Family Support in Early Hearing Detection and Intervention (EHDI) Systems

Family support has evolved from a buzzword of the 1990s to a concept founded in theory, mandated by federal law, valued across disciplines, and espoused by both parents and professionals. This emphasis on family-centered practices for families of young children with disabilities, coupled with federal policy initiatives and technological advances, served as the impetus for the development of Early Hearing Detection and Intervention (EHDI) programs (Nicholson & Martin, in press). White, Forsman, Eichwald, and Muñoz (2010) provide an excellent review of the evolution of EHDI systems, which include family support as one of their 9 components. The National Center for Hearing Assessment and Management (NCHAM), the Maternal and Child Health Bureau, and the Center for Disease Control Centers cosponsored the first National EHDI Conference. This conference brought stakeholders including parents, practitioners, and researchers from diverse backgrounds together to form a learning collaborative (Forsman, 2002). Attendees represented a variety of state, national, and/or federal agencies and organizations. This forum focused effort on the development of EHDI programs infused with translating research into practices and policy. When NCHAM, recognizing the critical role of family support in the improvement of outcomes for both children and families, created a think tank to investigate the concept of a conference centered on support for families of children who are deaf or hard of hearing in 2005, the “Investing in Family Support” (IFSC) conference was born. This conference was specifically designed to facilitate and enhance EHDI efforts within the family support arena. From this venue, a model of family support was conceptualized and has served as the cornerstone of the IFSC annual conference since 2006. Designed to be a functional framework, the IFSC model delineates where and how families find support. In this article, we will promote and encourage continued efforts towards defining operational measures and program components to ultimately quantify success as it relates to improved outcomes for these children and their families. The authors view this opportunity to revisit the theoretical underpinnings of family support, the emerging research in this area, and the basics of the IFSC Model of Family Support as a call to action. We challenge professionals who work with children identified as deaf or hard of hearing to move family support from conceptualization to practices that are grounded in evidence and ever mindful of the unique and dynamic nature of individual families.