Posted July 7, 2016

A newsletter to inform advocates for children with special health care needs about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.

Please forward the newsletter and encourage your colleagues and constituents to join the Network.


Webinar: Coordinating Care for Children in Families with Complex Social and Health Needs—Research and Practice
The lives of children with chronic or complex medical conditions often are complicated by psychosocial issues and family problems such as poverty, poor parental health, and homelessness. These children with "social complexity" are among the most frequent and highest-cost users of health care services. Their social vulnerability presents a challenge to providing high-quality care. In this webinar, two leaders will discuss their research and clinical experience with socially complex families. Read more and register.

Wednesday, July 27
9:30 to 10:30 a.m. Pacific Time
Sponsored by the Catalyst Center and the Lucile Packard Foundation for Children's Health

Webinar: ACOs, DSRIP and Medical Homes Tools & Toolkits: Three Perspectives on Creating Process and Standards for Care Coordination
Thursday, July 21
10 to 11 a.m. Pacific Time
Hosted by Care Navigator, Inc.
Learn how to choose tools to include in care coordination toolkits, and how to effectively communicate the value of these tools to care coordinators.
See details and register.


Due July 13: Comments on State's CCS Redesign Documents
The state's plan to implement its whole-child model by moving some children covered by CCS into managed care continues to go forward. On June 29, the CCS Advisory Group discussed six draft documents and an implementation timeline released by the Department of Health Care Services (DHCS). The state will accept public comment on the draft documents until July 13. Send comments to See more on the Advisory Group website.

Health Committee Passes CCS Bill
In related news, the Assembly Committee on Health on June 28 unanimously passed Senate Bill 586, with the amended language proposed by advocacy groups. The Department of Health Care Services has released its point-by-point responses (PDF) to the advocates' amendments. The bill now moves to the Appropriations Committee. See a recording of the hearing and read more.


Medi-Cal Marks Half-Century; Symposium to Examine Needed Reforms
Fifty years ago California launched its Medi-Cal program to provide health coverage to various groups, including individuals with disabilities. Today, Medi-Cal is the state's largest health insurer, covering one in three Californians, including half of the state's children and most children with special health care needs. While the program has been a boon to many who previously had no health care coverage, a new report from the California Health Care Foundation explores reforms that are needed to ensure that Medi-Cal consistently delivers excellent service in a cost-effective manner. An upcoming Sacramento briefing will discuss the report's recommendations.

Briefing: The Future of Delivery System Reform in Medi-Cal
Wednesday, July 13
12 to 2 p.m. Pacific Time
California Chamber of Commerce, 1215 K Street, 14th Floor, Sacramento
Read more and register.

Also see: A timeline of Medi-Cal's 50 years, an opinion piece on the program's possible future, and the work of the Medi-Cal Children's Health Advisory Panel, which advises the Department of Health Care Services on policy and operational issues that affect children covered by Medi-Cal.


Preparing for Adulthood: Meet the Single Mom Who Raised 11 Children with Special Health Care Needs
Ten years ago, My Flesh and Blood, a documentary about Fairfield, California-based Susan Tom and her 11 children with special needs, was broadcast. Since then, her home has undergone an Extreme Makeover, and her children are now adults. Read an interview with Susan discussing the transition of her kids to adult health care and making legal and financial preparations for their continued well-being.


Reminder: Upcoming Webinar on Applying for 'Designing Systems That Work' Grants
This webinar will provide an overview of the RFP process. The grants will support development of single-topic issue briefs on subjects addressed at the national symposium sponsored by the Foundation on December 7-8, 2015.
Tuesday, July 12
11 a.m. to 12 p.m. Pacific Time; 2 to 3 p.m. Eastern Time
Letters of Interest due: August 12; Proposals due: September 15


  • Sick Before Their Time: When diseases that typically occur in adults affect children, diagnosis, treatment, and recovery can be daunting. Advice from families, patients, and other experts can ease the journey. – Neurology Now
  • Novel TherapiesComplex Child:
  • The Healthy Children Show: Giving Liquid Medicine Safely – American Academy of Pediatrics


Public Comment Sought on National Autism Spectrum Disorder Plan
The Interagency Autism Coordinating Committee, part of the federal Department of Health and Human Services, requests public comment by July 29 on a proposed 2016 update of its strategic plan. See how to comment.


Taking Care of Yourself as Caregiver
Thursday, July 28
10 to 11 a.m. Pacific Time
Hosted by the USC University Center for Excellence in Developmental Disabilities (UCEDD) at Children's Hospital Los Angeles
Research on mental and physical health of caregivers, setting health goals, and including others in caregiving.
Download the webinar flyer (PDF) and register.



Call for Applications: Innovative and Promising Practices in Pediatric Medical Home Implementation
The National Center for Medical Home Implementation (NCMHI) is seeking submissions about innovative and promising practices in pediatric medical home implementation. Pediatric clinicians, family leaders, community-based organizations, and state agencies working on pediatric medical home initiatives are encouraged to apply to have their projects featured on the NCMHI website and promoted through the national NCMHI listserv. Read more and apply.



Let us know what's happening with your organization or family. Email Program Associate Danielle DeCosta at with your news or updates. Newsletter Editor: Eileen Walsh