By V.S. Santoni
World Sickle Cell Day, observed annually on June 19, aims to raise global awareness about sickle cell disease (SCD), a genetic disorder that affects millions worldwide, predominantly those of African descent. This day emphasizes the importance of education, early diagnosis, and treatment to improve the quality of life for individuals living with SCD.
In alignment with World Sickle Cell Day and National Black Family Cancer Awareness Week, the U.S. Department of Education’s Office for Civil Rights (OCR) has released three new resources addressing the civil rights of students with SCD, epilepsy, and cancer. These resources provide crucial information for students, parents, families, and schools regarding the legal protections afforded to students with these medical conditions under Section 504 of the Rehabilitation Act of 1973.
Section 504 prohibits discrimination against students with disabilities in institutions that receive federal financial assistance, encompassing nearly all public schools and higher education institutions. The new resources from OCR explain the circumstances under which SCD, epilepsy, and cancer trigger protections under Section 504. They also outline the modifications educational institutions may need to implement to prevent unlawful discrimination and the steps necessary to remedy past discriminatory practices.
Sickle cell disease is a hereditary blood disorder characterized by the production of abnormal hemoglobin, leading to distorted, rigid red blood cells that can obstruct blood flow and cause severe pain, organ damage, and increased risk of infection. In the United States, over 90% of individuals with SCD are Black, highlighting the intersection of race and health disparities.
OCR’s new resources aim to inform and empower families and educational institutions to understand and advocate for the rights of students with SCD. These resources are particularly vital given the Centers for Disease Control and Prevention’s data showing that Black Americans are disproportionately affected by SCD, epilepsy, and various forms of cancer. Assistant Secretary for Civil Rights Catherine E. Lhamon emphasized the significance of these tools, stating, “These new resources will give all students experiencing sickle cell disease, epilepsy, or cancer, as well as their families and schools, important tools to understand when and how they are protected by federal disability rights laws.”
Additionally, OCR enforces Title VI of the Civil Rights Act of 1964, which prohibits discrimination based on race, color, or national origin. This enforcement is crucial as it addresses the compounded impact of racial and health disparities on students’ educational experiences.
World Sickle Cell Day serves as a reminder of the ongoing need for awareness, research, and support for those affected by SCD. The OCR’s new resources are a significant step in ensuring that students with SCD receive equitable educational opportunities and are protected from discrimination. By providing these tools, OCR helps schools create inclusive environments where all students, regardless of their health conditions, can thrive.
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