Posted March 3, 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.


National Report Analyzes Access to Care for CSHCN under Managed Care
As California contemplates moving CCS children into managed care, a new report analyzes how other states have incorporated protections for ensuring access to care for children and youth with special health care needs into their contracts with managed care organizations (MCOs). The report, from the non-partisan Medicaid and CHIP Payment and Access Commission, examines contract provisions in 34 states where MCOs enroll children with special health care needs (CSHCN) in their standard Medicaid plans. The authors found that stakeholders are divided on whether and when general contract provisions that apply to all enrollees afford sufficient protections for CSHCN.


Moving Ahead: Senate Select Committee on Children with Special Needs
Senator Richard Pan, chair of the new Senate Select Committee on Children with Special Needs, has released a summary report (PDF) of the committee's first hearing, which was held on December 1, 2015, along with an issue brief that maps the systems of care (PDF) for children with special needs in the state. The committee’s goal is to break down silos of care and foster better integration of care among mental, behavioral, developmental disability, and physical health care systems. Representatives of each of these systems testified at the December hearing. See a video of the release event, which also features families.

Passed and Signed: Tax Designed to Bolster Funding for Medi-Cal, Developmental Services
A complex and controversial plan to restructure how the state taxes health plans has passed the Senate and Assembly and been signed by Governor Brown. The long-sought "tax swap" offers the potential for the state to secure $1.3 billion in Medi-Cal reimbursements from the federal government and also to boost funding for developmental services, which have been cut substantially in recent years. Implementation still requires approval from the federal government. Read more about the tax and see a video statement from State Senator Richard Pan on the plan's significance for children.

Medi-Cal Children's Health Advisory Panel to Meet
Wednesday, March 16
12 to 3 p.m.
1700 K Street, 1st Floor Conference Room, Sacramento
Dial-in: (800) 988-9522
Passcode: 2895395
See the agenda and other meeting materials on the MCHAP webpage.
The 15-member panel advises the Department of Health Care Services on issues related to children in Medi-Cal, which covers a substantial number of children with special health care needs.

The panel has created a Medi-Cal Children's Health Dashboard (PDF) that provides an overview of health and demographic measures for children enrolled in the program. Information is presented about enrollment, family language, race and ethnicity, immunization rates, dental care, mental health utilization, and consumer satisfaction. Support for facilitation of the panel's work is provided by the Lucile Packard Foundation for Children's Health.

Home-Based Mental Health Services: Not Just for Foster Kids
Clarifying a landmark court decision, the California Department of Health Care Services released a notice on February 5 that all Medi-Cal recipients under age 21 who meet "medical necessity" criteria are eligible for home-based mental health services that were previously limited to youth in the foster care system. Read a Q&A with Patrick Gardner, one of the attorneys on the "Katie A." court case, and see the Department's announcement (PDF).


Feds Tackle Equity for Students of Color with Disabilities
The US Department of Education has proposed a new rule to address disparities (PDF) in the treatment of students of color with disabilities. In a press release the Department noted that students of color are more likely to be identified as having a disability and face harsher discipline than their white classmates. The new rule would require states to implement a standard approach to compare racial and ethnic groups, with reasonable thresholds for determining when disparities have become significant in a district. The district then must provide interventions and have its practices reviewed.


A First: New President of AMCHP Is Parent of a Child with Special Needs
Eileen Forlenza of Colorado is the new president of the Washington, DC-based Association of Maternal and Child Health Programs, the first family leader to assume the role. Read her message about her experiences as a parent and the organization's strategic plan for 2016.


Promoting Solutions to Chronic Dental Disease
In commemorating February as Children's Dental Health Month, The Children's Partnership has created a series of fact sheets in English and Spanish to help ensure that families understand and use their dental coverage.

Other Useful Resources

  • Internal Revenue Service (IRS) Publication 907 (PDF) contains Tax Highlights for Persons with Disabilities for use in preparing 2015 tax returns.


New: Tools to Make Care Coordination 'Work'
The new National Center for Care Coordination Technical Assistance supports the promotion, implementation, and evaluation of care coordination activities and measures in child health across the United States. The center is a collaboration between the National Center for Medical Home Implementation (NCMHI) and the Boston Children's Hospital Integrated Care Program. It is funded by the Maternal and Child Health Bureau. See the "Technical Assistance and Support" heading on the NCMHI care coordination page.


Beyond Kale and Pedicures
Wednesday, March 9
Signal Hill, CA
Hosted by the Children's Institute, Inc.
Strategies to manage Compassion Fatigue and Secondary Trauma for professionals working with highly stressed, low-resource families. Fee. Continuing Education Credit available.
Learn more and register.

Family Voices of California 2016 Health Summit and Legislative Day
March 14-15
Sacramento, CA
Presentations on key policy issues facing children and youth with special health care needs, followed by a day of visiting and building relationships with legislators and their staff in the Capitol. Keynote addresses scheduled from Health and Human Services Secretary Diana Dooley and Senator Richard Pan.
Free for family members. $50 suggested donation for professionals.


The State of California sponsors the California Health and Human Services Open Data Portal, which presents hundreds of data sets from a wide range of state programs, including healthcare. In 2016, state departments will continue to add data to the Portal, which provides tools for visualization, mapping, and exporting, in addition to supporting the development of applications.



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