Meaningfully partnering with youth with special health care needs (SHCN) and families of children with special health care needs (CSHCN) can help Medicaid agencies better support youth and families in meeting their goals for improved health and wellbeing. To understand the broad range of engagement strategies being used by Medicaid agencies across the country, the Center for Health Care Strategies (CHCS), through support from the Lucile Packard Foundation for Children’s Health (LPFCH), conducted a 50-state Medicaid survey. The survey sought to identify how states are engaging families and youth, uncover challenges for meaningful partnerships, and highlight opportunities to strengthen engagement between youth with SHCN and families of CSHCN. CHCS also interviewed nine family-led organizations and Medicaid leadership from seven states to understand how engagement is being implemented at the ground-level, especially in light of the COVID-19 pandemic.

This webinar explored opportunities to strengthen engagement strategies discovered through CHCS’ research, areas of investment identified by LPFCH, and recommendations for effective engagement from Nanfi Lubogo, a family advocate and Co-Executive Director of PATH Connecticut, and Kate McEvoy, Connecticut’s Medicaid director.

YouTube video


I. Welcome and Introduction

Speaker: Courtney Roman, MA, Senior Program Officer, CHCS

C. Roman welcomed participants and provided an overview of the agenda.

II. Remarks from the Lucile Packard Foundation for Children’s Health

Speaker: Allison Gray, MA, Senior Program Officer, LPFCH

A. Gray outlined the rationale behind this work and described LPFCH’s commitment to support meaningful family engagement at all levels of the health care system.

III. Medicaid Family Engagement: 50-State Survey and Interview Findings

Speaker: Courtney Roman

C. Roman reviewed findings from a 50-state Medicaid survey conducted to identify the types of family and youth engagement activities taking place across the country, as well as gaps that could potentially be filled in the future. She shared insights on effective engagement from interviews with nine family-led organizations and Medicaid leadership from seven states.

IV. Connecticut Medicaid and Family Engagement Efforts

Speakers: Nanfi Lubogo, CCHW, CTC, YMHFA, Co-Executive Director, PATH Connecticut and Kate McEvoy, JD, Director, Division of Health Services at Connecticut Department of Social Services

From their respective family and Medicaid perspectives, N. Lubogo and K. McEvoy shared successes and challenges as they work to create meaningful engagement opportunities for youth with SHCN and families of CSHCN in Connecticut. They shared recommendations for how states and families can increase engagement with one another, with particular attention to the ways in which COVID-19 forced families and Medicaid representatives to shift their engagement strategies.

V. Moderated Q&A

Moderator: Courtney Roman

Posted: June 2024