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


Under Way: CCS Redesign Stakeholder Process
Many questions arose at the first meeting of the CCS Redesign Stakeholder Advisory Board, held December 2 in Sacramento. Among them: How will the state define success for the redesign process? Can the idea of moving CCS children into managed care be taken off the table? How does the redesign fit with the overall 1115 waiver? Will the Department of Health Care Services release more data on the CCS program? Such questions are expected to be answered over the next several months as the UCLA Center for Health Policy Research facilitates the redesign project, including conducting a series of advisory board meetings. UCLA is charged with making a series of recommendations on a redesign to the Department of Health Care Services, in conjunction with the advisory board.

The December 2 meeting featured an overview of the redesign process, updates on trends in CCS, and presentations on two ongoing CCS pilots. More information about the meeting and the advisory board will be posted on the redesign website, officials said. The agenda and slide presentations are posted there now, along with other background information. The next advisory board meeting is tentatively scheduled (PDF) for Friday, January 23. Write to CHPR_CCS@em.ucla.edu to be informed of future developments, or check the website for updates.

Models for CCS Redesign Submitted to State
The Bay Area Stakeholders Group, which has met over the past year, has sent its recommendations for CCS redesign to the Department of Health Care Services. The group developed three models for the Department to consider during its redesign deliberations. Read the proposals (PDF).

Also see: Key Components of a System for Publicly Financed Care of CSHCN in California



Foundation Grants Aim to Support Families, Boost Advocacy
Three grants awarded November 11 by the Lucile Packard Foundation for Children's Health are designed to help families monitor and manage care of their children with special health care needs. A fourth grant will support development of action plans to address policies that affect the health of CSHCN. Read grant details (PDF).
A Second Look: How Families Experience the System of Care
In 2009, researchers commissioned by the Lucile Packard Foundation for Children's Health conducted in-depth interviews with families of children with special health care needs to identify patterns of how they interact with the system of care. The goal was to develop models that might provide guidance for creating a better system. In a new study, parents and care providers reviewed these models to assess their accuracy in describing families' experiences and their usefulness for promoting system change. Read more.


Now Online: Webinar on Health Homes for Patients with Complex Needs
Health Homes is an optional Medi-Cal benefit that would coordinate access to care and support services for patients with complex needs. The Department of Health Care Services held a webinar November 17 to explain how the state envisions rolling out a health homes program. The webinar presentation and the state's draft health homes concept paper are now available online. Comments and questions should be addressed to HHP@dhcs.ca.gov.

Monthly State Meeting on Behavioral Health Treatment
Friday, December 19, 2014
3 p.m. to 5 p.m. Pacific Time
Department of Health Care Services
1500 Capitol Avenue, Auditorium, Sacramento
Find minutes of prior meetings and additional information on the webpage or write to ABAinfo@dhcs.ca.gov.



House Passes "ABLE" Act to Allow Tax-Free Savings Account
In a success for advocates, legislation passed by the House of Representatives on December 4 would allow individuals with disabilities to establish tax-free savings accounts in which they could deposit up to $14,000 annually, up to $100,000. The savings, which could be used for education, health care, transportation, housing and other expenses, would not jeopardize eligibility for government benefits, and Medicaid (Medi-Cal in California) coverage could be retained. To qualify, a person would have to be diagnosed by age 26 with a disability that results in "marked and severe functional limitations." The legislation now moves to the Senate. Read more.



  • Ability Tools helps people with disabilities find assistive technology devices to enable them to live, work, learn and play as independently as possible.
  • The December edition of Complex Child focuses on wheelchairs and strollers.


Study Explores Preventing Hospitalization of Children with Medical Complexity
Children with medically complex conditions account for disproportionately high hospital use, and it is not known whether hospitalizations can be prevented. A new report published in Pediatrics examines the findings of studies on potentially preventable hospitalizations and interventions to reduce hospitalizations. Read more.





Forum on Delivery System Reform Incentive Payment (DSRIP)
Wednesday, December 17, 2014
10 a.m. to 2:30 p.m. Pacific Time
CSAC Conference Center
1020 11th Street, Second Floor, Sacramento
California HealthCare Foundation, Blue Shield Foundation, and Department of Health Care Services

California's Delivery System Reform Incentive Payment (DSRIP) aims to better integrate and organize care delivery in public hospital systems, and to improve patient health outcomes. This forum will bring experts together to discuss the future of the program. Read details and register.

ABCs of Quality Improvement
Six sessions: February-May 2015
The Family Voices National Centers for Family and Professional Partnerships and the National Institute for Children's Health Quality

A six-session webinar course to build the quality improvement capacity of families and professionals working together to improve systems, services, and supports for CYSHCN, and to apply these skills to a real-life project. Apply by December 19. Read more.



Access to Health Care Is Goal of Grants for Pediatricians
Grants of up to $10,000 for pediatricians and fellowship trainees and $2,000 for pediatric residents are available from the Community Access to Child Health (CATCH) program for initiatives aimed at ensuring that all children, especially underserved children, have medical homes and access to health services not otherwise available in their communities. Applications will be accepted until January 30, 2015. Find out more.



Save the Date: 13th Annual Family Voices of California Health Summit and Legislative Day
March 16-17, 2015
Holiday Inn Capitol Plaza, 300 J Street, Sacramento
The statewide Health Summit and Legislative Day brings together families, youth, providers, policymakers, advocates, state agencies, insurers and other stakeholders to identify and address the health challenges of children and youth with special health care needs. Learn more.

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