Understanding the partners in policymaking program and the impact of participation on parents of children with developmental disabilities
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Abstract
Parents are critical partners in the lives of individuals with developmental disabilities; however, they often lack an understanding of available resources or they do not know how to navigate the disability service system to obtain the services they need. Advocacy and leadership skills along with basic knowledge of best practices can assist individuals with disabilities and their families in obtaining the services they need while limiting societal and systematic hurdles which may prevent them from living their lives as fully participating citizens. The Partners in Policymaking program, which exists both nationally and internationally, trains families of children with development disabilities and adults with disabilities to make changes in their lives and in their communities and ultimately become integrated citizens. Previous research into the effectiveness of the program has shown increased advocacy activities of the participants; however, these studies do not seek an understanding beyond the anticipated outcomes nor identify what features may lead to these outcomes. Using grounded theory, a substantive theory is presented to describe program features and identify outcomes of the Partners in Policymaking program in Missouri. Fourteen parents of children with developmental disabilities who participated in the program were selected using theoretical sampling to participate in semi-structured interviews. Inductive and constant comparison is used to interpret the data until saturation of themes was reached. Seven themes are presented as the key elements which made the Partners in Policy program meaningful for the parents which are: (1) being ready, (2) respect, (3) changed perceptions, (4) membership, (5) understanding possibilities, (6) navigating a future, and (7) decreased intimidations. These themes impacted parents in such a way that they were transformed by their participation in the program. Seven themes are presented as the key elements which made the Partners in Policy program meaningful for the parents which are: (1) being ready, (2) respect, (3) changed perceptions, (4) membership, (5) understanding possibilities, (6) navigating a future, and (7) decreased intimidations. These themes impacted parents in such a way that they were transformed by their participation in the program.
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Introduction -- Review of the literature -- Evolution of disability policy and Partners in Policymaking Program -- Methodology -- Results -- Conclusion
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Ph.D.