Rare disease students in regular classrooms: How is their presence, participation and learning guaranteed?

Abstract

This study is part of a larger study on rare diseases (RD) and educational inclusion. The educational response to students with rare diseases, also known as rare, minority or low prevalence diseases, implies a comprehensive approach from the educational, health and psychosocial fields that challenges the inclusion processes that are developed in many schools. The aim of this research is to analyse which educational processes favour the inclusion of students with rare diseases in ordinary classrooms. The methodology of multiple case studies allows for an in-depth analysis of the inclusive processes developed in three ordinary schools in the Valencian Community that educate students with RD. This is a qualitative study that brings together the voices of management teams, teaching and non-teaching staff, families and students with RD through interviews and focus groups. The results show which processes developed in the schools guarantee the presence, participation and learning of the students with RD. The conclusions highlight the importance of the planning and coordination of the agents involved, the organisation of support, especially specific support, and open up the discussion on the dilemmas posed by the evaluation of learning.