When J.C. Aguirre was born, he couldn’t hear or see for his first six weeks. Knowing that the early weeks were a crucial window to get him help, therapists from a state health program for children with chronic medical conditions worked with him intensively to help him process stimuli. Now, at 13, J.C. can see and hear on his right side, and is so high-functioning that he hopes to become a doctor himself someday.
The state health program, called California Children’s Services, “made a difference for him,” said his mother, Tina May Kline, who lives with J.C. in Atwater, near Merced.
“He does so well because of all the help from the therapy unit,” she said. “He could have been dead if he didn’t have all that help.”
California advocates and legislators are now fighting to make sure J.C. and 30,000 other medically fragile children like him can keep the health services that have, in many cases, helped them survive. The state agency that runs the children’s services program has been moving to change it for the past two years. Initial proposals called for moving the children into Medi-Cal, the state’s low-income insurance program, and forcing them to change doctors after the first year.
Now, a state bill proposes a compromise: children will be moved to managed care, but those who want to keep their doctors after the first year may be able to through an appeals process.
“We have a very vulnerable population of children that needs services,” the bill’s author, Sen. Ed Hernandez of West Covina, said at a state hearing on June 28.
“We need to make sure that there’s a continuity of care and that care continues on,” he said.
Advocates, state agency work on compromise
The Assembly Committee on Health voted 18-0 that day to approve SB 586, which then went to the Assembly Appropriations Committee. It will now move to the full Assembly for a vote, likely sometime next week, before going to Gov. Jerry Brown.
Advocates and legislators spent the first half of July fine-tuning the bill with the Department of Health Care Services, the agency that oversees CCS and Medi-Cal.
The bill appears to have broad support in the Legislature. At the June hearing, Assemblyman Jim Wood, the chair of the Committee on Health, asked to be added as a coauthor of the bill.
“These are critical services they (the CCS children) need to not only stay alive but to maintain a high quality of life,” the Healdsburg Democrat said.
Changing doctors can be life-threatening
Having the same doctor can prevent deadly mistakes, as well as save the families of fragile children huge amounts of time and reduce their stress.
“Seeing the same providers is essential because my birth defects are not going away,” J.C. told the committee at the hearing.
Children with CCS coverage have a range of chronic conditions, including cystic fibrosis, hemophilia, cerebral palsy, heart disease and cancer. Many of them have seen the same specialists for years, who are well versed in the intricacies of their conditions and medications.
J.C., for example, was born with Oculo-Auriculo-Vertibral Spectrum, a rare genetic disorder that has caused him to be blind and deaf on his left side. He has malformed vertebrae in his neck and had 18 surgeries before he was 9.
“Even a small accident, like whiplash, could fracture those bones and, if he has numbness or tingling, if we can’t get into see a neurologist pretty quickly, he could die pretty quickly,” Kline said.
Kline and some other CCS parents wish their children could stay in the program without it changing, but since that doesn’t appear to be an option, they’re backing the compromise bill.
“Even if some protections pass, it is better than nothing,” Kline said.
Agency hopes the change will result in streamlined care
The new proposal calls for moving about 30,000 children from CCS to Medi-Cal managed care sometime after July 2017, according to DHCS spokeswoman Carol Sloan. These children live in 21 counties across the state: Del Norte, Humboldt, Lake, Lassen, Marin, Mendocino, Merced, Modoc, Monterey, Napa, Orange, San Luis Obispo, San Mateo, Santa Barbara, Santa Cruz, Shasta, Siskiyou, Solano, Sonoma, Trinity and Yolo counties.
The other 155,000 children in the CCS program could be moved into managed care later, but plans for that aren’t included in the bill.
Because fewer specialists accept Medi-Cal than CCS, children who switched to Medi-Cal would have likely needed to change doctors at some point under the original plan. But under the new proposal, children will be able to keep their doctors for the first 12 months and may be able to appeal to keep them for as long as they have their condition.
“There are some conditions that are just very specialized and very rare, and we believe that these children need to be able to access the doctors they’ve been seeing all along,” said Kelly Hardy, senior managing director of health at Children Now, one of the advocates working on the bill. “Kids and families shouldn’t have to be re-explaining a humongous medical history to a new doctor.”
Under the proposal, children would get to keep the same services and benefits they have with CCS. The bill also asks the health care agency to ensure that the children’s medical records are transferred and that there are enough doctors and specialists to treat new children who enroll.
Sloan declined to comment on the bill, but said the agency wants to transition some CCS children to managed care because it hopes that it will result in better care coordination. Children with CCS typically have certain doctors that they see through CCS to help managed their condition, but they see other physicians through different insurance when they have another health issue to address.
Moving the children out of the CCS program is expected to be cost neutral, Sloan said.
Kline said she’s wary of having J.C.’s health coverage changed to Medi-Cal, but if he’s able to keep the same doctors, that will help greatly.
“They’re fragile children — you can’t just go through the regular motions,” she said.