Scarlett Wecks was born with a brain tumor the size of a fist. After she underwent surgery to remove the tumor and endured multiple rounds of chemotherapy during the first two years of her life, the toddler, now three-and-a-half years old, has shown no signs of tumor regrowth. "She's doing really well," said Chris Wecks, her thirty-year-old father, of Newark. At nine months old, Scarlett, who also has cerebral palsy and is hearing impaired, could barely move on her own, he said. But last year, thanks to regular therapy sessions in Fremont, she walked for the first time with a pediatric medical walker. "She was quite nearly running ... and was totally in love with it," he said.
Scarlett receives expert occupational and physical therapy through California Children's Services (CCS), a state program that serves children with serious medical conditions. The program is part of the California Department of Health Care Services, and in its current form, is set to expire on January 1, 2016. Bay Area hospital and health care officials have begun organizing a joint effort in recent months to advocate for the preservation of CCS services. While state officials have said they are planning a substantial overhaul of CCS, defenders of the program believe it is clearly on track to be dismantled — with potentially fatal consequences.
Without CCS therapy for his daughter, Wecks said that he "would have to turn into the therapist," and noted that he cares for Scarlett full-time and that he and his wife, who is a teacher, likely could not afford equivalent private services. "Her future would be much more uncertain."
CCS, the oldest public health program in the state, offers a wide range of services for more than 150,000 youth from birth to 21 years of age, including medical case management through a network of "special care centers" and medical therapy sessions at school-based clinics. CCS services are available to children with conditions that are life-threatening, chronic, and/or potentially disabling. To access most of the program's services, families must also be financially eligible: They must qualify for Medi-Cal or have an adjusted gross income of less than $40,000. Families also become eligible if the anticipated cost of care is more than 20 percent of their adjusted gross income. However, there are no financial eligibility requirements for CCS's therapy services. Instead, they are based solely on the patient's medical condition.
Currently, CCS operates under a traditional "fee-for-service" payment structure, in which the state pays health care providers separately for each service. But over the last two decades, California and states across the country have increasingly moved toward a managed care delivery system, in which families receive services through an organization under contract with the state. And the state intends to convert CCS to such a managed care system.
Health care providers, however, are concerned that families would not receive the same quality of care if these children with rare and complex conditions — and very expensive medical costs — are pushed into managed care. That's why since 1994, lawmakers have repeatedly exempted CCS from managed care, including most recently with a 2011 bill that extended the program until 2016.
This time, however, it appears likely that there will be no further extensions, and if this vulnerable population is put in managed care, CCS would be effectively dead. "The very robust access that children currently have to the best clinician or team of clinicians in the state is no longer going to be guaranteed," said Louis Girling, medical director for Alameda County's California Children's Services. "I do think that as a result of that it is likely that some children will suffer poor clinical outcomes and some may die."
In December, representatives from the California Children's Hospital Association, Children's Hospital Oakland, Lucile Packard Children's Hospital, several of the local managed care plans, and other Bay Area stakeholders met for the first "CCS Collaboration meeting" to discuss the fate of the program and alternative reforms to managed care. "We've never said that the program shouldn't be changed and improved," Girling said. "We just don't think the program should be discarded and replaced with a system that has not demonstrated the ability to produce good clinical outcomes for this population of children with very serious medical problems."
CCS currently serves more than 5,700 children in Alameda County, where there are 47 different types of CCS-certified special care centers that offer medical treatments for conditions like sickle cell disease, kidney failure that requires dialysis, leukemia that requires bone marrow transplants, and more. In Alameda County, CCS also provides therapy services for nearly nine hundred children with physically disabling conditions.
If the state goes ahead with its proposal, managed care plans would have to assume the cost of the benefits that CCS oversees and would be responsible for the management and oversight of pediatric subspecialty services, said Alex Briscoe, director of Alameda County Health Care Services Agency. The problem, he said, is that managed care organizations do not have the capacity or experience to provide the case management and support services that CCS families currently receive. And that means children with complex conditions could end up with primary care providers and specialists who aren't qualified to treat them and that families could lose access to CCS nurse case managers who help coordinate their services, he said.
"This is deeply disturbing to us on a number of levels," Briscoe said. "What the state is doing is pursuing savings at the cost of one of the greatest achievements of health equity in the California public health system."
Bert Lubin, president and CEO of Children's Hospital Oakland, said that officials from the California Department of Health Care Services have made it clear to him that CCS will not be preserved: "The state has decided to eliminate CCS ... because they feel it's not an efficient use of dollars for health care. They are convinced this is in the best interest of the state and that the health care can be provided to these kids without the [CCS] infrastructure."
But the current system, Lubin said, gives kids a chance to thrive. "They have an opportunity to live a lifespan much longer than they ever did before. So it's not just living — it's living with some quality."
While CCS serves a relatively small population, supporters argue that the impact of the program is wider than it appears because it elevates the standard of care across the facilities that are designated "CCS-approved" and through the physicians recognized as being "CCS-paneled." "Because we set the standards in the hospitals, all children who go to those hospitals receive the same level of care," said Katie Schlageter, CCS administrator for Alameda County. "So they're not just providing the care to CCS kids, but to all kids."
Norman Williams, a spokesperson for the California Department of Health Care Services (DHCS), said in a statement that once the current CCS program expires, the state would have the authority to incorporate CCS services into managed care contracts and would pursue this reform through a "transparent stakeholder process ... subject to Legislative, budgetary, and programmatic oversight." Such a scenario would require managed care entities to follow standards of care established by the existing program, including using CCS-approved special care centers and following CCS-approved treatment plans, he said. In an interview, Williams argued that managed care is a "very support-intensive system" that offers better coordination than fee-for-service systems.
Regarding CCS therapy services, like the care the Wecks family receives, Tony Cava, another state spokesperson, said if CCS services are included in managed care contracts, existing therapy programs could remain intact. But Alameda County's Girling argued that these services would be threatened through a dismantling of CCS infrastructure. The state also has given no indication of how it could preserve therapy programs through managed care.
CCS is certainly expensive — the total estimated cost for diagnosis and treatment services for fiscal year 2014-15 is nearly $1.9 billion — but there are disagreements about the most efficient ways to treat children with chronic health conditions.
"We believe it's going to cost the state more money," Lubin said of the managed care model, arguing that when children don't get comprehensive and preventative treatment, they end up increasingly relying on acute and emergency care.
As evidence, Marsha Treadwell, project director of the Northern California Network of Care for Sickle Cell Disease at Children's Hospital Oakland, pointed to a recent study showing that, across the country, emergency room visits and mortality rates increase dramatically for people with sickle cell disease from childhood to adulthood — a trend not tied to the progression of the disease; but, rather, due to the fact that they are no longer receiving specialized care. "We do believe that deaths that were preventable will occur," she said.
Another point of contention surrounds a series of pilot initiatives that the state was supposed to pursue prior to 2016, as stipulated in the most recent legislation extending the CCS program. The pilot projects in five different counties were intended to evaluate various health-care models for CCS-eligible children. But only one has been implemented.
Williams acknowledged that four of the five locations have "encountered significant challenges," adding that, given the "slow pace in moving forward with these pilots, the DHCS is now rethinking how best to pursue reform of the CCS program." He emphasized that CCS representatives, providers, clients, and other partners will have an opportunity to provide input in the upcoming stakeholder process.
Citing the lack of pilot programs, defenders of CCS are advocating for an extension of it past 2016 so that meaningful evaluations can take place. Sherri Sager, chief government relations officer for Lucile Packard Children's Hospital, part of Stanford Medicine, said she supports an extension of the program, but acknowledged that would be unlikely. The state, she said, "wants to be out of the insurance business. They see this as sort of a last program that they are responsible for."
But, she continued, "I worry that these kids who are vulnerable are going to get lost."