Please forward this newsletter to your colleagues and encourage them to join the Network!


Network Survey: Next Steps Toward Care Coordination
Earlier this year, 100 Network members responded to an online survey about how to improve care coordination for children with special health care needs and their families. Most members identified California’s fragmented system of care as the main barrier to effective care coordination. Runners up included inadequate communication among health care providers and inadequate payment for care coordination services. As one member wrote:
"You cannot manage the medical health of the child if you do not manage the social/emotional and community issues affected by the child’s chronic health care need. These services cannot be managed by a single person or even a single institution."

Photo: Clarkston SCAMP via Flickr

Save the Date: Patient and Family-Centered Care Network Webinars and Meeting
The Patient and Family-Centered Care Network, led by Karen Wayman, director of family-centered care at the Lucile Packard Children’s Hospital, will conduct six webinars between Oct. 1-16 and hold a two-day meeting Oct. 28-29. Funded by a grant from our foundation, this Network brings together 20 hospitals and pediatric units in California to share strategies, information and resources to improve patient and family-centered care. The webinars will address how to implement advisory council and parent mentor programs. The events are open to any pediatric unit or children’s hospital in California. For more information, please contact Kendra Gilbertson at


Medi-Cal Managed Care: Legislation Aims to Improve Racial/Ethnic Health Disparities
AB 411, sponsored by Dr. Richard Pan (D-Sacramento), aims to address persistent health disparities by requiring California’s Department of Health Care Services to collect and analyze Medi-Cal managed care plans’ quality measures by ethnicity, geographic region, gender, primary language, and, when available, sexual orientation. This bill is important, among other reasons, because language barriers can present significant problems for families of children with special health care needs. The legislation also raises the expectations of the Department in terms of quality monitoring and reporting. State lawmakers have approved the bill, which is expected to be signed into law by Gov. Jerry Brown. More information>>


Discrimination in Health Care Delivery
The federal government is seeking comments from the public on provisions under Section 1557 of the Affordable Care Act that prohibit discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities. The U.S. Department of Health and Human Services is seeking information to better understand individuals' experiences with discrimination in health programs or activities. Comments are due on Sept. 30. For more information and to submit comments, click here.

New Employment Rights for In-Home Caregivers
New federal regulations will give in-home care workers who assist people with disabilities federal minimum wage and overtime protections. The rule “updates a law dating back to 1974, which treats those who provide in-home assistance as ‘companions’ — much like baby sitters — and does not grant such workers the same rights as other types of employees,” Disability Scoop reports. Read more>>

Federal Letter: Schools Must Maintain Special Ed Services When Children Move
The U.S. Department of Education is reminding America's schools that they have a legal duty to provide special education students who move frequently with comparable services to those received by more stable students. In a recent letter to state directors of special education, Department of Education officials note that the Individuals with Disabilities Education Act requires districts to provide individualized education plans and other services to “highly mobile” students – foster children, children in military families, and migrant and homeless children – as they transition between districts. The letter provides information to assist schools in complying. It also underscores the importance of schools' responsibilities to provide educational support services despite the challenges of serving highly mobile students requiring special education. Read the letter>>

Reconnecting Mouth and Body
In this Health Affairs Blog post, the authors argue that the Affordable Care Act fails to fully meet dental care needs, but that states have the option through their Exchanges to ensure that oral health gains made by children in recent years are not lost. Finding accessible dental care frequently is difficult for families of children with special health care needs. Read the column>>


Parenting Stress Among Caregivers of Children with Chronic Illness: A Systematic Review
Journal of Pediatric Psychology, 9/2013

Improving Post-High School Outcomes for Transition-Age Students with Disabilities: An Evidence Review
U.S. Department of Education, 8/2013


A New Era of Coverage: Maximizing Participation in the ACA
California Pan-Ethnic Health Network
October 2013 (multiple dates and sites in California)

This series of four convenings around California will highlight how local organizations are reaching and educating communities of color about their health coverage opportunities, and share best practices for enrolling special populations, such as immigrants and Limited English Proficient communities. More information>>


The ACA and You: A User’s Guide, 8/2013

Grassroots Tool Kit: How to Be a Champion for Children's Health
Children’s Hospital Association, 9/2013

Policy Brief: The Affordable Care Act and the Intellectual/Developmental Disabilities Community
Autistic Self Advocacy Network, 9/2013

Video: Building a Stronger Pediatric Medical Home
National Center for Medical Home Implementation, 8/23/13

Fact Sheet: The Need for Caregiver Support to Create Truly Family-Centered Care
University of Minnesota School of Medicine, 6/2013



Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at with your news or updates. Newsletter Editor: Eileen Walsh