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Network News

Many Network Members attended the Family Voices Summit in Sacramento on February 25 and 26, where they learned about the latest budget and policy news affecting children with special health care needs, and met with lawmakers to voice their concerns. Among the top issues: ensuring that the needs of chronically ill children are met by the new health care exchanges created under the Affordable Care Act, and monitoring the landmark transition of hundreds of thousands of children from the popular Healthy Families program into Medi-Cal managed care.

At the summit, Dr. David Alexander, CEO of the Lucile Packard Foundation for Children’s Health, urged families to make their voices heard: "There's no more powerful voice for children with special health care needs than these kids and their families. And there's no better time than now." Make your own voice heard by checking out our advocacy resources.

California Health Policy
Healthy Families Transition Update
California health officials continue to transfer children from Healthy Families insurance into Medi-Cal. As part of this transition, the state is publishing monthly monitoring reports, based on administrative data, about how children are faring. In January, of about 178,000 children who transitioned into Medi-Cal, less than 1 percent needed to change health plans and about 1 percent needed to change primary care providers, according to the state's report. Parents at the Family Voices summit said some behavioral health services are not being covered for children moved into Medi-Cal managed care programs. Other families noted that experimental treatments currently helping their children are not being covered in the transition. We are continuing to monitor this transition's impact on children with special health care needs. If you are experiencing challenges with the transition, please share your story with Network Manager Janis Connallon at

National Health Policy
The Fiscal Cliff: Sequestration and Children's Health:
Everyone's talking about sequestration – across-the-board federal spending cuts set to take effect tomorrow if Congress can't reach a budget deal. How might children with special health care needs be affected? Many chronically ill children are covered by Medicaid (Medi-Cal in California), which specifically is exempted from sequestration. However, child health advocates are concerned about future efforts to limit entitlement spending related to Medicaid and the Early Periodic Screening, Diagnosis and Treatment (EPSDT) program. The EPSDT program is particularly important to children with special health care needs because it offers children in Medicaid access to medically necessary services. Child health organizations are closely monitoring budget negotiations on this front and we'll keep you posted on developments. The Coalition for Health Funding offers a comprehensive overview of how sequestration will affect health and human services programs, including those affecting children. The Association of Maternal & Child Health Programs also prepared an analysis of how sequestration would affect the Title V Maternal and Child Health Services Block Grant and other maternal and child health programs.

EPSDT: Missing From the Essential Health Benefits Final Rule
The National Children’s Hospital Association issued a statement expressing disappointment with the Department of Health and Human Service’s Final Rule on essential health benefits offered in the exchanges under the Affordable Care Act (ACA). The Rule does not include EPSDT-required services as the standard for children covered in the health insurance exchanges offered by states. The Rule also omitted provisions for habilitation services for children. Many child health advocacy organizations, including the Lucile Packard Foundation for Children’s Health, last year submitted comments on the Department’s Proposed Rule,  requesting these provisions for children. The Final Rule does not preclude states from using EPSDT as the essential benefits package, but it does not require states to use it.

In the News — Children with Special Health Care Needs
Parents and Families Push for New Ways to Research Rare Diseases
Wall Street Journal, 2/18/13

Traveling Vehicles Dispense Free Treatment and Education to Asthmatic Children
San Jose Mercury News, 2/18/13

DNA Test for Rare Disorders Becomes More Routine
New York Times, 2/18/13

Kids’ Share 2012: Report On Federal Expenditures On Children Through 2011, Urban Institute

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.