Why policy is important for disabled children

Abstract

Hewitt–Taylor (2007), in a soon to be published seminal book, explores through a series of poignant vignettes the experiences of children with complex and continuing health needs, their families and the staff who are involved with their care. In doing so she illuminates the lives of these children, stating vehemently that they are, irrespective of their specific medical requirements, first and foremost children with the same rights accorded to all children, able-bodied or not. This gauntlet is picked up in a new review of disabled children’s services, which on behalf of the government, has been undertaken by the Department for Children, Schools and Families (DCSF) and HM Treasury. Aiming High for Disabled Children: Better Support for Families (2007) focuses on three priority areas that are designed to improve the lives of such children, namely better access (to health care) and empowerment, responsive services and timely support and importantly improving both the quality and capacity of services. This new policy has great symmetry with standard 8 of the National Service Framework for Children, Young People and Maternity Services (NSF) (DfES, 2004) in which one of the primary missions is that children and young people who are disabled or who have complex health needs should be supported to participate in family and community activities and facilities. This is important because children with complex health needs have traditionally been poorly served by society. Dickens’ (1859) vivid portrayal of disabled Tiny Tim and his devoted father Bob Cratchet in A Christmas Carol is a poignant legacy of the importance of the societal context of such children and crucially, as finally realized by Ebenezer Scrooge, why they are important.