Posted March 31, 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.


Take Action to Improve Care Coordination: Join an April 13 Webinar
Families and care providers agree that effective care coordination is an important but elusive goal. Building on the December 2015 national symposium on children with complex conditions, the Catalyst Center and the Lucile Packard Foundation for Children's Health have joined forces to sponsor a webinar discussion about how to promote enhanced care coordination services and better payment options. The webinar will feature a parent's perspective, along with real-life examples from a provider and a payer on how they are creating successful local care coordination systems. Discussion will be based on the report, The Care Coordination Conundrum and Children and Youth with Special Health Care Needs.
Wednesday, April 13
10:30 to 11:30 a.m. Pacific Time
See details about the speakers and register.


CCS Medical Directors Tackle Thorny Issues
If you're familiar with the California Children's Services (CCS) program, you've probably heard the story. A family moves from one county to another and their child's CCS coverage changes or vanishes. A statewide group of CCS medical directors is working to address that issue, and to encourage other improvements in the CCS program. Read more.

April 6: CCS Redesign Advisory Group Meeting
CCS program improvement is among the topics on the agenda (PDF) for the next meeting of the CCS Redesign Advisory Group, scheduled for April 6. See the planned presentation slides (PDF), and the comparison chart (PDF) for the proposed whole-child model that will be discussed. The Assembly Budget Committee recently rejected Department of Health Care Services language on the proposed redesign, and the issue is scheduled to come before the Senate Budget Subcommittee on May 5.

Wednesday, April 6
10 a.m. to 3 p.m. Pacific Time
1400 J Street, Room 204, Sacramento
Dial-in: (888) 921-8686
Passcode: 961-640-6431
Public comment will be taken at the meeting's end.


Inter-agency Care Coordination Is Focus of Next Senate Hearing on Kids with Special Needs
Innovative programs and coalitions that promote inter-agency care coordination at the county level will be featured at the second informational hearing of the Senate Select Committee on Children with Special Needs, which focuses on coordinating care among the state's physical health, mental health, developmental disability, and education systems. Jennifer Kent, director of the Department of Health Care Services, is scheduled to discuss the Department's inter-agency care coordination activities, along with representatives from other state departments and agencies. See the full agenda (PDF) and read more on the Committee website.

The hearing is open to the public and will be live-streamed on the California State Senate homepage and on the California Channel website. After the hearing, a recording will be available on the Senate Media Archive webpage.

Tuesday, April 5
2 to 4 p.m. Pacific Time
Room 2040 of the Capitol Building, Sacramento

State Moves Ahead on Health Homes Program for Medi-Cal Recipients with Complex Needs
The Department of Health Care Services has submitted an initial Health Homes Program State Plan Amendment to the federal Centers for Medicaid and Medicare Services, to phase in a Health Homes program in California beginning in January 2017. Health Homes is an optional benefit in Medicaid that allows states to establish programs that help coordinate access to medical, behavioral health, and other support services for individuals with complex needs. Read the Department's concept paper Health Homes for Patients with Complex Needs (PDF) and see the Health Homes Program website.

In Brief

  • The Department of Health Care Services Stakeholder Advisory Committee will hold a call April 4 to discuss potential agenda items for its May 16 meeting. The Committee advises the Department on its programs, including California Children’s Services. Public comment will be taken at the end of the meeting.
    Monday, April 4
    11:30 a.m. to 12:30 p.m. Pacific Time
    Call-in number: 1-641-715-3276; code 469183#
  • Battle Heating Up Over 'Surprise' Medical Bills


Hospitals Offer Complex Care Clinics to Help Families Cope
The Wall Street Journal takes note of the trend among children's hospitals to open specialty clinics for children with the most complex conditions. These clinics offer a range of services beyond medical care, from nutrition and medical devices to transportation and social services. However, many such clinics operate at a financial loss and are therefore difficult to maintain. The article cites study findings, published in the February Journal of Pediatrics, that families who were enrolled in these programs said they had experienced significant improvement in having their range of health needs met.

Also see: The Missing Piece: Medical Homes for California's Children with Medical Complexity


Feds Affirm Mental Health Parity in Medicaid, Children's Health Insurance Program (CHIP)
The Centers for Medicare and Medicaid Services has issued final regulations that require states and managed care plans to provide Medicaid enrollees and children insured through CHIP the same level of benefits for mental health or substance-abuse treatment that they provide for medical and surgical care. The "final rule" creates consistency between public and private health insurance markets, and parity between mental and physical health treatment services.

In other news:


Telehealth Summit to Feature Talk on Children with Special Health Care Needs
At the upcoming telehealth summit, Jenny Kattlove, who leads The Children's Partnership's work on telehealth, will discuss findings from the 2015 report, Realizing the Promise of Telehealth for Children with Special Health Care Needs, which she co-authored, with funding from the Lucile Packard Foundation for Children's Health.
April 17-19
Kona Kai Resort and Spa, San Diego
Read more and register. Fee.


Approaches to Community Access, Participation, and Engagement for Children with Developmental Disabilities and Their Families
Wednesday, April 20
9 to 10 a.m. Pacific Time
Sponsored by the Maternal and Child Health Life Course Research Network



Report Highlights Quality of Health Care for Children in Medicaid and CHIP
Since 2009, states have had the opportunity to voluntarily report on a set of health care quality measures for children enrolled in Medicaid and the Children's Health Insurance Program (CHIP). The 2015 report (PDF) from the Department of Health and Human Services indicates that California reports on only 12 of 22 possible measures. A blog post from the Georgetown University Center for Children and Families examines the progress of this national report.



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