Introduction: Children and youth with special health care needs (CYSHCN) need, but do not have, adequate care coordination (CC); CC leads to better pediatric care, improved family/professional experience of care, and enhanced population health. Current CC initiatives are promising but lack adherence to emerging definitions/standards. A Lucile Packard Report provides guidelines for using a Shared Plan of Care (SPoC) as a CC approach; studied implementation is needed. Purpose: The studied implementation of the Riley Care Coordination Program (RCCP) set out to: 1) illuminate components of family-centered, interdisciplinary, team-based care/coordination and SPoC, use 2) underscore family participation/engagement 3) reveal implementation processes/lessons learned. Methods: Children (ages 2–10) with neurodevelopmental disabilities were referred by subspecialists; families agreed to participate in RCCP from a children's hospital ambulatory care setting. RCCP team used a five-phase workflow to implement CC: (1) Family Outreach/Engagement 2) Family and Team Pre-Visit Work, 3) Population-Based Teamwork, 4) Planned-Care Visits/SPOC “Co-Production” 5) Ongoing Care Coordination and Community Transfer. Family surveys and SPoC goals informed an evaluation. Results: Children (268) with neurodevelopmental disabilities enrolled/completed the 6-month RCCP; it was a feasible endeavor. The co-produced SPoC supported families/care neighborhood partners to meet goals/unmet needs. Team plan-do-study-act improvement cycles informed RCCP enhancements. Discussion/Conclusion: Eliciting/using family goals to drive CC emphasized family priorities; children/families gained interventions, treatments, confidence and navigation skills. Going beyond episodic, reactive care, RCCP achieved better CC with care neighborhood learning partnerships. Investing in this quality care coordination with fidelity to national standards holds promise.
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