The importance of awareness and communication for the inclusion of young people with life-limiting and life-threatening conditions in mainstream schools and colleges

Anthea Asprey and Tricia Nash both belong to the Children's Hospice South West Research Group, based at the University of Exeter. In this article, they report one aspect of a research project designed to determine the adequacy of support for young people with life‐limiting and life‐threatening conditions in the education system. They describe here a set of findings drawn from interviews with parents whose children attended LEA‐maintained mainstream schools and colleges of further education. They focus particularly on parents' perceptions of the levels of awareness of their children's needs and concerns and the consequent impact upon their successful inclusion in mainstream education. The findings show clearly that awareness of the needs and difficulties of these young people was seriously lacking. The issue of poor communication, both between school and home and between education and health agencies, was a central concern. Anthea Asprey and Tricia Nash discuss the influence of two models of disability (the medical model and the social model) upon educational practice with regard to these young people. Despite the difficulties reported here, some encouraging and helpful reports of good practice also emerged from the interviews, indicating that inclusion for these young people is not an impossible goal.