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Network News

Improving Care Coordination
The California Community Care Coordination Collaborative launched its work with an introductory webinar on April 9 that featured presentations by each of the participating coalitions. The goal of the Collaborative, which includes Network members, is to improve the quality of care coordination for children with special health care needs by providing a structured opportunity for leaders to learn from one another, identify areas of shared need, discuss emerging challenges and connect with others engaged in this work. All of the coalitions have begun work. In June, they will come together at the Lucile Packard Foundation for Children's Health, which is funding the project, for their first all-day meeting. As the work of the Collaborative develops, we will post resources and information about care coordination.

National Health Policy
Research and Policy
Child health research and policy featured prominently in the news this week as thousands of child health specialists convened in Washington D.C. for the Pediatric Academic Societies Annual Meeting. Many of the presentations focused on children with special health care needs.

Dr. David Alexander and Dr. Edward Schor of the Lucile Packard Foundation for Children's Health joined Prof. Dana C. Hughes of the University of California-San Francisco to lead a workshop on "Understanding and Improving Families' Experience with the System of Care for Children with Special Health Care Needs," which included a study of various ways families cope with the complexities of the system to obtain care for their children. Foundation grantee Dr. Christina Bethell of Oregon Health and Science University presented on Shared-Decision Making for Children with Special Health Care Needs. Click here to see the CSHCN research highlighted at the conference.

Coinciding with the conference, the Journal of the American Medical Association's May 1 issue highlights child health research and health policy. Among the must-read articles is an examination of the reasons why child health research is lagging behind adult health research, co-authored by Stanford University child health policy experts Dr. Paul Wise and Dr. David K. Stevenson. "The shift in the epidemiology of childhood illness away from acute infectious diseases to chronic illness and acute injury highlights the need to develop novel research strategies," the authors write.

Pediatric Mental Health Month
Today is Child Mental Health Awareness Day and mental health advocates are raising awareness throughout May – also Mental Health Awareness Month –  using a variety of creative tools, including this provocative quiz and event listings from the Child Mind Institute. Child mental health-related hospitalizations are on the rise in California according to, and a recent study showed that significantly more U.S. children have a neurodevelopmental or mental health disability than a decade ago.

California Health Policy
Families making the transition from Healthy Families to Medi-Cal continue to experience challenges in getting autism, dental and mental health care. California Coverage and Health Initiatives, a state coalition of children's health initiatives, continues to survey families of children who may be experiencing issues with the transition from Healthy Families to Medi-Cal. To take the survey or forward it to a colleague, click here.

Revised Medicaid Policy Statement
American Academy of Pediatrics, April 1, 2013

Complex Puzzle: How Payers Are Managing Complex and Chronic Care
California Health Care Foundation

Special Needs Parenting: 12 Tips For Managing Challenging Behavior
Friendship Circle Blog

Coping with Crisis - Helping Children With Special Needs
National Association of School Psychologists

How To Incorporate Best Practices in Family Centered Care in Your Practice, May 29
Join the American Academy of Pediatrics and its National Center for Medical Home Implementation on May 29 for a webinar on how to incorporate best practices in family centered care. This webinar will provide participants with a clear description of family-centered care and highlight case studies that showcase effective strategies in delivering that care through practice improvements, such as greater use of health information technology, enhanced access to medical professional staff outside regular office hours, feedback mechanisms capturing patient/family experience with care, and including families on advisory boards and as staff. More information.

The Patient & Family Centered Care Conference
Long Beach, Calif., June 3, 2013
The PFCC Conference is a regional opportunity to connect, share challenges, solutions and successes related to PFCC programs in an interactive environment, offered at a financially accessible rate. For more information please contact Libby Hoy at or Mia Arias at To register, click here.

Healthy People 2010 Leading Health Indicators: How Children With Special Health Care Needs Fared
American Journal of Public Health, April 18, 2013

The Transformation of Child Health Research: Innovation, Market Failure, and the Public Good
Journal of the American Medical Association, May 1, 2013

In the News — Children with Special Health Care Needs
A Less-Noticed Consequence of Child Poverty: Poor Health as Adults Data Advisory, May 8, 2013

Childhood Disability Rate Jumps 16 Percent Over Past Decade
American Academy of Pediatrics, May 5, 2013

Policymakers Fail to Address Kids' Health
MedPage Today, May 4, 2013

Healthy Families Transition Causes "Care Gap" Problems, Especially for Children with Chronic Conditions
Merced Sun-Star, May 3, 2013

Health Care's 'Dirty Little Secret': No One May Be Coordinating Care
Kaiser Health News, April 31, 2013

Children With Autism 'Fall Off the Cliff' After Graduation
Good Morning America, April 30, 2013

Keep in Touch
Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at at with your news or updates.