A different head? Parental agency and early intervention

Abstract

This paper considers the agency and identity of parents of children with Down syndrome within early intervention. It draws upon semi‐structured, conversational interviews with nine parents and the reflections of one of the authors upon their experiences within early intervention programmes. It considers how representations of the deficit model permeate the participation of the parent in this process. It explores the multiple identities of the parents and links these to notions of parental participation within the current policy context of early intervention in England. The notion of parental agency is an implicit driver within the current early intervention programmes, yet it appears to be compromised by the nature of those programmes.

Keywords:

• early intervention
• agency
• identity
• parents
• Down syndrome
• equity

Notes

1. In this paper the term Down syndrome is used instead of Down’s syndrome. This term is increasingly used internationally. For example, after considerable discussion with parents and practitioners it was adopted by the UK government when publishing the Developmental journal for babies and children with Down syndrome (DfES 2006). By removing the ’s the term suggests the syndrome belongs to those to whom the label is attached rather than to a long dead scientist.