Parents of children who are deafblind face challenges in fostering collaboration within individualized education program teams

Abstract

Although active parent involvement is mandated as part of the Individuals with Disabilities Education Act (IDEA), parents continue to report dissatisfaction with Individualized Education Program (IEP) meetings. Despite increases in parent participation policy since the adoption of IDEA, the parent–professional partnership originally envisioned by lawmakers is arguably not consistent with practice. This is evident for all families with children who represent the 13 disability categories covered under the auspice of IDEA; however, because deafblindness is a low-incidence disability with a heterogeneous population, this study focuses on families with children who are deafblind. Parents of children who are deafblind have unique challenges before, during, and after IEP meetings. Professional knowledge about deafblindness is often lacking, thereby requiring families to gain and share knowledge on their own. The purpose of this phenomenological qualitative study was to gain an understanding of what leads parents to develop advocacy strategies, and how parents view collaboration. Fourteen mothers of children who are deafblind were interviewed about the unique and essential perspectives that they have concerning IEP team meetings and collaboration. The following questions were posed:

RQ: What experiences lead parents of children who are deafblind to develop and use collaborative skills with their child’s IEP team?

The challenges parents experience falls into two distinct themes: (a) challenges associated with the deafblind population in schools and (b) challenges with the IEP process. Parent views on collaboration are also discussed. Educators who read this study will better understand the unique experiences of parents of children who are deafblind in IEP meetings.