Posted December 3, 2015

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

Missed a past issue of the newsletter? You can find them all here.


Does Having a Medical Home Cut Down on Hospital Readmission, ED Visits?
Little is known about the relationship between receiving primary care in a medical home and unplanned hospital readmissions and emergency department visits among children with special health care needs. A new study published in the journal Pediatrics suggests that one component of a medical home—having a "usual source of sick and well care"—was the best predictor of avoiding unplanned hospital readmissions. The lead author on the study was Ryan Coller, MD, MPH, and funding was provided through the Lucile Packard Foundation for Children's Health. Read more.


Senate Select Committee Brings Attention to Children with Special Needs
Physical, mental, and developmental health, along with education, were the topics at the December 1 inaugural hearing of a newly established Senate Select Committee on Children with Special Needs. The purpose of the committee is to increase legislators' understanding of how programs and services for children with special needs are organized and delivered, and to identify ways to improve and strengthen the systems. The initial meeting presented an overview of the various systems and how they interact. Representatives from each field, as well as parents and government officials, provided testimony. See details about the committee (PDF) and view the full hearing.

Also see a slide presentation that provides an overview of the systems.

December 10: March in Sacramento to Advocate for Developmental Disability Funding
As state support for developmental services has diminished and programs have closed, advocates have been waging a campaign for a 10 percent across-the-board funding increase for regional centers and their service providers. A march is scheduled for December 10 in Sacramento and other demonstrations are planned throughout the state. Read details about the march.

Also see: Developmentally Disabled People Face Losing Access to Services as Closures Hit and
Disabled Learning Center Closing in Brentwood Rallies Disability Advocates


Wide Range of Stakeholders Testify on Future of CCS at Senate Hearing
State Senators Ed Hernandez and Richard Pan, MD, heard testimony at a Senate Health Committee informational hearing on the future of the California Children's Services (CCS) program in Los Angeles on November 18. Speakers included families who benefit from CCS services, as well as health care providers and Jennifer Kent, director of the Department of Health Care Services. The entire hearing is available for viewing.

Upcoming CCS Workgroup Webinars

Data & Quality Measures Technical Workgroup Webinar
Friday, December 4
9 a.m. to 10:30 a.m. Pacific Time
See the agenda (PDF) and register.

Care Coordination/Medical Home/Provider Access Technical Workgroup Webinar
Friday, December 11
3 p.m. to 4:30 p.m. Pacific Time
Read more and register.


Tomorrow: The Changing Landscape of Care for Children with Special Health Care Needs and Their Families
Friday, December 4
Los Angeles, CA
Sponsored by the Los Angeles Partnership for Children with Special Needs
The program includes discussion of dental care access for children with special health care needs, the redesign of the California Children's Services program, and transition to adulthood.
Download the agenda and registration form (PDF).


FINAL REMINDER: Register for December 7-8 National Symposium Webcast
A live webcast will be available for the major national symposium on December 7-8 in Washington, DC. Experts will discuss how to improve the organization and financing of children's health care, particularly for children with complex conditions. See the agenda and the list of speakers, and register for the live webcast. If you follow along on Twitter, please use the hashtag #SystemsThatWork.

Related: December 9-10 – Institute of Medicine Forum on Children with Medical Complexity
A workshop on ensuring quality and accessible care for children with disabilities and complex health and educational needs will be live broadcast December 9-10. The workshop, which will focus on the main barriers and promising solutions for improving care and outcomes for children, will feature families, researchers, and care providers. The event is sponsored through the National Academies of Sciences, Engineering, and Medicine. Read more and register for the live webcast.


Web-Based Course for Family Leaders: ABCs of Quality Improvement
Five webinars: February-May 2016
Sponsored by the Family Voices National Center for Family Professional Partnerships (NCFPP) and the National Institute for Children's Health Quality (NICHQ)
An online course to teach concepts and best practices of quality improvement and to support participants in implementing an improvement project of their choice, focused on a system, service, or support for children and youth with special health care needs. Webinars are led by a NICHQ faculty member, and teams are mentored in their improvement project through regularly scheduled coaching calls. Applications due December 11. Read more (PDF).


How Health Care Providers Can Address Palliative, End-of-Life Care
Cameron's Arc, a DVD and workbook, offers an example of how primary care pediatricians and health care teams can support families with a terminally ill child. The project was developed by the American Academy of Pediatrics National Center of Medical Home Initiatives for Children with Special Needs in collaboration with Carepoints. Read more.




Open Enrollment Reminder
Open enrollment for health insurance under Covered California continues through January 31, 2016. However, applications are due by December 15 for coverage to begin on January 1. Learn more.

Also see: The Kaiser Family Foundation provides a Health Insurance Marketplace Calculator in English and Spanish.

A related blog post features health plan enrollment tips for families of children with disabilities.


Behavioral Health Treatment (BHT) Services
Tuesday, December 22
1 p.m. to 2:30 p.m. Pacific Time
The California Department of Health Care Services will update stakeholders on policy and program issues related to behavioral health treament services.

Also see: Are State Policies on Autism Treatment Limiting Access to Care for Children?

And a related December 9 webinar: Navigating the Maze of Medi-Cal for Autism-Related Interventions


Feds Offering Grants to Target Uninsured Children
Government agencies and nonprofit organizations may apply for federal grants to support outreach efforts to populations of children who are likely to be eligible for public insurance but less likely to be enrolled. "Connecting Kids to Coverage" applications are due January 20, 2016. Read more.



Seeking Families for 'Day in the Life' Photography Project
The Lucile Packard Foundation for Children's Health seeks families of children with special health care needs to participate in a documentary photography project that sensitively captures the realities of caring for their children. A photographer will "shadow" families, visiting them in their homes and traveling with them to medical appointments. The Foundation encourages families from throughout the state to participate. Interested families are asked to complete this form.


Let us know what's happening with your organization or family. E-mail Program Associate Danielle DeCosta at with your news or updates. Newsletter Editor: Eileen Walsh