A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.


Identifying Potential Improvements for CCS, Title V Programs
California is required to conduct a needs assessment every five years to identify priorities for improving children's services funded under Title V, which includes CCS. The current process will determine priorities to be addressed during 2015-2020 and identify the most important and potentially effective changes CCS can make to improve services. The Family Health Outcomes Project at UCSF, which is managing the process, has recently refreshed its website, and information is available about a stakeholder meeting held January 6, along with extensive background material about the needs assessment process. See Resources for 2014-2015 Title V CCS Needs Assessment.

Next Redesign Stakeholder Advisory Meeting
The next CCS Redesign Stakeholder Advisory Board meeting is scheduled for Friday, March 20, in Sacramento, with specific location to be announced. Details about past and upcoming meetings are posted on the website. Write to CHPR_CCS@em.ucla.edu for more information.

Positions Open in CCS Programs
Applications are being accepted for a Health Program Specialist to work in the Title V program on behalf of children with special health care needs in the Systems of Care Division, California Children's Services. See the job description and details about desirable qualifications for this Sacramento-based position.

Also, San Joaquin County CCS is recruiting for a new Medical Director/Assistant Health Officer. See the job description.



Support for Families   Advice from a Veteran Parent-Advocate
In an essay that includes her fantasy of an ideal Boot Camp to train parents to be advocates, Juno Duenas, long-time executive director of Support for Families, suggests that parents become the partner they would like to have: informed and educated, with healthy inner resources and a really good sense of humor. Read her essay.



Encouraging Local Care Coordination
Members of the California Community Care Coordination Collaborative (5Cs) addressed a standing-room-only audience on January 26 as part of the Association of Maternal and Child Health Programs Annual Conference in Washington, DC. The lively presentation highlighted experiences developing countywide, inter-agency coalitions to improve care coordination for children with special health care needs throughout California. Read more.



Coalition Proposes Focus Areas for Medi-Cal Children's Health Advisory Panel
Most of the positions are now filled on the Medi-Cal Children's Health Advisory Panel, which advises the Department of Health Care Services. A list of panel members as of January is posted on the Advisory Panel website, along with information about past and future meetings. March 18 is the scheduled date for the next meeting of the 15-member panel, which is still determining its areas of focus. Following up on the panel's first meeting, the California Children’s Health Coverage Coalition has sent members a letter outlining four options for assessing how children are faring under Medi-Cal. Read the letter (PDF). The March 18 meeting will be from 11:30 a.m. to 4 p.m. at 1500 Capitol Avenue, Sacramento. Call-in number 888-397-5124, passcode: 3612132.

Department of Developmental Services Issues Fact Book
The Department of Developmental Services, which operates the Regional Centers system in California, has just released its new fact book (PDF), which provides data about caseloads, consumers and services.



Congress to Reconsider Two Child Health Bills
Advocates are calling for support of two bills that have been re-introduced after failing to pass last year:
  • The first (H.R. 919 and S-522) would renew the Children's Health Insurance Program, which is set to expire at the end of September. Read an issue brief on the impact of non-renewal on children and mothers.
  • The Advancing Care for Exceptional Kids Act (ACES) (H.R. 546 and S-298), which is supported by the Children's Hospital Association and has bipartisan support, would establish regional health care for children covered by Medicaid, including over state lines. Read one legislator's opinion.
Feds Challenge Ruling on In-Home Care Workers
The Obama administration is appealing a court ruling that blocks regulations aimed at providing minimum wage and overtime protections for in-home care workers. California officials have announced that the state will not provide overtime pay after a federal judge overturned a U.S. Department of Labor rule that would have required minimum wage and overtime pay. Read more.



Building Your Medical Home: An Introduction to Pediatric Primary Care Transformation
The National Center for Medical Home Implementation offers a resource that provides direction and tools for pediatric clinicians seeking to adapt their practices to become medical homes. Family leaders participated in developing the guide, which emphasizes family-centered care. See the website.

Other useful resources:
  • The Arc has created the Center for Future Planning to support and encourage adults with intellectual and developmental disabilities and their families to plan for the future.
  • New Law Gives Former Foster Youth Free Health Care Until Age 26. Read more (PDF).


Webinar Series for Providers: Transition of Patients with Special Health Care Needs to Adult Medical Care
Seven-Part Series – Second segment February 25
New York – Mid-Atlantic Consortium for Genetic and Newborn Screening Services
Designed to give health care providers the tools and understanding necessary to care for young adults with special health care needs who are transitioning from pediatric to adult care providers. Patients and families are encouraged to attend to better understand their role in medical care transition. Learn more and register.



Great Ideas in the Disability World: What Do They Mean for Our Children?
Wednesday, March 4, 2015
7 a.m. to 8 a.m. Pacific Time
Vermont Family Network



8th Annual Developmental Disabilities Public Policy Conference
March 8-10, 2015
Holiday Inn Capitol Plaza Hotel, 300 J Street, Sacramento
The Arc and UCP California Collaboration
Learn more.

13th Annual Family Voices of California Health Summit and Legislative Day
March 16-17, 2015
8:30 a.m. to 5:30 p.m.
Holiday Inn Capitol Plaza, 300 J Street, Sacramento
Learn more and register.

Support for Families 2015 Information and Resource Conference
March 21, 2015
8:30 a.m. to 3:30 p.m.
John O'Connell High School, 2355 Folsom St, San Francisco
In partnership with San Francisco Unified School District and Community Advisory Committee for Special Education
Learn more (PDF) and register.



Let us know what's happening with your organization or family. E-mail Newsletter Editor Eileen Walsh at Eileen.Walsh@lpfch.org with your news or updates.