State Broaches Idea of Eliminating California Children’s Services Carve-Out

A state health official this week said the Department of Health Care Services is starting a stakeholder process to look at alternatives to the California Children’s Services program for children with severe and rare illnesses.

Originally established in 1992, CSC has been renewed half a dozen times by the Legislature, most recently in 2011 with a bill, AB 301 by Richard Pan, D-Sacramento. Pan’s bill extended the sunset date of the CCS program to the start of 2016.

At a hearing Monday of the Assembly subcommittee on Health and Human Services, DHCS Director Toby Douglas said his department is starting a stakeholder process to examine the possibility of reinventing or replacing the $1.9 billion-per-year program when it sunsets.

“At this point, we’re committed with the CCS program, to make sure it continues to provide high-quality services to a very vulnerable population,” Douglas said. “Like we’ve looked at with many other populations, we’re committed to providing organized care, care that is patient-centered, that better aligns the payment incentives. We want to embark on a stakeholder process to discuss approaches for what is the best system of care for CCS.”

Douglas emphasized that state officials had not yet made up their minds.

“There have been no decisions at this point,” Douglas said. “We will be working with stakeholders over the coming months to look at what it means. Do we end the carve-out? Do we look at other approaches?”

Eileen Crumb, a parent of a CCS beneficiary, said she was wary of making changes to a system that’s working.

“Yes, every system needs improvement, but if we’re going to replace CCS, we need to replace it with something that is specific to the needs of these children,” Crumb said. “Because … if they get the wrong kind of care, it becomes more expensive. The right care at the right time is what CCS is about. Their needs are complex. They need to have people with the expertise to help them.”

If improvement of care is the goal, the department should run some pilot programs to test care delivery, said Tim Shannon, a legislative advocate for the Children’s Specialty Care Coalition.

“Over the years [the carve-out] has been renewed six times, and we’ve had lots of discussion with the department along the way about the extensions,” Shannon said. “In the last go-round with Assembly member Pan’s bill, it was enacted with the notion that there would be pilot projects, to test care for those in the CCS system.”

Those pilot projects have not materialized, Shannon said.

“While we share the department’s interest in organized systems of care, we have a cautionary note,” Shannon said. “We don’t want to rush into this.”

Anne Kuhns, president and CEO of the California Children’s Hospital Association, echoed that sentiment.

“The primary priority … is to first do no harm,” Kuhns said. “I don’t think we should be driven by an artificial deadline. … Any decision, any change needs to be made based on data, not just on a theory that putting children in a different system of care means that they’re being put in a better system of care.”

Douglas said he was open to other ideas.

“We definitely believe as a department that organized care — care that is patient centered — can bring together disparate systems,” Douglas said. “There are better ways to provide high-quality care and we need to work with our stakeholders to look at CCS, and what does that mean for CCS.”

The chair of the subcommittee, Assembly member Shirley Weber (D-San Diego), said she wants the subcommittee to revisit this subject in a future hearing.

Weber suggested “a discussion of why we haven’t done the pilot projects. I think it would be important to have the data, the information … and [to know] what pilot projects we plan to put in place before 2016.”

She said that would help people trust the continuity of care would continue at a high level.

“These are children with some very critical needs,” Weber said. “They’re not easily transitioned. … The consequences are much more grave.”

The CCS program provides diagnostic and treatment services to children under age 21 with a wide range of medical problems including cystic fibrosis, hemophilia, cerebral palsy, heart disease and cancer. Kids who have suffered traumatic injuries are also treated in the program.

Related Topics

Capitol Desk