A Roadmap of Care: Co-producing a Standard of Care Guide with Families of Children with Neurodevelopmental Disorders

For my CHA-Gold Innovation Fellowship project, I would like to work with families of children with neurodevelopmental disorders to co-create a “Roadmap of Care.” This guide would describe, in patient-, family-, and clinician-friendly language, what families of children with neurodevelopmental issues should anticipate along the developmental timeline (from first concerns to a comprehensive care plan), what supports are most helpful for common issues, and how best to access or advocate for these supports. This guide would be more than just a list of resources, it would serve as a formal description of the “standard-of-care” clinicians and families at CHA should work towards for children with neurodevelopmental issues. This guide would be available, in different formats, across CHA to families of children with developmental concerns, their clinicians, and care managers to help them establish a shared understanding of appropriate care goals and plans for these children, and to inform population health algorithms for the CHA ACO.