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

As of today, I will be leaving the Lucile Packard Foundation for Children's Health to take a position with the Children's Defense Fund in Oakland. It has been a rewarding experience working with you to improve the system of care for children with special health care needs and their families, and I know that your efforts will continue and succeed. If you have questions or comments, please send them to Eileen.Walsh@lpfch.org. Best wishes for 2015.

– Janis Connallon, Network Manager



CCS Redesign Stakeholder Advisory Board Members Announced; Next Meeting Is January 23
The names (PDF) of the members of the CCS Redesign Stakeholder Advisory Board as of December 18, 2014, now are available on the redesign website. The next meeting of the Board is scheduled for Friday, January 23, at the California Lottery, 700 North 10th Street, Sacramento. Details about the meeting will be available on the website. A "listen-only" call-in line will be available. Write to CHPR_CCS@em.ucla.edu for more information.

Medi-Cal Children's Health Advisory Panel Holds First Meeting
The newly configured panel met for the first time on January 1, following passage of AB 357. Participants noted that one of the main challenges will be to address access issues, including California's low provider reimbursement rates. Senator Richard Pan, author of AB 357, requested that in addition to addressing access, the group consider ways to maximize federal matching dollars, and ways to support school health and telehealth for specialty care. The panel appointed an interim chair, Dr. Ellen Beck, Director of Community Education, Division of Family Medicine, UC-San Diego. Dr. Beck was a long-time member of the Healthy Families Board, the predecessor to this panel. A list of panel members and information about past and future meetings are posted on the Advisory Panel website. Meetings are open to the public.



Second Round of Grants Extends Local Care Coordination Projects
A second phase of the California Community Care Coordination Collaborative (5Cs) got under way January 1, with grants to six groups. The Collaborative provides a structured opportunity for local leaders to work together to improve care coordination for children with chronic and complex medical conditions. Grants have been awarded in Ventura, San Joaquin, Orange, San Mateo, Contra Costa and Alameda counties. The work is funded by the Lucile Packard Foundation for Children's Health. Learn more.

5Cs Members to Present Work in Washington, DC
The work of the first phase of the 5Cs has been recognized with an invitation to speak at the Association of Maternal and Child Health Programs (AMCHP) annual meeting in Washington, DC, on January 26. 5Cs members Rebecca Hernandez from Orange County and Marc Thibault from Kern County will share their experiences in developing countywide, inter-agency coalitions to improve care coordination for children with special health care needs. Barbara Sheehy from Contra Costa County's 5Cs program and Holly Henry, the 5Cs coordinator from the Lucile Packard Foundation for Children's Health, also will represent the 5Cs. Read more (PDF) (scroll down to page 12).



DHCS Stakeholder Survey Results Released
In September 2014 the Department of Health Care Services (DHCS) launched a stakeholder engagement initiative, including a survey regarding the engagement process. The results have been analyzed and DHCS has posted its response, including changes the department plans to make.

Autism Stakeholder Meeting January 22
The monthly meeting regarding Behavioral Health Treatment for children and youth with autism disorders will be held from 3 p.m. to 5 p.m. on Thursday, January 22, at 1500 Capitol Avenue, Sacramento. Recordings and materials from previous meetings now are available on the Department of Health Care Services webpage. Write to ABAinfo@dhcs.ca.gov with questions.



President Signs "ABLE" Act to Allow Tax-Free Savings Accounts
Achieving a Better Life Experience (ABLE) legislation signed by President Obama will allow individuals with disabilities to establish tax-free savings accounts in which they can deposit up to $14,000 annually, up to a total of $100,000, without jeopardizing eligibility for government benefits and Medicaid (Medi-Cal in California). To qualify, individuals must have been diagnosed by age 26 with a disability that results in "marked and severe functional limitations." California now must act to permit establishment of these accounts. Read 10 Things to Know About the ABLE Act.



Health Affairs Briefing Focuses on Child Health, Medical Complexity
The journal Health Affairs held a briefing in Washington, DC, to launch its December issue, which was devoted to children’s health. One of the featured panelists was Jay Berry, MD, MPH, of Boston Children's Hospital, who is the lead author of an article on the needs of children with medical complexity and a grantee of the Lucile Packard Foundation for Children's Health. A video of the briefing, which was sponsored by the Children's Hospital Association and other organizations, now is available.

A Parent’s View of Out of Home Placement
In response to an article from the American Academy of Pediatrics (AAP) regarding out of home placement (featured in our October 16, 2014, newsletter) Lauren Agoratus, MA, parent of a child with multiple disabilities, has written Alternatives to Out of Home Placement for Families. She suggests that the AAP article provides compassionate but incomplete advice. Agoratus is the coordinator for Family Voices-New Jersey, and the central/southern coordinator for the state's Family-to-Family Health Information Center. Read her article (PDF).

Other useful resources:  


Study: Medical Home Enhances Care, Reduces Cost for CSHCN
Children with complex chronic illnesses can receive effective, less expensive care from a clinic that functions as a "medical home" that provides easy access to a team of dedicated health care professionals, according to a study conducted at the University of Texas, Houston, and published in the Journal of the American Medical Association in December. Read about the study.



Upcoming Changes to Medicaid's Home & Community Based Services (HCBS) Regulations
Thursday, January 29, 2015
10 a.m. to 11 a.m. Pacific Time
Childrens Hospital Los Angeles, USC University Center for Excellence in Developmental Disabilities
Read more and register.



2015 Child Health, Education and Care Summit: Building Powerful Partnerships
February 10-12, 2015
First 5 California
Doubletree by Hilton Hotel, Sacramento
Learn more and register.

Submissions Invited for American Public Health Association Meeting
The Disability Section of the American Public Health Association is seeking abstracts on topics related to disability and public health for presentation at the 2015 APHA annual meeting. The deadline for abstract submission is February 11. Read Submission Information.



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.