Posted September 8, 2016

A newsletter to inform advocates for children with special health care needs about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.


Advocates Urge Action as Governor Considers CCS Redesign Bill
Senate Bill 586, the CCS redesign bill, has been passed by the Legislature and now awaits action by Governor Brown, which could come at any time up to the Sept. 30 deadline. Three dozen organizations have sent a letter (PDF) urging the governor to sign the bill, which they say "sets forth a thoughtful, patient-centered framework that preserves the positive aspects of the CCS program while reducing fragmentation of care delivery to better serve children with complex medical needs and their families." The letter outlines a number of safeguards pursued by advocates. Individual supporters can contact the governor by:

Also see:


ABC's Speechless Gives Voice to Kids with Special Needs: Q&A with the Show's Producer
On September 21, ABC will premiere its sitcom, Speechless, about a family with a child who has special needs. The show stars Micah Fowler, a young actor who in real life and in the show has cerebral palsy, and Minnie Driver, who plays the mother of Fowler's character, JJ. Melvin Mar, one of the show's executive producers, offers a behind-the-scenes look at Speechless. Read our Q&A.

Also see: In Hollywood, People with Disabilities Are Almost Nonexistent


Medi-Cal Children's Health Advisory Panel Meeting
Tuesday, September 13
10 a.m. to 3 p.m.
1700 K Street, 1st Floor Conference Room, Sacramento
Dial-in: 888-469-1573; Passcode: 2862614
Topics include dental recommendations and Medi-Cal Behavioral Health Services. See the meeting agenda (PDF) and more information on the Panel's website.


Center Offers Technical Assistance on Care Coordination
The National Center for Medical Home Implementation offers Technical Assistance and Support (scroll down) to individuals interested in implementing care coordination activities. Options include an hour of introductory assistance regarding the Pediatric Care Coordination Curriculum, Care Coordination Measurement Tool, and the Pediatric Integrated Care Survey, and an additional two hours on implementation and evaluation of those tools. Request technical assistance.


Consumers Invited to Weigh In on Developmental Services
California's Department of Developmental Services is seeking comments and suggestions regarding ways it might reduce disparities among services and supports for consumers and their families. The Department is particularly interested in increasing access to services and supports for underserved consumers and families. Provide feedback.


Emergency Information Forms Improve Care for Children with Medical Complexity
Children with medical complexity would fare better in an emergency medical situation if they had an Emergency Information Form on file, according to a simulation study newly published in Pediatrics. Read more.

With Chronic Illness, You Are Your Own Best Friend
As families of children with special health care needs well know, individuals with chronic illnesses spend most of their lives outside the hospital and managing their own health. A new Stanford study explores the increasingly popular concept of disease self-management with a test population of adults with diabetes. Previous studies have shown that patients who participated in self-management programs had fewer emergency room visits and hospitalizations. The Lucile Packard Foundation for Children's Health currently is funding work to understand how practices can support CSHCN and their families in self-management. Read more about the Stanford study and also see Growing up is hard to do—especially when you have a chronic illness, which describes the Foundation-supported work.

Also see: Managing Chronic Illness: How Health Care Providers Can Help Families Help Themselves



National Child Data Available; Special Portal for Autism
The Data Resource Center for Child and Adolescent Health (DRC) is a national resource that provides easy access to children's health data on a variety of important topics, including children with special health care needs. DRC also offers a special topics portal on Autism Spectrum Disorder (ASD) and a chartbook synthesizing extensive ASD data, Experience Matters: A View into the Health and Wellbeing of US Children and Families with ASD (PDF).


Speaking Up for Children: A Conversation About Child Health in the Next Administration
Monday, September 19
11 a.m. to 12:30 p.m. Pacific Time
Sponsored by the American Academy of Pediatrics
Live-streamed panel discussion with medical and children's health experts on how the next president should approach child health policy. The Academy will release a transition plan to guide the president and federal government on how to address children's needs: Blueprint for Children: How the Next President Can Build a Foundation for a Healthy Future.
Read more and tune in to the live webcast on September 19.


Serving Youth with Co-Occurring Developmental and Behavioral Disorders


Inclusion Collaborative State Conference
October 27-28
Santa Clara, CA (or attend virtually)
Hosted by the Inclusion Collaborative, a program of the Santa Clara County Office of Education
Evidenced-based practices for individuals involved in the care and education of children from birth to 12th grade, with and without disabilities, to create or enhance inclusive practices in their respective programs and communities.
Learn more and register. Fee.

Pediatric Complex Care Association Annual Conference
October 26-28
Richmond, VA
Sponsored by the Pediatric Complex Care Association
For providers of care for children with medical complexity that may include physicians; nurse practitioners and nurses; pediatric nursing home administrators; occupational, physical, recreation, and respiratory therapists; social workers; speech pathologists; and special educators.
Read more and register. Fee.



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