CHW National Library

The federal Advancing Care for Exceptional (ACE) Kids Act became law in 2019 and aims to provide access to a high quality, well-coordinated system of care for children with medical complexity (CMC) and their families. This policy brief describes the background on the need for the ACE Kids legislation and outlines three benefits for states that choose to implement it. We focus on patient-centered health home models of care coordination with a comprehensive care plan that addresses all service needs.

This recorded presentation describes Team Minnesota’s plan for helping patients transition from pediatric to adult care. It was originally presented to Gillette Children’s Specialty Healthcare.

These graphics visually depict a patient’s contacts with different services within the health system.

The BU Leadership Team, Team Kentucky, and state team members take a deeper dive into developing impact statements and dissemination materials.

This article describes one health system’s attempt at introducing staff to the lived experience of parents of CMC, from the viewpoint of a parent of medically fragile child. She describes herself as one of many ‘uber’ parents, common in children’s hospitals. Originally published in the Pediatric Palliative Care and Hospice E-Journal.

AMCHP newsletter ‘Pulse’ interview 2021 of Oregon CoIIN Implementation team members.

Sustaining the Family Leader Role focuses on family partnership sustainability within the state teams, strides made thus far, remaining challenges, and possible paths forward. Sustaining family leader engagement in clinical settings and partnership with family-led organizations is about organizational partnerships at its core, and it requires teams to acquire additional financial resources.

Rylin Rodgers (AUCD & CMC CoIIN National Advisory Committee) joins us to discuss launching state team sustainability planning and developing impact statements. The majority of the webinar featured state team breakout room time which was not recorded.

This resource sheet describes Washington-specific and national organizations that provide support for all members of the family.

This document contains summaries of each state’s aims, goals, project plan, target populations, recruitment plan, and elevator speech.