Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida

Issue title: Spina Bifida

Guest editors: Timothy Brei, Heidi Castillo, Jonathan Castillo and Judy Thibadeau

Article type: Research Article

Authors: Betz, Cecily L.^{a; b; *} | Hudson, Sharon M.^c | Skura, Adam L.^d | Rajeev, Nithya D.^e | Smith, Kathryn A.^{a; b} | Van Speybroeck, Alexander^{a; b}

Affiliations: [a] Department of Pediatrics, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA | [b] Children’s Hospital Los Angeles Spina Bifida Program, Los Angeles, CA, USA | [c] Implementation Science and Evaluation, Alta Med Institute for Health Equity, Los Angeles, CA, USA | [d] Chan Medical School, University of Massachusetts, Worcester, MA, USA | [e] Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

Correspondence: [*] Corresponding author: Cecily L. Betz, PhD, RN, FAAN, Professor of Clinical Pediatrics, Department of Pediatrics, USC Keck School of Medicine, Health Care Transition Specialist, Children’s Hospital Los Angeles Spina Bifida Program, 4750 Sunset Blvd. MS #53, Los Angeles, CA 90027, USA. Tel.: +1 323 361 8524. E-mail: cbetz@chla.usc.edu.

Abstract: PURPOSE:The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years. METHODS:Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis. RESULTS:The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION:Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.

Keywords: Transition, accommodations, adolescents, emerging adults, spina bifida

DOI: 10.3233/PRM-210116

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 4, pp. 593-605, 2022