The California Children’s Services program is small but successful, helping 180,000 medically fragile children and young people obtain specialized care for the treatment of severe or chronic illnesses such as cerebral palsy, hemophilia, sickle cell anemia and cancer.
Serving about 30,000 families in the Central Valley, the program links them to physicians, therapists and clinics. It also indirectly helps people and families outside the program by encouraging the creation of centers of excellence that support anyone needing similar specialized care.
Nevertheless, its success is at risk unless Gov. Jerry Brown signs Assembly Bill 187, now on his desk. This measure unanimously passed the Legislature and would preserve, at least for now, the program’s independence and unique nature.
Without AB 187, the program will be merged into the state’s Medi-Cal program, and the clients could be lost among the 12 million in Medi-Cal. This would be the ninth time in 20 years that the Legislature has created a “carve-out” for the program.
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Why is this important? Ginger MacGowan, a Northern California mother, has a daughter who is 8 years old, suffers from a very rare syndrome and is being treated at UC Davis Medical Center by specialists in genetics, neurology, audiology, cardiology, orthopedics, ophthalmology and five other specialties.
“I contact our nurse case managers very often with questions, concerns and to just get support,” she told the California Health Report. “They understand my child’s condition and needs, and will figure out the best way for her to receive what is needed in a timely manner for her health and safety.” In Medi-Cal, she said, “finding doctors who understand and can put all her problems together is almost impossible.”
The CCS program is currently administered by the California Department of Health Care Services, which has proposed merging it into Medi-Cal managed care. While any government program can be improved, no credible case has been made that the proposed changes will benefit taxpayers or families in the program. In a 2014 survey, 85 percent of parents of CCS patients were satisfied or very satisfied with the quality of care they received and almost 90 percent were satisfied with the case manager helping to coordinate care.
Equally concerning is the fact that the department’s plan seems untested and hastily put together. Four out of five pilot projects authorized by the Legislature were never carried out, and the one that was conducted among 1,400 families in San Mateo County was never evaluated.
Virtually every stakeholder group representing families or providers – including the March of Dimes, the Sickle Cell Disease Foundation, the Chronic Care Coalition and dozens more – supports AB 187. For children and for families, we urge Gov. Brown to sign it.
Ann-Louise Kuhns is CEO of the California Children’s Hospital Association.