School and community: factors and resources favoring the educational inclusion of students with rare diseases
Abstract
This paper analyses the relationship bet- ween community actors and the mobilization of environmental resources as factors operating in favor of the socio-educational inclusion of students with rare diseases. The research questions that guide our study are: what are the key factors favoring collaborative relationships between schools enrolling students with rare diseases (RDD) and their communities and systems?; what community resources contribute to the inclusion of students with RDD?; what are the key factors favoring the inclusion of students with RDD?; and what are the key factors contributing to the inclusion of students with RDD? The methodology follows a descriptive qualitative approach on ten cases developed in several Autonomous Communities. Interviews and focus groups are carried out with teachers, pupils with RDD, families and other educational agents. The results indicate that the opening of schools to the community and the collaboration with professionals from the medical-health, care and educational fields are essential. In many cases, the relationships have been mediated by the families. The optimization of existing resources in a given context implies consolidating a logic of collaboration necessary to articulate inclusive educational responses. In this process, the role played within a specific context by associations of people with rare diseases, guidance teams and the initiatives that schools have implemented to reduce and/ or eliminate barriers that hinder or limit the presence, participation and progress of these students at school are also deci- sive. The study concludes that there is still much room for improvement in community relations.
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