to a high-quality education and it has been working on SCD accommodations for the last three years.
But parents say it isn’t making a difference.
“Nothing has changed,” Keisha Seaton said. "I went through bps with sickle cell. I wasn't able to complete Boston Latin School because I had sickle cell."
Seaton’s two children, ages 12 and 18, both have the disease.
"When you go to the school nurse and say my child has sickle cell and the school nurse has no idea what sickle cell is? That's critical,” she said.
Jacqueline Haley, executive director for the Greater Boston Sickle Cell Disease Association, said the problem isn’t just in schools.
"They're facing these discriminations in the schools and they're facing it in their health care settings,” Haley told Boston 25 News.
The agreement calls for the creation of an advisory board, an evaluation process for SCD student needs and awareness campaign and training.
It also addresses one of the biggest issues--making up missed school work by requiring a supplement education plan for SCD students.
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