Looking out for our most vulnerable children

A child’s health and chance to survive a serious medical condition should not be dependent on their family’s income. All children deserve access to high-quality health care services – particularly children who are medically fragile or have serious diseases.

That tenet is at the heart of the California Children’s Services (CCS) program – a model program leading the nation and the world in providing children with access to the best health care services, regardless of their family’s income. Every year, nearly 200,000 children with special health care needs living in low or middle-income families depend on this program for access to specialists. Many of these children are children of color or living in poverty. According to researchers at Stanford University’s Center for Policy, Outcomes and Prevention, 65% of CCS children are Black or Hispanic, and 67% qualify for Medi-Cal.

The future of the CCS program is at risk amidst a state proposal to transition these children to Medi-Cal managed care without key safeguards to ensure their safety. Now, the California Legislature and Governor Brown have the opportunity to protect and strengthen CCS. SB 586, a state bill authored by Senator Ed Hernandez (D-Azusa), would ensure pediatric specialty care for children who are struggling with very serious, often rare, diseases.

The CCS program, in existence since 1927, guarantees health care by the most qualified providers for children who are medically fragile, including those with rare congenital disorders, cancer, type 1 diabetes, cerebral palsy, hemophilia, sickle cell anemia, and cystic fibrosis. One father memorably illustrated the need for CCS when he held up his disabled daughter at a hearing in Sacramento and said, “You know, when you drive a Ferrari, you want the best. You don’t take it to the local mechanic, you take it to a special place, to the very best place, to someone who understands the intricacies and the uniqueness of a Ferrari. My daughter is like a Ferrari.”

Children in CCS receive health care based on the best practice standards for their condition, not on health care costs. Millions of children and families have benefitted from this program over the years; children’s lives have been extended or saved through treatments that in many places and countries are reserved only for the very rich.

Last year, the California Department of Health Care Services (DHSC) released proposed changes to CCS in their “Whole Child Model” plan to move nearly 20% of CCS children to Medi-Cal managed care beginning January 1, 2017. Few precautions were initially offered to help ensure the safety of children during the transition to a new system of care. Currently, the program is managed in every county by pediatric medical directors, who make decisions based on the medical needs of the children. The managed care model, with its focus on cost containment, and CCS seemed to be fundamentally different and virtually incompatible. Yet, some counties in urban areas with extensive access to multiple children’s hospitals had success in combining Medi-Cal managed care and CCS.

Families and advocates were worried because of experience with traditional managed care plans that were rigid and concerned with costs, and offered limited access to providers and specialists. Last year, a state audit found that DHCS had data collection problems that left them unable to ensure that there were enough providers available in Medi-Cal managed care. And, there is limited evaluation data of existing CCS/Medi-Cal managed programs to prove that the Whole Child Model would be effective for CCS children.

As a result of strong advocacy from families and children’s health partners, earlier this year, policymakers stopped DHCS initial effort to authorize this change through the state budget process.

Children’s Defense Fund-California (CDF-CA) is part of a group of CCS advocates including Family Voices of California, California Children’s Hospital Association, American Academy of Pediatrics, California Specialty Care Coalition, March of Dimes, Cystic Fibrosis Foundation, Hemophilia Council of California, and Children Now among many others. Together, we expressed grave concerns about the ability of health plans to guarantee access to providers, continuity of care for those children where changing providers could harm their health, family advisory and review of the program, and unqualified staff making authorization of care decisions.

SB 586 is an attempt by advocates, the Legislature and DHCS to bridge these differences. SB 586 authorizes changes and more involvement from Medi-Cal managed care plans, while still ensuring that the highest standards for pediatric specialty care are retained as the central component of the program. The CCS program will continue under SB 586, with improved evaluation, legislative oversight and monitoring, appeals and grievances processes, and a guaranteed place for families to participate through local and state family advisory boards. SB 586 allows for continuity of care and helps families make the transition with little disruption.

After SB 586 passes and is signed, CDF-CA will continue to work with families and with DHCS to ensure that families are supported, and children receive access to all medically necessary services guaranteed through federal Medicaid law. We look forward to our ongoing collaboration to improve and maintain CCS as a model for other states to provide care for children with medically complex conditions.

Alex Johnson is the Executive Director for the Children’s Defense Fund-California. Follow Johnson on Twitter: www.twitter.com/AMJ_AlexJohnson


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