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Progress Made in Adoption of Standards of Care for CSHCN; Technical Assistance Offered to States
The federal Maternal and Child Health Bureau (MCHB) has included a report from the Lucile Packard Foundation for Children's Health as part of its guidelines to be used by states in applying for Title V funding. Standards for Systems of Care for Children and Youth with Special Health Care Needs, produced by the Association of Maternal and Child Health Programs, outlines a national consensus on what is necessary for a high-quality, coordinated system of care for children with special needs. The report's inclusion in the MCHB guidelines is a step toward national adoption of the standards. See page 6 of the guidelines (PDF).
In addition, AMCHP, with support from the foundation, is offering technical assistance to states interested in using the standards to improve their care delivery systems. State teams comprising Title V directors and their key partners will take part in an Action Learning Collaborative aimed at strengthening systems for CSHCN. Applications are due August 29. Read more (PDF).

The guidelines also are noted in the Maternal and Child Health Navigator, published by Georgetown University, which provides learning opportunities for maternal and child health professionals. Read more.


CCS Stakeholder Meetings
  • The CCS Stakeholders, representing 39 organizations from around the state, met for the third time on July 25 in Oakland to discuss development of a regional CCS model that would be effective in a managed care environment. For more information about this group or to be placed on the distribution list, contact Meetings are open to the public and through a call-in number. The next meeting will be in September or October.
  • On August 5, CCS stakeholders convened by Assemblymember Richard Pan, MD, chair of the Assembly Health Committee, met for a second time. This group includes representatives from families, children's hospitals, county health executives, child advocacy groups, foundations, health plans, providers, and the Department of Health Care Services. For information about this group, contact Dr. Lisa Chamberlain at


State: Applied Behavioral Analysis a Medi-Cal Benefit
At a meeting of the Senate Select Committee on Autism & Related Disorders on August 5 the Department of Health Care Services announced that children insured by Medi-Cal are entitled to coverage of the therapy known as Applied Behavioral Analysis. Details are being worked out, but coverage possibly will be retroactive to July 1, officials said. DHCS is developing implementation plans and a website, and will schedule a meeting for stakeholders. Read more.

Foundation Proposes Additions to State's Medi-Cal Quality Measures
The Lucile Packard Foundation for Children's Health has responded to a request from the Department of Health Care Services (DHCS) for comment on its proposed 2015 Performance Measures (PDF) for Medi-Cal Managed Care. The foundation noted the importance of including the rate of children with a medical home, the rate of standardized developmental screening and referral for services, and the rate of annual dental preventive check-ups. Read the foundation's letter (PDF).

Department of Health Care Services Opposes Medi-Cal Children’s Health Advisory Panel
On July 25, the Department of Health Care Services (DHCS) sent a letter to Assemblymember Richard Pan, MD, opposing his bill, AB 357, which will create the Medi-Cal Children’s Health Advisory Panel as a successor to the Healthy Families Advisory Board. The Healthy Families program has been eliminated and the children it covered have been transferred to Medi-Cal managed care. The DHCS letter indicated that an advisory panel devoted specifically to children is unnecessary, as their concerns would be covered in an existing DHCS stakeholder group. At a July 31 meeting of the Advisory Panel, DHCS representatives encouraged panel members to join other groups such as the Medi-Cal Managed Care Stakeholder Advisory Group. The Department recently established a Stakeholder Engagement Directory. Read the Department's letter (PDF). Also see a California Healthline article.

Also See:  




Sept. 19 Deadline for Proposals to Enhance Local Care Coordination
Proposals for a second phase of grant funding for the California Community Care Coordination Collaborative (5Cs) are now being accepted by the Lucile Packard Foundation for Children's Health. The Collaborative's goal is to improve community systems of care coordination for children with complex or chronic medical conditions. Proposals are due September 19. Read the Request for Proposals. Find information about the work of current 5Cs grantees.



Pediatricians Sought for Family-Centered Care Pilot Project; Applications Due Aug. 15
Thirty pediatricians will be selected to participate in a Family-Centered Care Pilot Project sponsored by the American Academy of Pediatrics and Family Voices in association with the Maternal and Child Health Bureau. Participants will gather feedback from families they serve regarding perceptions of family-centered care. The pilot project involves administering a newly developed Family-Centered Care Assessment for Families (FCCA-F) and participating in a series of educational offerings related to family-centered care. The goal is to increase pediatricians' knowledge of concepts and strategies related to family-centered care. Applications are due by August 15. Read more (PDF).

Another useful resource:
  • Financial issues are the topic of the August edition of Complex Child, a newsletter produced by parents of children with special needs.


The Road to Evidence-Based Decision Making: Steps for Using Research to Inform State Policy
August 14, 2014
11 a.m. to 12:30 p.m. PDT
National Academy for State Health Policy
Speakers will discuss a new tool to assist policymakers and advocates in using research to support their work. Register.





Between 2007 and 2011, nearly 10,000 children ages 0-19 in California were diagnosed with cancer. Over the last decade, leukemia consistently has been the most common type of cancer among children in the state, with the majority of the diagnoses occurring before age 15. From 2001-2011, the five-year survival rate for leukemia, 79.1%, was similar to the general survival rate for childhood cancers, 80.2%. See cancer data for your county as well as other data about the health and well-being of children in communities across California on

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