Sickle cell anemia is a disorder that affects nearly 70,000 to 100,000 Americans, making it one of the most commonly diagnosed hereditary blood disorders.
If your child is living with sickle cell anemia, the cost of medical treatment can be extremely high. The financial hardship is compounded if he or she requires full-time care, forcing you or the other parent to stop working. Fortunately, the Social Security Administration (SSA) has disability benefits available to support the medical and financial needs of children with sickle cell anemia and other debilitating conditions.
About Supplemental Security Income (SSI)
The Supplemental Security Income (SSI) program is a SSA service designed to meet the financial needs of certain people with limited income and resources. This includes children with a diagnosed disability. Once their application is approved, the SSA will pay monthly benefits to their families and provide access to Medicaid to cover the costs of medical bills, prescription drugs, hospital stays, and other health expenses.
When parents apply for SSI benefits on behalf of a child with a disability, the SSA subjects them to a means test, which compares the household income to established thresholds. If your household’s income exceeds the approved limits, the application will not be approved regardless of the severity of your child’s Sickle Cell Anemia. Once your child turns 18, however, parental income is no longer a factor in the equation and he or she will have a much easier time qualifying for SSI benefits.
How a Child with Sickle Cell Anemia can Medically Qualify for SSI Benefits
All SSI applicants must meet a listing in the Blue Book, which is the SSA’s catalog of recognized disabilities and their corresponding criteria. Sickle cell anemia in children is referenced in Section 107.05--Hemolytic anemias. To meet the criteria for approval, your child must have sickle cell anemia with one of the following:
- Painful blood clots at least three times in the past five months
- Hospitalization at least three times in the past 12 months due to sickle cell complications such as strokes, kidney failure, and heart problems
- Severe and chronic anemia, with a hematocrit of 26% or less
- Cooley's anemia requiring red blood cell transfusions at least once every six weeks
Medical Vocational Allowances
Children who do not meet a Blue Book listing can still receive disability benefits via a medical vocational allowance. If the symptoms of sickle cell anemia leave them unable to perform activities appropriate to their age group, they will likely be approved.
To qualify under a medical vocational allowance, your child’s treating physician will have to complete a “residual functional capacity” (RFC) form. This information enables the SSA to evaluate the extent to which sickle cell anemia affects your child’s ability to participate in typical childhood activities. You can download an RFC for your child’s physician online.
Starting the Application Process
To apply for SSI benefits on behalf of your child, you must complete an application form and include medical documentation like the following:
- A thorough clinical history
- Hemoglobin electrophoresis test results
- Recent hematocrit levels