So after cold-calling ABA providers and finding a couple who would accept Medi-Cal patients, Ciudac took that information to her Medi-Cal plan. Not good enough.
The insurer, she said, wouldn't accept a provider who wasn't in-network -- even though, within the network, they couldn't offer a provider.
"If we have a provider they won't take, and the [insurance] officials say they don't have a provider, it's like this closed circle," Ciudac said. "We couldn't get anywhere."
Delays and Uncertainty
Ciudac's story has a happy ending. After six months of fighting, dueling letters, emails and phone calls, her Medi-Cal managed care plan agreed to allow an ABA therapy provider Ciudac found to apply to join the network.
At the beginning of June, her six-year-old son began to receive ABA services.
That six-month odyssey to receive covered services is emblematic of the problems faced by many parents of autistic kids in California, children's advocates say.
According to state statistics released in May by the Department of Health Care Services, 1,123 children have received behavioral health treatment services, which included ABA therapy as of May 5. That's just 2 percent of the estimated 76,000 children under age 21 who are enrolled in Medi-Cal and have autism spectrum disorder.
State officials announced autism therapy as a Medi-Cal benefit on Sept. 15, 2014. The coverage is retroactive to July 7, 2014, when federal officials first issued guidance establishing autism therapy as a benefit.
Now, just under a year later, according to state statistics:
- Almost half of California's counties (24 of 58) have provided no behavioral health treatment through Medi-Cal managed care plans.
- 18 counties have fewer than 11 autism cases per county (an exact number can't be released due to privacy issues).
- The remaining 16 counties provide behavioral services to 943 Medi-Cal managed care children, an average of roughly 59 children per county.
Norman Williams, deputy director of public affairs for DHCS, gave California Healthline an updated estimate on June 10.
"Between 1,500 and 2,000 Medi-Cal managed care members are currently receiving BHT (behavioral health treatment) services, and we expect to have updated numbers soon," Williams said in an email message. "This does not include the approximately 9,000 members currently receiving services from regional centers. Medi-Cal managed care responsibility for BHT services for the majority of these members will occur later this year. The number of individuals accessing BHT services seem in line with other states based upon our discussions with them."
Beyond the rates of coverage, there is another issue plaguing implementation of the autism therapy benefit, according to Kristin Jacobson, executive director of Autism Deserves Equal Coverage. She said the state is insisting on conducting a long diagnostic evaluation of children being considered for coverage.
"There's a long waiting list for that," Jacobson said. "Families are waiting six months to get an evaluation. In some cases the wait time is a year."
Waiting half a year or more for ABA therapy can be crippling to an autistic child's development, Jacobson said.
In general, the earlier the intervention of ABA therapy, the better a child develops. Early intervention can shorten the time ABA therapy is needed, and absence of it can mean serious setbacks for children, she said.
ABA Therapy a Difference-Maker
Ciudac said she saw firsthand what lack of therapy meant when her son's ABA therapy stopped in April 2014.
"We saw so much change in his behavior and progress," Ciudac said. "His teachers all said it was now so difficult to teach him, he lost skills, he was more sensitive to noises."
In just the first two weeks after the start of ABA therapy this month, she said, she can see a huge change.
"Now he's much better, he's starting to learn better how to communicate, so he can explain when he needs to go to the bathroom, when he's scared. It's only the beginning, but I see the difference."
Ciudac hopes this therapy could actually have a much greater effect than previous ABA therapy provided by the schools, because it had been limited by school hours and summers off, and now it will be more regular and consistent.
"When his schedule is structured, it's much easier for him," Ciudac said. "This year was very difficult, because we didn't have ABA therapy. We have had some cases of wandering. And he has no sense of danger, so that can be a problem. Now I know he's much safer."
Ironically for Ciudac, her Medi-Cal managed care plan sent her a letter in March informing her that autism therapy treatment is now a Medi-Cal benefit.
That's information she would have preferred to see last year, she said.
"After I found out by myself. After I talked to the insurance. After all the phone calls and letters about it. After I found the provider. After all the times they said no," Ciudac said. "After all this much, they sent me a letter in March."
That's a year her son will never have back, she said.
"We lost about a year in his development," Ciudac said. "Every day is counting."