Posted August 18, 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.

Editor's note: The next scheduled Network Newsletter will be published September 8. If any major developments take place we will send an email notice. 


CCS Redesign Bill Moves Forward
Senate Bill 586, which addresses the future of the California Children's Services program, was approved by the Assembly Appropriations Committee on August 11 and now is before the Assembly for a vote. The current version of the bill contains many, but not all, of the provisions sought by advocacy groups. See a list of key provisions (PDF) from Family Voices. Negotiations continue, and additional revisions may be forthcoming. If the Assembly passes, the bill returns to the Senate. Monitor the status of the bill.

Also see: California's Most Fragile Children Will Get to Keep Doctors Under New Bill

Public May Comment on CCS Advisory Group Meeting Agenda
The CCS Advisory Group will discuss potential agenda topics for the group's October 5 meeting in an informal phone call on August 22. The group advises the Department of Health Care Services on the CCS redesign plan. The call is open, and members of the public may offer ideas at the end of the call. Read more about the Advisory Group.

Monday, August 22
11:30 a.m. to 12:30 p.m. Pacific Time
Call-in number: 866-704-1470; Passcode: 3856049


South Asian Center for Kids with Special Needs Facing Eviction
After 13 years at its headquarters in Milpitas, the Bay Area's only organization serving South Asian American families of children with special needs is facing eviction. Read about Jeena's history and programs.


State to Seek Waiver Renewal So Children May Receive Concurrent Palliative, Curative Care
California law currently allows children with life-threatening or life-limiting illnesses to receive palliative care services while also pursuing curative treatment. This dual option, which was implemented only after years of work by advocates, requires a waiver of federal regulations, which now must be renewed. The Department of Health Care Services is beginning the waiver renewal process with a meeting (PDF) on August 31. The meeting will provide an overview of the renewal process and seek input from stakeholders. For information, including the call-in number and webinar agenda, see the website.
Register for the webinar.

Also See: Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children With Life-Threatening Conditions

Public Hearings to Consider Disparities in Purchasing of Services by Regional Centers
The Department of Developmental Services has scheduled public meetings for August 25 and August 26 to review Regrional Center purchase-of-service data with stakeholders in Southern California. Discussion topics will include cultural barriers in obtaining Regional Center services, areas of the developmental disabilities service system that need clarification for stakeholders, and recommendations to promote equity in the purchase of services. Read more and find meeting dates and locations.


Studies Address Social Complexity Risk Factors, Barriers to Care Coordination, Medical Homes
Abstracts are available for two studies published in Pediatrics that address key issues in care coordination.

Also see recorded webinar: Research and Practice Perspectives—Coordinating Care for Children with Social Complexity


Opinion: Fixing Medicaid for Kids with Complex Medical Conditions
In this opinion piece, Missouri Congressman Billy Long discusses his co-sponsorship and support for the Advancing Care for Exceptional Kids (ACE Kids) Act, which is pending in Congress. He notes that the bill is designed to address the issue that families of children with complex conditions are limited in the treatments Medicaid will cover for their children based on where they live.


Preparing Adolescents with Asthma and Allergies for Transitions to Independent Living
Thursday, September 1
10 to 11 a.m. Pacific Time
Sponsored by the American Academy of Pediatrics
Designed to educate practitioners on issues pertaining to adolescent transitions from the medical home, with practical tips to start using immediately.

Neurologists Endorse Role in Supporting Transitions to Adult Health Care
The Child Neurology Foundation has issued a consensus statement indicating that neurologists should take a leadership role in planning young patients' transitions to adult care, and in helping establish care coordination among health care, educational, vocational, and community service providers. The statement outlines eight principles that neurologists should consider. Read more.


Medical Studies Involving Children Often Go Unpublished
A new study highlights scientific and ethical issues raised by the finding that the results of many medical studies focused on children are never published. A review of clinical trials started during 2008-10 found that 19 percent of the studies that recruited children did not run to completion, and of the 455 trials that were completed, the results from 30 percent weren't published for a variety of reasons. Read more about the results.

How Home Visits Support Oral Health in Children
A new issue brief from The Children's Partnership highlights the benefits of home visiting programs in improving oral health for children, but notes that these programs are not widely recognized or supported. "Healthy Mouth, Healthy Start: Improving Oral Health for Young Children and Families Through Early Childhood Home Visiting" provides recommendations on how to improve oral health in home visiting programs, some of which serve children with special health care needs.

Also see: School Dental Clinics Good for Kids, Taxpayers


Independent Living Centers for People with Disabilities
Thursday, August 25
10 to 11 a.m. Pacific Time
Sponsored by the USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
Discussion will include definition of Independent Living Centers and the meaning of independent living for individuals with disabilities. Read more (PDF) and register.

The Use of Social Media to Enhance Communication and Dissemination
Wednesday, August 31
11 a.m. to 12:30 p.m. Pacific Time
Sponsored by the Association of University Centers on Disabilities
Featuring a panel from the Association of University Centers on Disabilities and Developmental Disabilities Network Partners. Read more and register.


Rate-Setting Strategies to Advance Medicaid Managed Long-Term Services and Supports Goals: State Insights – Center for Health Care Strategies, Inc.

Looking Outside Hospital Walls: Care Coordination for Children with Medical Complexity – Children's Hospital Association (scroll to bottom)

A Closer Look at the New ABLE Programs – ABLE National Resource Center


Two Television Shows Depict Family Life for Young People with Special Needs
A reality show and a situation comedy present how children with special health care needs and their families approach daily life. The Emmy-nominated "Born this Way" follows seven young adults with Down Syndrome as they tackle adult life, while "Speechless" portrays a family of a nonverbal child with special needs, who is played by an actor with cerebral palsy.

Other useful resources:



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