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


CEO of California Children's Hospital Association
talks about CCS redesign, CHIP

Ann-Louise Kuhns usually has children with special health care needs on her mind, but never more than now when the California Children's Services program is undergoing a major transformation and funding for the Children's Health Insurance Program remains uncertain. Read more.
The Missing Piece: Medical Homes for Children
with Medical Complexity

Eleven medical centers in California have developed clinics aimed at delivering comprehensive, quality care to children with medical complexity. These children depend on multiple pediatric subspecialists, are medically fragile and are particularly dependent on care coordination to maintain stable health. Although the clinics meet a complex and growing need, they face a wide range of challenges in sustaining their work. A new report funded by the Lucile Packard Foundation for Children's Health examines the various clinic models around the state and offers a case for stronger support and collaboration to assist these vulnerable children. Read the report.



State's CCS Redesign Process Under Way—Next Up: Choosing an Advisory Group
The official state process for seeking stakeholder views on the California Children's Services redesign launched September 26 with a webinar during which officials explained how the process will proceed. The UCLA Center for Health Policy Research will manage the process, and full details are available on a new website, including a recording and slides (PDF) from the September 26 webinar. The slides outline the goals of the process and the timeline. UCLA and the Department of Health Care Services (DHCS) are in the process of selecting 25 stakeholders to serve as a redesign advisory board. To nominate a board member, or if you have other questions and suggestions about the redesign, write to the UCLA CCS Redesign Team at CHPR_CCS@em.ucla.edu.

Contribute Your Comments on Key Elements for CCS
The Lucile Packard Foundation for Children's Health has issued a paper outlining the key issues and decisions that might arise as the CCS redesign proceeds. The Foundation is compiling comments on the paper, A System for Publicly Financed Care of CSHCN in California, and will include them in its stakeholder comments to the State. Send your comments to janis.connallon@lpfch.org.

Meeting Tomorrow: Local CCS Stakeholders Continue Work on Model
A CCS Stakeholders Group that has met over the past several months in Northern California will meet in Oakland on October 3 to continue development of a regional model to provide effective care coordination to CCS clients. The group plans to submit their proposal to the State. The meeting, from 9 a.m. to 11 a.m., is open to the public, but an RSVP is requested. To attend, or to receive more information about this group, contact Will.Hickling@acgov.org. You also may participate through a call-in number, (888) 675-2535, access code 3620086.



Providers Cite "Crisis" in Dental Care for Some Children with Special Health Care Needs
A decreasing number of facilities in California are willing to provide dental care for children on Medi-Cal who require anesthesia, leading to what a trustee for the California Dental Association called a “dramatic” lack of access, according to an October 2 article in California Healthline. Assemblymember Dr. Richard Pan is pressing the Department of Health Care Services to address the problem, which results in part from low reimbursement rates. Read more. Also see an issue brief, Dental Care Access for Children in California: Institutionalized Inequality.

Medi-Cal Autism Coverage—Next Stakeholder Meeting on October 16
The Department of Health Care Services (DHCS) is hosting a series of stakeholder meetings regarding Behavioral Health Treatment as a covered Medi-Cal service for children with autism spectrum disorder. A recording of the first meeting, held on September 4, is available. The next meeting is set for Thursday, October 16, from 3 p.m. to 5 p.m. at 1500 Capitol Avenue, Sacramento, in the Auditorium. To attend in person, or to receive information about participating in a teleconference, write to ABAinfo@dhcs.ca.gov. See background information at resources and materials for stakeholders.

DHCS also has produced a document, What to Expect if You Suspect or You Have Been Told Your Child has Autism Spectrum Disorder (PDF). Comments may be sent to Advisorygroup@dhcs.ca.gov by October 7.

Also, Autism Deserves Equal Coverage has created a guide to obtaining coverage (PDF) that is available in English, Spanish and Chinese. Contact Support for Families for translation assistance.

Governor Signs Bills Affecting CSHCN
  • AB 1174—Requires Medi-Cal to pay for dental services delivered by teams of hygienists and dentists connected through the Internet. Children's advocates backed this bill. Read more.
  • AB 505—Requires Medi-Cal managed care language assistance services.
  • SB 18—Accepts $6 million from The California Endowment to assist with Medi-Cal enrollment renewals.
  • SB 267—Extends exemption for eligible students with disabilities from the State requirement to pass the high school exit examination.


How to Prepare Teens for Adult Care
In the 2009-10 National Survey of Children with Special Health Care Needs more than 50 percent of parents said no one had talked to them about the upcoming need for their children to see adult providers. Abigail Nye, M.D., director of transition medicine at Cincinnati Children's Hospital Medical Center, offers 10 questions parents should help their children prepare to answer before making the complex transition. See the questions.



  • Children's Regional Integrated Service System (CRISS) Fall 2014 newsletter highlights What Siblings Would Like Parents and Service Providers to Know. Read the newsletter (PDF).


Sacramento Briefing: Monitoring Access to Care for Medi-Cal Enrollees in a Time of Change
Thursday, October 16, 12 p.m. to 2 p.m.
California HealthCare Foundation
California Chamber of Commerce Conference Room
1215 K Street at Esquire Plaza, 14th Floor
Sacramento, CA 95814
A briefing to discuss new research on enrollees' access to care prior to implementation of the ACA. The findings serve as an important baseline that enables policymakers and the public to monitor access to care now that the ACA is in effect. Register to attend online, in person or by phone.

Two Conferences on Palliative Care: The Inclusion Collaborative State Conference
October 23-24, 8 a.m. to 4:30 p.m.
San Mateo County Office of Education
101 Twin Dolphin Drive
Redwood City, CA
Join nationally recognized educators and researchers to learn and share innovative, evidence-based strategies, tools and models to support full inclusion of young children with disabilities in diverse settings. Learn more and sign up here.



Get the Data You Want: Take the Kidsdata.org Survey
Kidsdata.org promotes the health and well-being of children in California by providing easy to use local data, including data on children with special health care needs. Kidsdata, a program of the Lucile Packard Foundation for Children's Health, is surveying users on ways to make the site even more useful. Take the survey.



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