Skip to content

On December 7-8, 2015, the Lucile Packard Foundation for Children’s Health organized a national symposium entitled, “Designing Systems That Work for Children with Complex Health Care Needs.” Children with complex health care needs are a sentinel population for shortcomings in the organization and financing of children’s health care in the U.S.

This invitational symposium identified and discussed issues within the general child health care system that have particular salience for the care of children with complex health problems. It provided a forum to learn from those making progress on these issues as well as those working in adult health care and health policy. Participants engaged in dialogue to identify solutions to the issues, make recommendations for adoptions of those solutions in practice, programs, and policy.

Stage Setting and Session 1: Families of Children with Health Complexity

At 1:19 – Rylin Rodgers, BA, Indianapolis, IN (download slides)
At 19:07 – Cindy Mann, JD, Washington, DC—Speaker (download slides)
At 43:42 – David Keller, MD, Denver, CO—Discussant (download slides)
At 57:15 – Carolyn Langer, MD, JD, MPH, Quincy, MA—Discussant (download slides)
At 1:18:45 – Charlie Homer, MD, MPH, Washington, DC—Facilitator, questions and comments

Session 2: Risk Assessment and Tiered Care

At 1:55 – Chris Feudtner, MD, PhD, MPH, Philadelphia, PA—Speaker (download slides)
At 33:15 – Simon Hambidge, MD, PhD, Denver, CO—Discussant (download slides)
At 51:35 – Rita Mangione-Smith, MD, MPH, Seattle, WA—Discussant
At 1:02:55 – Patrick Conway, MD, MSc, Baltimore, MD—Facilitator, questions and comments

Session 3: Care Planning and Coordination

At 5:45 – Chris Stille, MD, MPH, Aurora, CO—Speaker (download slides)
At 29:50 – Alan Glaseroff, MD, Palo Alto, CA—Discussant (download slides)
At 50:35 – Dennis Kuo, MD, MHS, Little Rock, AR—Discussant (download slides)
At 1:06:50 – David Labby, MD, PhD, Portland, OR—Facilitator, questions and comments

Session 4: Supporting Self-Management

At 1:30 – Paula Lozano, MD, MPH, Seattle, WA—Speaker
At 30:30 – Amy Houtrow, MD, PhD, MPH, Pittsburg, PA—Discussant (download slides)
At 51:15 – Susan Edgman-Levitan, PA, Boston, MA—Discussant
At 1:12:35 – Judy Palfrey, MD, Boston, MA—Facilitator, questions and comments

Session 5: Models of Co-Management and Team Care

At 2:25 – Timothy Ferris, MD, Boston, MA—Speaker (download slides)
At 27:25 – Jennifer Lail, MD, Cincinnati, OH—Discussant (download slides)
At 43:25 – Peter Boling, MD, Richmond, VA—Discussant (download slides)
At 1:04:50 – Debra Waldron, MD, MPH, Washington, DC—Facilitator, questions and comments

Session 6: Costs, Financing and Payment for Complex Care

At 1:40 – Catherine Anderson, MPA, Driggs, ID—Speaker (download slides)
At 28:10 – Christopher Born, MBA, CPA, Houston, TX—Discussant
At 46:20 – Suzanne Fields, MSW, College Park, MD—Discussant (download slides)
At 1:07:30 – Suzanne Fields, MSW, College Park, MD—Facilitator, questions and comments

Related Grants

Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This fact sheet explains the methods used in a study of California caregivers of CYSHCN, including the study’s purpose, survey instrument, sample, survey distribution, data analysis, and more.