Navigating the System as a Family of a Child with a Developmental Disability or Health Condition
摘要
This chapter explores the challenges faced by families of children with developmental disabilities or health conditions as they navigate fragmented support systems across medical, educational, social, and community services. It highlights the crucial roles played by care navigators, case managers, family navigators, and disability advocates, emphasizing how their coordinated efforts can ease family burdens and enhance well-being. Using interdisciplinary care models and visual service maps, the chapter shows how collaboration reduces redundancies, aligns therapy and educational goals, and adapts to family needs—an approach proven especially vital during the COVID-19 pandemic. The authors critique traditional system-focused metrics and advocate for family-centered outcomes, such as children’s participation in valued activities and families’ ability to manage responsibilities, measured through both quantitative and qualitative feedback. The chapter calls for routine inclusion of family voices in policy, integrated funding, and efforts to reduce inequities. Ultimately, it argues for service integration that supports everyday family life and child development, grounded in families’ lived experiences.