Many individuals with sickle cell disease do not show obvious signs of disability. Even though it is a chronic illness, it may not be easy to obtain financial benefits. Eligibility for Supplemental Security Income (SSI) is based on the extent of the disability as well as income eligibility. You must qualify in both categories to be determined eligible, which can make it difficult for individuals with Sickle Cell disease to qualify for SSI. One of the first questions parents ask me when their baby has been diagnosed with sickle cell is whether they can apply for SSI. The answer is generally no because most babies experience few complications. As the child gets older, this, of course, could change. SSI looks at a comprehensive picture of the individual’s condition, including the number and dates of hospital admissions, emergency room visits, acute visits, organic and physical dysfunctions, and the blood count, as well as the need for blood transfusions.
The information below is straight from the SSI website:
Hematological Disorder Guidelines
A. Sickle cell disease. Refers to a chronic hemolytic anemia associated with sickle cell hemoglobin, either homozygous or in combination with thalassemia or with another abnormal hemoglobin (such as C or F).
Appropriate hematologic evidence for sickle cell disease, such as hemoglobin electrophoresis must be included. Vaso-occlusive, hemolytic, or aplastic episodes should be documented by description of severity, frequency, and duration.
Disability due to sickle cell disease may be solely the result of a severe, persistent anemia or may be due to the combination of chronic progressive or episodic manifestations in the presence of a less severe anemia.
Major visceral episodes causing disability include meningitis, osteomyelitis, pulmonary infections or infarctions, cerebrovascular accidents, congestive heart failure, genito-urinary involvement, etc.
A. Recent, recurrent severe vaso-occlusive crises (musculoskeletal, vertebral, abdominal); or
B. A major visceral complication in the 12 months prior to application; or
C. A hyperhemolytic or aplastic crisis within 12 months prior to application; or
D. Chronic, severe anemia with persistence of hermatocrit of 26 percent or less; or
E. Congestive heart failure, cerebrovascular damage, or emotional disorder as described under the criteria in 104.02, 111.00ff, or 112.00ff.