Education Liaison improves implementation of school accommodations for students with sickle cell disease

Abstract

BackgroundChildren with sickle cell disease (SCD) have lower academic attainment than healthy peers. Many benefit from neuropsychological testing (NPT) and educational accommodations, including Individualized Education Programs (IEPs) and Section 504 plans (504s). Despite medical barriers to academic attainment, many children with SCD do not receive indicated NPT or accommodations.ObjectiveWe hypothesize that a dedicated Education Liaison (EL) embedded in the SCD team increases implementation of NPT and accommodations.Study designThis retrospective study included children aged 5–20 years with SCD receiving care at a single center from 2017 through 2020. Univariate analysis and multiple logistic regression were performed.ResultsTotal 316 children with SCD were included. At baseline, 52.8% had accommodations (IEP: 24.4%, 504: 38.0%). The EL interacted with 62.0% of children. Children with EL contact were more likely to undergo NPT (odds ratio [OR]: 5.385), have an IEP (OR: 4.580), and have a 504 (OR: 2.038) (p < .001 for all). At the end of the study period, 64.6% had accommodations (IEP: 33.5%, 504: 54.4%), which increased from baseline (p < .001 for all). EL interaction was associated with overt or silent stroke history (OR: 1.911), acute chest syndrome history (OR: 2.257), hospitalizations since age 5 (OR: 3.216), and hospitalization for vaso‐occlusive pain since age 5 (OR: 2.226) (p < .001 for all).ConclusionEL interaction improves access to NPT and educational accommodations among children with SCD. SCD centers should incorporate ELs in comprehensive care teams to improve access to appropriate educational accommodations.

Utilization of an Educational Liaison for Coordinated Care Between the Medical Home and School‐Based Professionals for Students with Chronic Pain

“…Examples of such models include the Independent Functions Model, in which a physician provides a medical diagnosis and defers to the school‐based professionals to define the appropriate educational needs for the patient, the Collaborative Team Model, which consists of the medical team and school‐based professionals working together to assure the student has access to FAPE, and the Systems Model, which includes representation for the student from the medical home, family, social, and school systems 13 . Studies examining the use of an EL to coordinate between medical and academic systems for youth with sickle cell disease, cancer, and neurofibromatosis, have demonstrated improved collaboration between schools and families, improved access to accommodations, and improved neuropsychology assessment scores 14‐16 . It is likely patients with chronic pain would benefit from EL support similar to other students with complex medical diagnoses.…”

“…13 Studies examining the use of an EL to coordinate between medical and academic systems for youth with sickle cell disease, cancer, and neurofibromatosis, have demonstrated improved collaboration between schools and families, improved access to accommodations, and improved neuropsychology assessment scores. [14][15][16] It is likely patients with chronic pain would benefit from EL support similar to other students with complex medical diagnoses. The framework proposed within this manuscript presents a model of coordinated care that combines aspects of both the Collaborative Team and Systems Models supported by research for other medically complex students.…”