Supporting Parents of Children with Severe Disabilities: An Action Research Project, Andrea Yates
Parents of children with severe disabilities face many challenges. They must adjust to the changes in family dynamics, educational decisions, and the long-term implications of the severity of the disability. This action research project provides a detailed look into the lives of four families of children with severe disabilities. The parent participants shared the challenges they faced in the home, school, and community. Each family told a different story, unique to their family and defined by their child’s individual needs. Yet, among the four families, three themes developed, linking the case studies to one another. First, parents expressed the need for help, whether in the home, school, or community. Second, parents expressed the need for comprehensive and correct information. Third, the parents expressed the need for supports and services that met their child’s and family’s needs. Parents shared ideas for improving in their current struggles, strategies for overcoming the challenges, and their hopes for the future. The implications of this project include the possibility of creating a foundation for further research that will lead to increased support of parents who have children with severe disabilities.
Keywords: severe disability, parents, support, children with disabilities, services, action research, case study.