Children with disabilities: A longitudinal study of child development and parent well-being - Introduction

The development of children with disabilities and the adaptation of their families present an array of challenges to researchers, policymakers, practitioners, and parents. For some, the diverse developmental pathways followed by children with disabilities provide important opportunities to expand our knowledge about human variation. For others, the diagnosis of an impairment calls for the formulation of an intervention strategy to promote more positive outcomes. Central to both is the need for greater understanding of how children with disabilities and their families change over time, and why some do better than others. The Early Intervention Collaborative Study (EICS) was initiated in 1985 to address these complex and compelling issues. The EICS is an ongoing, nonexperimental, longitudinal investigation designed originally to address three interrelated goals: (a) to analyze individual differences in the development of children with disabilities and in the adaptation of their families over time, (b) to generate related conceptual models of child and family development that integrate research on children with and without special needs, and (c) to contribute to the knowledge base that informs social policy and the delivery of intervention services. From its onset, the design of the study has been guided by models of human development that are ecological, contextual, and transactional (Bronfenbrenner, 1979; Lerner, 1996; Sameroff & Chandler, 1975) and by an interest in the concepts of vulnerability and resilience (Rutter, 2000; Werner, 2000). The first phase of the investigation, which was described in a previous SRCD Monograph (Shonkoff, Hauser-Cram, Krauss, & Upshur, 1992), focused on the development of 190 infants and their parents during their initial year of participation in a community-based early intervention program. The findings presented in this second Monograph were generated from the continuing sample of 183 participants who were assessed at five points in time, from their entry into an early intervention program during the infant or toddler years through the child's 10th birthday. This investigation represents the largest and longest running study of children with a range of developmental disabilities and their parents ever undertaken in the United States. The richness and the longitudinal nature of these data provide a wealth of opportunities to analyze the interactive nature of child and family adaptation and, most important, to study developmental change over time. The findings presented in this Monograph can be used to inform both theory and practice. In the process of bridging these two domains, the study builds on two complementary historical contexts and addresses two converging agendas for the future.