Inadequate Recognition of Education Resources Required for High-Risk Students With Sickle Cell Disease

Transition Planning for Youth With Sickle Cell Disease: Embedding Neuropsychological Assessment Into Comprehensive Care

“…As noted earlier, many of these patients' needs had not been identified or were underserved within their schools, consistent with results of research that showed that many students with learning disabilities related to SCD are underidentified. 13 In our clinic, mental or behavioral health needs also are underidentified and underserved, but families are less likely to accept professional services. Indeed, only 9% of children with newly identified mental health needs accessed services such as behavioral therapy or psychiatric consultation.…”

“…Special-education needs of youth with SCD often remain underidentified or underserved in schools. 13 School personnel often are unaware that youth with SCD may qualify for accommodations and modifications of the standard curriculum, in either regular or specialeducation settings, under federal laws that pertain to persons with healthrelated disabilities. Furthermore, some school staff members are reluctant to identify a child as needing specialeducation services because of legitimate concerns about offending parents, being perceived as racially or culturally insensitive, contributing to the overrepresentation of children of color within specialeducation classes, or inaccurately labeling or stigmatizing the child.…”

Transition Needs of Adolescents With Sickle Cell Disease

“…Children with sickle cell anemia with or without CVA exhibit a gradual decrease in full-scale IQ (King et al, 2014). Pain episodes triggered by stress, anxiety, mood, sleep disturbances, weather, or physical activity may result in school absences and reduced extracurricular activities, producing decreased levels of participation in adolescent occupations (Herron, Bacak, King, & DeBaun, 2003;Jerrell, Tripathi, & McIntyre, 2011). Decreased cognitive functioning combined with reduced experience with activities of daily living (ADLs) can limit the ability of adolescents with SCD to transition to adult health care and independent living (Treadwell, Telfair, Gibson, Johnson, & Osunkwo, 2011).…”

School Performance and Disease Interference in Adolescents with Sickle Cell Disease

“…Students with SCD who are struggling academically may be eligible to receive educational support services through provisions in the Individuals with Disabilities Education Act (IDEA) of 2004 under the “other health impaired” category (National Dissemination Center for Children with Disabilities, 2012). Yet, Herron Bacak, King and DeBaun (2003) surveyed 39 adolescents with SCD aged 14–19 who had a stroke or three or more hospitalizations in a year and found that only 70% of those with stroke and 13% of those with high rates of hospitalizations had an individualized education plan (IEP) or received an evaluation for one. Additionally, all study participants had missed an average of 15 days of school or more (during the previous school year) and 28% of those with stroke had been retained at least one grade level suggesting that some adolescents with SCD may not be receiving the proper supports and accommodations needed to succeed academically.…”