Posted October 19, 2017

News, policy updates, resources, events, and advocacy opportunities

California Policy

Newly Signed Law Addresses Regional Center Purchase of Service Inequities
Inequities in Regional Center funding of services for non-English speaking clients and clients of color has been a longstanding issue. Newly enacted AB 959 now requires the Department of Developmental Services to maintain a page on its website that includes a list of services purchased or provided to consumers by Regional Centers and descriptions of those services. The 21 individual Regional Centers also must include a link to that page on their websites. The new law also requires that the information be made available in a culturally and linguistically appropriate manner to families or their representatives, with the goal of bolstering more equal access. Read a recent report on this issue and see the text of the new law.

Medi-Cal Children's Health Advisory Panel to Meet
Wednesday, November 1
10 a.m. to 2 p.m. Pacific Time
The California Endowment, 1414 K St, 1st Floor Conference Room, Sacramento
Dial-in: 800-857-9777
Passcode: 9520063 

The MCHAP is a 15-member independent statewide panel that advises the Department of Health Care Services on matters relevant to children enrolled in Medi-Cal. The November 1 agenda includes development of the panel's goals and objectives for 2018, and an update on the recently enacted SB 220 which makes some changes to the panel's composition. Find the agenda and other materials on the panel website.

National Policy

What's Next for CHIP?
Funding for the Children's Health Insurance Program (CHIP) expired September 30, and reauthorization is still under Congressional consideration. Sara Rosenbaum of George Washington University discusses the outlook for the program, which covers nine million children. Read her essay.

California Children's Services

Whole Child Model Timeline for Next Quarter
As the transfer of some CCS children into Medi-Cal Managed Care approaches, the Department of Health Care Services has released an implementation timeline. See the plan (PDF) for October through December 2017.

Family Engagement

Image of GideonThe Catastrophic Diagnosis: A Photo Essay
Read a parent's story and see a photo essay of Gideon, who was diagnosed with West Syndrome, a form of infantile epilepsy. The photographs document the days before, during, and after Gideon's fourth surgery where a bio-plastic plate was inserted and meshed with his skull to replace a section of bone that was lost to infection one-year prior. From Family Voices of California.

Family Partners Help Create System Change
A report on how the National Institute for Children's Health Quality (NICHQ) integrates parents of children with special health care needs into its research projects. Read the report.

Children with Medical Complexity

Whole Child Model Timeline for Next Quarter
A strong team in which the care manager is the clear team leader is the key to success for a newly implemented care management program at Cincinnati Children's Hospital Medical Center, according to a recent update that discusses the lessons being learned as the program is developing. The care management project is part of the CARE (Coordinating All Resources Effectively) program, through which the Children's Hospital Association partners with 10 hospitals around the country on projects aimed at improving outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. Read about this work.


Strategies for Promoting Medical Homes for Hispanic Children
Only 33% of Hispanic children and youth with special health care needs in the US receive and have access to high quality primary care, according to the National Center for Medical Home Implementation. A new report from the Center highlights results from "Salud Para Todos," a project to engage culturally and linguistically diverse familes in their child's care and increase the number of children who receive care in a medical home. The report offers strategies for practices and clinicians, and for state and community organizations. Read the report (PDF).

In Brief


Paid Family and Medical Leave: The Disability Angle
Monday, October 23
11 a.m. to 12 p.m. Pacific Time
Sponsor: The Arc
Details: Speakers will discuss new research by The Arc and the Georgetown Center on Poverty and Inequality (GCPI) that highlights how access to paid leave can promote economic security and stability for people with disabilities and their families.
Read more and register.

Retrofitting the Medical Home for Children with Special Health Care Needs
Wednesday, October 25
12 p.m. to 1 p.m. Pacific Time
Sponsor: Family Voices of California
Details: This webinar will outline the characteristics of the ideal medical home and what steps are needed to strengthen the infrastructure of this conceptual framework. Webinar presenter Mara McGrath, MPH, will share examples of how she's worked with pediatric practices to bring them along in this continuum.
Read more and register.

Communicating With Your Kids: Sexuality And Developmental Disabilities
Wednesday, November 1
12 p.m. to 1 p.m. Pacific Time
Sponsor: Family Voices of California
Details: This webinar will help parents and caregivers become more comfortable discussing sex by covering which topics to address and the most effective ways to talk about this sensitive subject.
Read more and register.


Coming Up: Family Voices National Leadership Conference
Sign up now for the Family Voices 2017 leadership conference, "Weaving a Tapestry of Strength through Diversity," scheduled for November 15-17 in Washington, DC. Read more and register.

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email newsletter editor Eileen Walsh at eileen.walsh [at] with your news or updates.