Michelle P. Medicaid Waivers: Exploring Sources of Uncertainty for Parent Caregivers of Children with Disabilities

Guided by Brashers’s uncertainty management theory, the purpose of this study was to better understand the experience of family caregivers utilizing Medicaid waivers to subsidize health care for children with disabilities. Specifically, the focus of this study was to explore caregivers’ experience with Kentucky’s Michelle P. Waiver (MPW), a Medicaid waiver that provides robust benefit offerings to children with disabilities. Little is known about how parents come to know about the waiver, and the communication challenges they experience when applying for and navigating their child’s health care through Medicaid. Data were gathered by narratively interviewing 31 parents of children who are currently receiving services through the MPW. Data were analyzed using narrative thematic analysis. The analysis focused on the community-level communication that contributes to parent caregivers’ uncertainty about the MPW system. Findings show that parents experience unique personal, social, and medical uncertainties related to the MPW when navigating care for their child in the community. This project contributes to the health communication literature theoretically by expanding the conceptualization of the uncertainty in illness framework to include the means of health care (i.e. Medicaid) as a consequential element of an individual’s illness experience.