The Creation of an Individualized School Plan for Optimal Inclusion of Students with Osteogenesis Imperfecta

The aims of this study were to: (1) synthesize existing evidence regarding the integration of students with osteogenesis imperfecta (OI) into the school setting, (2) tabulate existing school integration tools for OI, and (3) create an individualized school plan to facilitate school integration.

Guided by the process of developing evidence-informed guidelines, an international, interprofessional, expert task force was convened. The process entailed: (1) reviewing of the literature, (2) developing recommendations, and (3) creating a clinically meaningful, person-focused plan to facilitate the integration and promotion of school inclusivity. The 13-member task force relied on empirical studies, grey literature, and their experiential knowledge (from clinical, teaching or patient experiences) to devise the plan.

Over a series of eight meetings and five drafts, the Task Force prioritized 14 core items for inclusion. These items consisted of general student information, fracture response protocol, student inclusion recommendations, mobility considerations, transfer considerations, toileting protocol, physical education recommendations, fieldtrip information, transportation considerations, evacuation plan, environmental and scholarly considerations, consent and authorization, and an annual renewal document.

Further research is recommended to pilot the plan, solicit ongoing feedback, implement and evaluate the plan into routine education and health care practices.