Local authorities and the education of young people with sickle cell disorders in England

Abstract

The successful inclusion of minority ethnic pupils with sickle cell disorders (SCD) raises a number of challenges for educational systems. In England, local education authorities were important drivers for innovative responses to complex needs and the former Inner London Education Authority produced guidance in 1989 on SCD in schools. Local education authorities, however, have been superseded by centralised curricula on the one hand and by local management of schools on the other. We know little about the impact of these changes on managing chronic conditions such as SCD. A survey was conducted with 107 local authorities in England to assess responses to needs of pupils with SCD. The majority of authorities did not know the numbers of children with SCD under their jurisdiction, even though most agreed with government guidance that all such children should have individual healthcare plans. Only two had policies on SCD and most authorities referred to generic guidance on pupils with medical needs in schools. The paper concludes, however, that such generic guidance fails in a number of ways to meet the needs of young people with SCD, in terms of prevention, challenging disability discrimination and, crucially, in failing to recognise how ethnicity and racism mediate the experiences of young black disabled students. Developing policies suitable for the education needs of young people with SCD would also help develop the very narrow guidance currently suggested for inclusion of pupils with medical conditions.