Abstract

Objective: Children and youth with special healthcare needs (CYSHCN) in the United States face elevated stress from managing complicated treatment regimens with school outcomes that are generally worse compared to peers. As medical care is evolving towards increasing outpatient service delivery and decreasing hospital stays, CYSHCN have limited access to inpatient educational supports. Our team aims to describe the services in the expansion of a traditional inpatient Hospital-Based School Program (HBSP) to serve outpatient hematology/oncology, pulmonology, and dialysis clinics.   


Methods: HBSP outpatient services began within outpatient hematology/oncology and pulmonology clinics followed by the dialysis clinic. Program changes focused on understanding current services, review and revision of data collection, promotion of service delivery standardization, and development of standardized hand off processes between inpatient and outpatient HBSP teachers.   


Results:  Across 2016-2020, 884 patients were served. Primary diagnoses included cystic fibrosis, leukemia, brain tumor, other cancer, lymphoma, dialysis, and blood disorders. A total of 80 counties in-state were served, and patients spanned 179 school districts. Out of 445 patients, 36.4% had an existing Individualized Education Program (IEP), 51.7% had an existing 504 Plan, and 11.9% were assisted with obtaining an IEP or 504 Plan.  


Conclusions: Due to the HBSP, 884 patients received school supports. This showed that individuals who did have school supports received advocacy and a change in school services engagement with this HBSP. To our knowledge, this is one of the first studies to describe patient characteristics of individuals seen by an HBSP in outpatient clinics and the subsequent educational supports.

Keywords: School health Pediatrics Children with special healthcare needs Outpatient medicine


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