Five Organizations Receive Foundation Funding
A grant to Support for Families for parent advocacy training and a grant to The Children’s Partnership to promote the use of telehealth for children with special health care needs are among the projects recently funded by the Lucile Packard Foundation for Children's Health. Grants totaling $263,643 went to five organizations seeking to improve the system of care for children with special health care needs. Read more. Photo: UC Davis

A Voice for Her Son and for Other Children
Kausha King's work as the parent health liaison at the Care Parent Network in Contra Costa County is deeply personal. Nearly everything she teaches parents about advocating for their children with special health care needs, she has experienced herself. "It's a world all our own, and we came into it blind and had to learn," she says. Read her story.
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TOMORROW: Webinar on Evaluating Rural Expansion of Managed Care
Last November, the California Department of Health Care Service expanded managed care into 20 counties that were previously Medi-Cal fee-for-service. To evaluate the results, the Department is holding a series of stakeholder webinars, with the first scheduled for April 18 at 1 p.m. See the agenda and register for the webinar.

April 25 Forum: Critical Issues in the Developmental Disabilities Services System
Golden Gate Regional Center and the Service Provider Advisory Committee are sponsors of a forum to discuss the developmental disabilities services system. Individuals with disabilities and their families, service providers and community leaders are invited. Assemblymember Kevin Mullin and Eileen Richey, executive director of the Association of Regional Center Agencies, are scheduled to speak. Among the topics are regional center funding, system efficiencies, early start services, and transportation services. April 25 from 10:30 a.m. to 1 p.m. at the South San Francisco Conference Center. Free. Read more.

Legislature Weighing Bill to Require Schools to Provide EpiPens
A bill (SB 1266-Huff) mandating that schools stock epinephrine auto-injectors, or EpiPens, is under consideration by the California Senate. The bill would require school districts to provide the pens to trained personnel who could then provide emergency medical aid to anyone suffering from a severe allergic reaction. Read more.

California Makes It Harder for Insurers to Deny Autism Treatment
Reuters, 4/16/14  


Family-to-Family Health Information Centers Funding Renewed
As part of the Protecting Access to Medicare Act of 2014, which includes many other provisions, $5 million was allocated to renew funding for the Family-to-Family Health Information Centers (See Section 207 of the Act), which assist families and professionals. Read more about the centers.

Funding for Pediatric Residents Reauthorized
President Obama has signed an extension of the Children's Hospitals Graduate Medical Education initiative, which provides funding to freestanding children’s hospitals to cover stipends for residents, faculty salaries, overhead and training costs. The program’s goal is to increase the number of pediatric residents and boost research for vulnerable children. Read more. The Children's Hospitals Association is urging that the full appropriation be made.

New Law Diverts Political Convention Funds to Pediatric Research
The Gabriella Miller Kids First Research Act, which transfers public funds allocated for political conventions to a 10-Year Pediatric Research Initiative Fund, has been signed by President Obama. The law could allocate $12.6 million per year to the National Institutes of Health for research into pediatric diseases and disorders. Read more.


According to parental report, 19.9 percent of California children ages 12-17 had a special health care need in 2011-2012, while 16.5 percent of those ages 6-11 and 8.3 percent of those ages 0-5 had a special need. See the data from the National Survey of Children’s Health on


Autism Spectrum Disorder: From Numbers to Know-How
April 22, 2014
10 a.m. to 11 a.m. PDT
The first-ever Centers for Disease Control Public Health Grand Rounds on autism spectrum disorder, featuring presentations on autism etiology, surveillance, early identification and screening, and evidence-based intervention. Continuing education opportunities available. Register here.

Medical Home Implementation and Innovation at the State Level
April 24, 2014
10 a.m. to 11 a.m. PDT
The National Academy of State Health Policy will present a webinar on the innovative medical home efforts in Vermont and Philadelphia, and their impact on cost and quality outcomes. Register here.

Navigating Insurance Issues – Rare Diseases
April 30, 2014
10 a.m. to 11 a.m. PDT
How health insurance coverage for patients with rare diseases has undergone significant changes in recent years, including changes arising from the Affordable Care Act. Register here.

Title V Five Year Needs Assessment Virtual Training – Part 2: Nuts and Bolts on Using Data
May 1, 2014
3 p.m. to 4 p.m. PDT
Title V legislation requires each state and jurisdiction to conduct a statewide, comprehensive needs assessment every five years. To assist states or jurisdictions in preparing their assessments AMCHP is hosting a series of virtual trainings. See details. (Scroll down)

  • Nuevo: Family Voices Project Impact ha publicado Bright Futures Guía para Familias - Criando bebés, niños y adolescentes saludables, 2a edición, una guía de bolsillo para cada familia, incluyendo aquellas con niños y jóvenes con necesidades médicas especiales. Leer mas. Also available in English. Read more.
  • The April edition of the parent-run Complex Child newsletter focuses on Insurance and Medicaid Benefits.
  • The Maternal and Child Health Navigator, a learning portal for maternal and child health professionals, students, and others working to improve the health and well-being of women, children, and families, has launched a new website.


The Devil Is in the Details: Coordinated Care under Covered California
May 9, 9 a.m. to 3 p.m.
State Building, 1515 Clay Street, Oakland, CA
Free nursing CEUs available.
New Link: See the flyer and registration form.

Healthy Communities Data Summit at UCLA
New Date: June 11, 2014
Los Angeles, CA
This conference will showcase technologies, programs, and data designed to improve patient access, health care quality and consumer engagement. Attendees include policymakers, nonprofit organizations, foundations, public health researchers and health IT developers interested in improving health care. Learn more and register.


The National Council on Disability is accepting applications for a grant of up to $135,000 to assess the impact of the Affordable Care Act on individuals with disabilities. The grantee will examine how the ACA is being implemented and how its provisions might be carried out to maximize the likelihood of positive benefit to people with disabilities. Applications is open to all; proposals due April 29. Read the full posting.

Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at with your news or updates. Newsletter Editor: Eileen Walsh