Schooling of Children with Rare Diseases and Disability in Europe

ABSTRACT

Inclusive education of disabled students has been promoted in European disability policies. However, the transition process from more segregated system is slow. The purpose of this study was to provide an insight about different types of schooling of disabled children affected by a rare disease across Europe and to evaluate their and caregivers’ well-being. We analysed data from a cross-sectional study (BURQOL-RD) of persons with rare diseases that cause intellectual and/or physical disability: Prader-Willi syndrome, fragile X syndrome, three types of mucopolysaccharidosis and Duchenne muscular dystrophy. The sample consisted of 359 children aged 6–17 and 269 caregivers from eight European countries. Results showed differences between countries in proportion of students placed in special schools, which are still valid option in countries such as Germany, France or UK. Within the inclusive education modalities, lack of special support for disabled students was observed especially in low-income countries. No association between the type of schooling and quality of life was observed, but the subjective caregivers’ burden seems to be higher in special schools. The study shows existent differences in implementation of inclusive education in Europe. More research is needed in the field of rare disease disability and educational needs.

KEYWORDS:

• Caregivers
• disability
• Europe
• inclusive education
• rare diseases
• special education
• special needs
• quality of life

Acknowledgments

The authors would like to thank Carmen Rosa Sánchez López for her valuable support.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was part of the Social/Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe Project (BURQOL-RD), which received funding from the European Union within the framework of the Health Programme (grant A101205). The Executive Agency of the European Union is not responsible for any use that may be made of the information contained herein;Executive Agency for Health and Consumers [A101205];