Black children from low-income households are being denied disability benefits for sickle cell, despite being eligible.

Approximately 1 in 365 Black children are born with sickle cell disease, according to the Centers for Disease Control and Prevention. But data shows a surge in denial rates for disability benefits for these children.

Sickle cell disease is a group of inherited red blood cell disorders with high morbidity, mortality, and a disproportionate financial burden on Black communities. The National Institutes of Health found that the lifetime burden of total medical costs associated with sickle cell disease is four times more than people living without the disease.

In response, the federal government has a disability payment program known as the Supplemental Security Income, or SSI. This program works to boost low-income Americans out of poverty and provide health insurance. Payments can amount to up to $900 a month, contingent upon income and household factors.

However, an analysis of federal data reveals that roughly 76% of those applicants, or at least 12,249 families, had their requests denied between 2015 and 2020. In 2013, the Social Security Administration proposed revising the Listing of Impairments criteria that evaluates cases involving hematological disorders in adults and children. These changes, which took effect in 2015, limit access to benefits for children with sickle cell disease by making it more difficult to gather and prove disability.

Medical experts and legal scholars claim that racism and inequity exist in education, medicine, behavioral health, criminal justice, and child welfare systems, and this perpetuates the racism and inequity in the administration of SSI benefits.

The new stricter rules require that a patient’s history includes three hospitalizations in a year, each lasting at least 48 hours and occurring at least 30 days apart. In contrast, the older standards required only one hospital stay related to the disease within the past year of filing the disability application.

The nonpublic data obtained from the SSA by Community Legal Services in Philadelphia reveals an alarming number of children denied benefits between 2011 and 2020. The denial rate for child sickle cell cases averaged 62.3% from 2011 to 2015. But following the rule change, the rate soared to an average of 76% over five years. Approximately 1,456 children who were qualified under the old standards were rejected under the new requirements.

Levella Golden, the Black mom of a child with sickle cell disease, identifies as being in the lower class. She told CBS News that not only were her applications for benefits denied five times, but the SSA noted her income in the denials. She expressed her struggles with living paycheck to paycheck, saying that if her family was rich, she wouldn't have to apply for Social Security disability.

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