Daniel Harris, age 4, is just one of 600,000. But he's an important one, and not only to his mom. Daniel is one of the first kids in California to have lost insurance coverage for certain health care services as a result of the state's transition from Healthy Families to Medi-Cal managed care.
Daniel has autism, for which he had been getting treatment through the Healthy Families program. His mom, Rachel Harris, said he was showing marked improvement in the applied behavioral analysis program.
"We were on a really good path with him," Rachel Harris said, "and we were starting to see improvements. It sounds like a small thing, but he could sit down long enough to play a board game. That's big for us."
"I don't know what we'd do without it," Rachel Harris said.
Under the first phase of the transition, 600,000 Healthy Families children were moved into Medi-Cal managed care plans. In the next transition phase, set to begin May 1, the remaining 260,000 children will be moved into managed care plans by the end of the year, according to the state's timeline.
Healthy Families is California's Children's Health Insurance Program, and Medi-Cal is its Medicaid program.
Of the first set of beneficiaries who have transitioned, 207 families will not be able to receive autism services known as applied behavioral analysis -- or ABA therapy -- through Medi-Cal managed care plans.
Families transitioning from Healthy Families to Medi-Cal managed care could still qualify for ABA coverage, but not through managed care plans. California has contracted with private not-for-profit companies to operate 21 regional centers to provide or coordinate services for Medicaid beneficiaries with developmental disabilities, including autism.
However, regional centers have different eligibility criteria than Healthy Families. About three out of four kids getting ABA therapy in Healthy Families would likely not qualify at regional centers, according to autism advocates.
The loss of coverage for ABA therapy is the first indication that services have changed because of the transition. Some state officials and children's advocates are concerned about coverage for other services, particularly mental health services and dental care.
There is also concern that the Department of Health Care Services may be looking at an inaccurate picture of the transition because of incomplete feedback from beneficiaries.
Autism Treatment Just Getting Started
In 2011, California passed a law requiring that private health plans cover ABA therapy, effective July 2012. In September 2012, the Department of Managed Health Care issued an emergency regulation ordering Healthy Families to also cover the service.
An estimated 10,000 kids in Healthy Families have autism, but only about 400 had started receiving ABA therapy by Jan. 1, 2013, the day the state began to dismantle Healthy Families.
Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, a not-for-profit advocacy group, said, "There's another 9,600 children, roughly, who were in Healthy Families and may have qualified for ABA treatment who aren't getting it now at all."
ABA therapy is intensive and costly, $20,000 to $50,000 a year, according to Jacobson. She said the therapy is "cost-effective in the long run, but the short-term cost is what DHCS is looking at here."
If the state extended the ABA benefit to all 10,000 Healthy Families children who might qualify for it, that would be an additional cost of up to $500 million a year.
"That's a big incentive, short-term, for the state to deny services," Jacobson said.
According to Toby Douglas, director of DHCS, it's not about denying autism services, it's about what is allowable to ask Medi-Cal managed care plans to cover.
"Under Medi-Cal, autism is a carved-out benefit. It's not part of Medi-Cal managed care," Douglas said.
Dental Concerns Center on Lower Reimbursement Rates
Access to dental care is a different kind of looming problem, said Kelly Hardy, director of health policy for Children Now, an advocacy organization. The issue, she said, is that coverage under Medi-Cal managed care has a lower provider reimbursement rate than the Healthy Families program did.
"Healthy Families dental providers aren't willing to make the switch over because it doesn't pay well," Hardy said. "There's very little incentive for them when there isn't enough payment to keep the lights on."
According to Hardy, the Medi-Cal rate is about 40% of dentists' usual and customary rate. "Healthy Families paid a little better, between 50% and 60% of the usual rate. Also, Healthy Families is better for them in terms of the paperwork, and it's easier to deal with."
DHCS officials have determined there will be enough dentists to handle the demand.
"Our assessments indicate that network adequacy for all dental plans is sufficient," said Norman Williams, deputy director of communications for DHCS. "We expect that our dental managed care plans will continue to improve and meet expectations for providing quality dental care to Medi-Cal members."
DHCS' prediction of an adequate network may be off, according to Hellan Roth Dowden, project manager for Teachers for Healthy Kids, because many of the providers who accept Medi-Cal patients only see them on a part-time basis. She said more surveys need to be done to properly evaluate whether children are actually getting care.
"There's little evidence-based data on what's happening with these kids," Dowden said. "We still have many concerns about how this is going."
Number of Kids Getting Mental Health Treatment Questioned
At a board meeting last week of the Managed Risk Medical Insurance Board, which oversees the Healthy Families program and has been involved in its transition to DHCS, concerns were raised about some of the numbers around the transition.
"The numbers that the department calls out appear to be quite understated," said Janette Casillas, MRMIB's executive director.
For instance, she said the number of children getting mental health care seems lower than the Healthy Families numbers.
"Most mental health services go through our health plans," Casillas said. "Only those children who have or are suspected to have SED diagnoses -- that is, seriously emotionally disturbed diagnoses -- those children are served at the county health departments. But the majority of mental health-type services are provided in our health plan. And the number of children they've noted, 418, is actually quite low."
MRMIB board member Richard Figueroa asked Casillas to clarify: "Are you saying the amount of prior authorizations [in Healthy Families] don't match on the approval side, the Medi-Cal side?"
"Yes," Casillas said. "There are certainly many more in our [mental health] program than 418 children."
In a written response, DHCS spokesperson Williams said:
"It is important to note that the reported numbers of unique children served do not represent the actual number served and do not represent mental health services provided through Medi-Cal managed care plans. The numbers as currently reported are under-representative because there is a time lag between the time a mental health plan service is rendered and when the claim is submitted to Medi-Cal. Mental health plans have 12 months from the month of service to submit a claim, although most mental health plans submit claims before the 12-month limit. Until claims submission is complete or nearly complete for a given month, any data reported will under-represent the number of beneficiaries served by mental health plans."
Casillas also said the extremely low number of complaints being logged over the transition doesn't seem to add up. In the normal course of business at Healthy Families, she said, there are concerns and complaints from beneficiaries, and that level of grievance would likely rise with a complicated transition.
Getting complaint and grievance feedback is important, Casillas said, so the department can know just where to direct its attention. "We may not be using every data source that's available," Casillas said. "It's important to understand where we need to allocate our resources."
One possible data source, Casillas said, is the health plans. Because much of the written material sent to beneficiaries includes the suggestion to contact health plans with any questions, it's likely that many complaints or service issues would show up at the plan level. Casillas said phone volume data from health plans are missing from the state's reports.
Continuity of Care Concerns Advocates, Parents
Overall, the Healthy Families transition has gone relatively smoothly, given the large number of children being moved to Medi-Cal managed care, Jacobson said.
"While they're saying that 0.1% of Healthy Families' [beneficiaries] have had difficulty with this transition, I would say 100% of people with autism have had difficulty with this transition," Jacobson said. "We can't lose this entire population to some kind of rounding error."
For Rachel Harris, the question is not over policy or politics, it's over how she's going to get her son access to a therapy that has shown promise.
"Since those services were cut off [on April 1], we've seen a regression already," she said. "There's an increased level of aggression. He bit his younger brother. He jetted out into a parking lot."
Rachel Harris said it's difficult being a parent of a kid with autism "because you come to the humbling realization that you can't give them everything they need," she said. "I need help. I need to figure out what will help Daniel, we need to learn this treatment and implement it at home. I'm hopeful we will get these services reinstated, in some way. It's going to be devastating to us, and to other families, to not have this therapy."