Researching opportunities for families with medically complex children


Client: Children's Health in Dallas
Roles: Project and Client Management, Research, Interview and Activity Facilitation, Analysis, Content Development, Production, Presentation Facilitation
Deliverables: Project Timeline, Interview Guide, In-Home Activities, Presentation, Summary Report with Insights & Opportunities.



In 2015, the Health & Human Service Commission awarded a Medicaid contract to Children’s Health in Dallas for the STAR Kids Program, a health plan catered to a population of vulnerable families with a medically complex child. Starting in 2016, STAR Kids became the first Medicaid managed care program specifically serving families with children using disability-related Medicaid. In this expansion of Medicaid managed care, Children’s sought to address the customized needs of these families as they relate to coordination of care, health outcomes, access, cost, administrative complexity, preventable events, and long-term services. 



To uncover the unique needs of these families, we partnered with Children’s to recruit and interview families at Children’s Complex Care Clinic. This clinic is dedicated to caring for families who have a child, primarily on Medicaid, with complex diagnoses such as chronic lung disease, rare genetic disorders, congenital heart disease, and behavioral or neurological disorders. I took the design and research lead on this project, collaborating with my colleagues to develop a research plan, interview guides, activities, as well as schedule and facilitate interviews and activities in 17 families' homes — 4 of which were Spanish-speaking only. We worked with a local translator who helped us create activities in Spanish and facilitate these interviews.



Following home interviews, we analyzed findings and developed a comprehensive collection of experiences, gaps, and actionable opportunities for Children's to develop wraparound services for the STAR Kids program. We presented our findings through sharing families' stories, a presentation, and a comprehensive summary report — wherein we encouraged an evolved definition of their child patient to include the entire family—with a particular focus on the unmet needs of Mom. Prioritized opportunity spaces assessed, relieved, supported, and developed Mom as the essential partner in providing the quality care that a medically complex child requires.