Schooling of Children with Rare Diseases and Disability in Europe

Autor/inn/en	Linertová, Renata; González-Guadarrama, Javier; Serrano-Aguilar, Pedro; Posada-De-la-Paz, Manuel; Péntek, Márta; Iskrov, Georgi; Ballester, Marta
Titel	Schooling of Children with Rare Diseases and Disability in Europe
Quelle	In: International Journal of Disability, Development and Education, 66 (2019) 4, S.362-373 (12 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1034-912X
DOI	10.1080/1034912X.2018.1562159
Schlagwörter	Foreign Countries; Special Education; Inclusion; Students with Disabilities; Diseases; Special Needs Students; Intellectual Disability; Physical Disabilities; Comparative Education; Special Schools; Student Placement; Quality of Life; Outcomes of Education; Caregivers; Europe; Bulgaria; France; Germany; Hungary; Italy; Spain; Sweden; United Kingdom + Suchen Sie Ihr Suchwort? Ausland; Special needs education; Sonderpädagogik; Sonderschulwesen; Inklusion; Student; Students; Disability; Disabilities; Schüler; Schülerin; Studentin; Behinderung; Disease; Krankheit; Sonderpädagogischer Förderbedarf; Intellect; Verstand; Physical handicap; Körperbehinderung; Vergleichende Erziehungswissenschaft; Special school; Sonderschule; Schülerpraktikum; Lebensqualität; Lernleistung; Schulerfolg; Caregiver; Carer; Betreuungsperson; Pfleger; Europa; Bulgarien; Frankreich; Deutschland; Ungarn; Italien; Spanien; Schweden; Großbritannien
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. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01