First Advisor

Correa_Torres, Silvia M.

Second Advisor

Mueller, Tracy Gershwin

Date Created



Although active parent involvement is mandated as part of the Individuals with Disabilities Education Act (IDEA), parents continue to report dissatisfaction with 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 families of all children who represent the thirteen disability categories covered under the auspice of IDEA; however, because of its uniqueness, this study focuses on families of children who are deafblind. Deafblindness is a low-incidence disability with a heterogenous population. Parents of children who are deafblind have unique challenges before, during, and after Individualized Education Program (IEP) meetings. Often there is a lack of professional knowledge about deafblindness, thereby requiring families to gain and share knowledge. Because parent knowledge and advocacy are essential roles, there is need to understand better how parents advocate and share knowledge during the IEP meeting. This study focused on parent-initiated strategies used to increase IEP team collaboration and to address their child’s needs. Currently, there is a lack of research on IEP strategies initiated by parents iv of children who are deafblind. Further, there is sparse research on families of children who are deafblind overall. Thus, this study begins to fill a gap in the research literature. The purpose of this phenomenological qualitative study was to explore the strategies that parents of children who are deafblind use in fostering a collaborative relationship with their children’s IEP teams. To do that, it was necessary to first gain an understanding of what leads parents to develop such advocacy strategies, and how parents view collaboration. Fourteen mothers of children who are deafblind were interviewed about the unique and essential perspectives that mothers have concerning IEP team meetings and collaboration. Open-ended interview questions were used to collect in-depth information as mothers shared their experiences of attending IEP meetings, with the goal of identifying themes regarding their experiences working with IEP teams. Participants were also asked to provide written responses to interview reflection questions. The researcher also journaled through the research process. The following questions were posed: Q1 What experiences lead parents to develop and use collaborative skills with their child’s IEP team? Q2 How do parents define collaboration with their IEP teams? Q3 What knowledge and strategies do parents use in IEP meetings to promote collaboration? The results from this study revealed valuable insights into the various and vital roles that parents play on their child’s IEP teams, including case management, advocacy, and knowledge sharing. Three categories emerged from the data: (a) problems parents experience that lead them to develop advocacy strategies, (b) valued family-school collaboration, and (c) advocacy strategies used by families. The problems parents v experience fell into two distinct themes: (a) challenges associated with the deafblind population in schools and, (b) challenges with the IEP process. Mothers of children who are deafblind shared insight on how they use collaborative strategies to build strong relationships with IEP team members. During discussions about relationship building, participants shared examples of how they use the collaboration principles of trust, respect, communication, advocacy, equality, commitment, and competence (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004). Not only did the mothers in this study indicate that these principles were important, but participants also encouraged professional team members to follow them. Because of the unique needs associated with deafblindness, collaboration between team members who are serving the child is vital to student success. Partnership comes in the form of problem-solving and knowledge sharing and in understanding the impacts of dual sensory loss. Knowledge sharing is reportedly tricky because often, families are the ones most knowledgeable about deafblindness and certainly of their child, yet families sometimes become frustrated because they wish that someone on the team would bring knowledge and ideas back to them. The last category identified how participants advocate and share knowledge through positive, collaborative strategies. Advocacy strategies fell into the following three themes: (a) advocacy through action, (b) advocacy through knowledge, and (c) advocacy through student involvement. There are many roles that mothers play in educational planning including: (a) knowledge sharing, (b) advocacy, and (c) case management. Participants outlined advocacy through action strategies that fell into two categories: (a) direct strategies (e.g. meeting management strategies) and (b) leadership skills (e.g. consensus building, positive approach). This study adds to the scant literature on families of children who are deafblind. The results provide meaningful insight into parent IEP experiences, paying careful attention to the much-neglected area of deafblindness. Participants shared strategies they use when playing these roles. These strategies can be shared with other families to help more families build collaborative relationships with IEP teams. The leadership skills and strategies mentioned in this study also provide families with ideas about how to advocate and share knowledge using a firm, but positive approach. Educators can benefit from reading this study to better understand the leadership role that families play in the IEP meeting and what strategies parents use to build consensus to get their child's needs met. Families and educators can benefit from better understanding of the strategies that mothers employ to increase collaboration and to get their child's needs met. Results from this study may not be representative because of the small sample size and because the deafblind etiology breakdown is more highly weighted toward families who have children with Usher syndrome.


176 pages

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