Recursos para la inclusión educativa del alumnado con enfermedades minoritarias

This paper presents a study whose objective was to characterize the formative, human, physical and community resources that make up good educational practices for the educational inclusion of students who suffer from a rare disease, as well as to detect the needs felt by professionals and families in about these resources. For this, a cross-sectional and qualitative study was developed in which educational and health professionals, families and students with this type of pathology participated. The results suggest that the resources considered key are educational, human, and community resources, and that their orientation should focus on providing teachers with intervention strategies rather than on informing about these diseases. In addition, the existing human and physical resources are valued positively, although the need to expand them is pointed out, especially through the figure of educational technical assistants. Physical resources and materials are considered sufficient and the role of traditional resources as a complement to ICTs is highlighted. Another central element highlighted by the participants was the coordination and interdisciplinarity in addressing the needs of these students. Finally, the implications of these results for the development of inclusive practices are discussed, the main limitations of the study are presented, as well as future lines of intervention and research are outlined to continue advancing in the educational and social inclusion of these students. En este trabajo se presenta un estudio cuyo objetivo fue caracterizar los recursos formativos, humanos, físicos y comunitarios que configuran las buenas prácticas educativas para la inclusión escolar del alumnado que padece alguna enfermedad poco frecuente, así como detectar las necesidades sentidas por profesionales y familias en cuanto a estos recursos. Para ello, se desarrolló un estudio transversal y cualitativo en el que participaron profesionales educativos y sanitarios, familias y estudiantes con este tipo de patologías. Los resultados sugieren que los recursos considerados clave son los formativos, humanos y comunitarios y que su orientación debería focalizarse en dotar a los docentes de estrategias de intervención más que en informar sobre estas enfermedades. Además, los recursos humanos y físicos existentes se valoran positivamente, aunque se señala la necesidad de ampliarlos, especialmente mediante la figura de auxiliares técnicos educativos. Los recursos y mate