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Strengthen the Evidence for Maternal and Child Health Programs

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Association of Maternal and Child Health Programs. 2020. Iowa's Title V CYSHCN program: Using the national standards to build Family leadership and partnership. [Washington, DC]: Association of Maternal and Child Health Programs; [Portland, ME]: National Academy of State Health Policy, 3 pp.

Annotation: This case study examines how Iowa's Title V Children and Youth with Special Health Care Needs (CYSHCN) program has implemented the National Standards for Systems of Care to build family leadership and partnerships. The program, influenced by disability rights advocate Julie Beckett (mother of Katie Beckett, for whom the Medicaid waiver was named), uses the National Standards as a framework to ensure families are active partners in decision-making at all levels of care. Key initiatives include the Iowa Family Leadership Training Institute (IFLTI), which has trained over 50 parents and caregivers since 2016 in advocacy skills, and the Iowa Family Advisory Council (FAC), established in 2014 to guide policies and programs. The program utilizes both Version 1.0 and 2.0 of the National Standards to help families advocate within health systems and to assess program performance, with a particular focus on ensuring culturally and linguistically appropriate care coordination. The case study also demonstrates how embedding these standards throughout practices helps promote family perspectives in care systems and supports peer-to-peer family support networks.

Keywords: Title V programs, Standards, Case studies, Iowa, Family support services, Children with special health care needs
   

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