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Note: Because of the July 4 holiday, the next newsletter will be sent on July 8.

Network News

New Grants
The Lucile Packard Foundation for Children’s Health has just made nearly $500,000 in new grants for programs and research to support improvements in systems of care for children with special health care needs. Among the projects: an analysis of public spending for children’s health care programs in California, and an examination of practices that can help children with special needs and their families better manage their own care. Read more.

Family-Centered Care
Representatives from 15 hospitals and clinics met earlier this month at Lucile Packard Children’s Hospital for the launch of the California Patient and Family-Centered Care Network. The Network, supported by a grant from the Lucile Packard Foundation for Children’s Health, offers opportunities for advocates of patient and family-centered care to share information, resources and approaches. Thirty providers, patients, and parents of children with chronic conditions met to discuss a range of topics, including patient and family advisory councils; patient and parent participation on committees; and staff training. The next meeting is planned for October 2013. For more information about the California Patient and Family-Centered Care Network, please contact Karen Wayman at

Grant Opportunity
Career Development
For graduate students at U.S. universities who are focusing their studies on disability and health, the Disability Section of the American Public Health Association (APHA) is offering up to four $1,000 Career Enhancement Scholarship opportunities for 2013. These scholarships can be used by the awardees as desired, including to defray expenses for attendance at the Disability Section Scientific Program and Business meeting at the 2013 American Public Health Association Annual meeting in Boston from November 2-6, 2013. Questions? Please contact Dot Nary at or 785-864-4095. Learn more about the 2013 Annual Meeting.

California Policy
Transparency Legislation
A June 24 hearing is scheduled for AB 209, a bill sponsored by California State Assemblyman Dr. Richard Pan that would require the Department of Health Care Services to provide better monitoring of, and data about, large-scale transitions of patients into Medi-Cal managed care programs. The bill grew in part out of concerns about the transition of hundreds of thousands of children, including many with special health care needs, from Healthy Families to Medi-Cal managed care programs. The bill also includes provisions for an advisory committee composed of providers, health plans, researchers, advocates and enrollees to make recommendations to the Department of Managed Care to improve quality, access and delivery of Medi-Cal managed care services.

Private Insurance Coverage under California’s Affordable Care Act (Covered California) – Family Voices
July 5, 12-1 p.m.
Register for the webinar

Families of children with special health care needs will soon have the opportunity to purchase health insurance through California’s new Covered California exchange. Five benefit plans are available, but they differ greatly in costs for premiums, copayments and deductibles. To help families make informed decisions, Family Voices California hosts a webinar with Peggy McManus, President of The National Alliance to Advance Adolescent Health. McManus’ recent research on this topic was funded by the Lucile Packard Foundation for Children’s Health. McManus also presented this research at a legislative briefing in Sacramento in April. You can view her remarks here.

National Health Policy
Speak Now for Kids Family Advocacy Day – National Association of Children’s Hospitals
Today (June 20), families and staffers from the nation’s children’s hospitals are on Capitol Hill lobbying Congress on a number of issues including training for pediatric medical residents, Medicaid funding and care coordination. We’ll have an update on their work in our next newsletter. More information>>

Former Foster Children and Health Reform
The Affordable Care Act allows “aged-out” foster youth to remain eligible for Medicaid if they were in foster care and were enrolled in Medicaid when they turned 18. Advocates have hailed this provision as a boon for the estimated 80 percent of foster children who have chronic health conditions. The Georgetown Center on Children and Families’ “Say Ahhh!” blog examines how this provision will be implemented. More information on ACA provisions for former foster youth can be found in this Family Voices paper.

New Budget Makes 'Major Change' to Lanterman Act, Autism Policy
California HealthLine, June 20

Multiple Sclerosis Huge Hurdle for Youths
San Francisco Chronicle, June 19

Latino and Black Kids with Autism Less Likely to Use Specialty Services: Study
HealthDay, June 17

Supreme Court Steers Clear of Special Education Dispute
Disability Scoop, June 12

Medicaid and Children’s Health Insurance Program Payment and Access Commission (MACPAC) Annual Report Released
National Law Review, June 18

Issue Brief: Improving Access to Specialty Care for Medicaid Patients: Policy Issues and Options
Commonwealth Fund, June 6
Also see the UCLA/Lucile Packard Foundation for Children’s Health issue brief on this topic.

Advocacy Opportunity
Kids As Self-Advocacy (KASA) National Task Force
KASA, a project of Family Voices, seeks young people ages 12 to 18 to serve on the Kids As Self Advocates all-youth volunteer Task Force. The national task force will give advice and opinions to the KASA Advisory Board and staff about what information and training youth with disabilities need.
Click here to learn more. 

Keep in Touch
Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at at with your news or updates.