Danielle Quintero has been through the bureaucratic mill so her wariness and trepidation are understandable. Her 3-year-old son Abraham has autism. Quintero is insured through Medi-Cal and getting autism treatment in her town of Oakley, a suburban area between Oakland and Stockton, has been challenging.
“When we had a medical plan for a while, they said they don’t cover it, it’s a schools benefit. The schools say talk to Medi-Cal. Medi-Cal, they say talk to your medical plan,” Quintero said. “It wears you out. They put up these blockades, and parents would lose enthusiasm for it.”
Between a period of time with private coverage and a short stint in the state’s Healthy Families program, Quintero eventually managed to wrangle 10 hours a week of applied behavior analysis — known as ABA therapy — through one of the state’s 21 regional centers.
However, things may change for the better for Quintero and her son. State officials last week said Medi-Cal — California’s version of the federal Medicaid program — now will cover ABA therapy. Those 10 hard-fought hours of therapy might turn into the 40 hours of ABA care medical providers say her son actually needs. And Medi-Cal would pay for it. No copayments. No coinsurance. Just coverage.
Quintero was silent a moment as that information sank in.
“Well, that’s great,” she said. “That would be awesome. I would flip my lid if that’s the case.”
It looks like that’s the case.
Officials at the Department of Health Care Services, after announcing plans to cover autism therapy as a Medi-Cal benefit, said they expect to submit a state plan amendment to CMS by Sept. 30 to implement the new policy, which likely would be in place by the start of 2015.
Coverage of autism therapy will be retroactive to July 1, 2014, state officials said.
That floored Quintero, who spends a significant amount of her income on her son’s medical care and insurance.
“What does that mean?” she said. “It means I wouldn’t have to work 60 hours a week. It means I can sleep more than four hours a night. It means more waking hours with my son, it means a better opportunity for Abraham.”
She said full ABA therapy would make a huge difference for her son. She said it would help him develop stronger social skills and lead to better grades in school because of the social foundation.
“It means a brighter future for my son,” Quintero said. “It’s nothing but positive. I just want the best for my kid, and my son needs more medically necessary care than other kids do. I’m hopeful. But also I’m in the pool of let’s wait and see. I’ve learned the way of the bureaucratic process.”
Let the Process Begin
The bureaucratic process officially starts with a stakeholder meeting Aug. 29.
Federal guidance that made it clear autism therapy is a covered Medicaid benefit also indicated states don’t necessarily need to file a state plan amendment to offer coverage, according Dan Unumb, executive director of the Legal Resource Center at Autism Speaks, an advocacy group based in New York.
“I don’t think [California health officials] need to submit a state plan amendment. Pursuant to EPSDT (Early and Periodic Screening, Diagnosis and Treatment benefit), a coverable medical need must be delivered whether or not it’s in the state law,” Unumb said.
“If they keep to the timetable, it should not interfere with the implementation of the benefit,” he said. “If they’re ready to go forward with reasonable coverage, and it sounds like they are, then there is no problem with doing an SPA.”
There still are two major details to be decided: setting provider reimbursement rates and establishing a policy on the number of hours to be covered.
According to Kristin Jacobson, president of Autism Deserves Equal Coverage, an advocacy group based in Burlingame, the hours aren’t really negotiable; they are determined by what is medically necessary.
“There shouldn’t be arbitrary limitations. There shouldn’t even be a discussion of arbitrary limits,” Jacobson said. “Appropriate care is going to be critical. In the end, it’s incumbent on Medicaid to have access to care.”
About 14,000 California children diagnosed with autism are getting some kind of behavioral care at the 21 regional centers across the state, according to Jacobson. About 6,000 — or almost half of them — are covered by Medi-Cal and will be eligible for ABA therapy.
In addition, Jacobson estimates another 4,000 to 6,000 children in California will be eligible for other kinds of behavioral health therapy under Medi-Cal.
Some regional center Medi-Cal children receive a limited number of hours of care and, in theory, that care will be expanded, according to Rick Rollens, a legislative adviser to the Association of Regional Center Agencies. Hopefully, he said, children at the regional centers will remain with their providers — with some of them getting expanded ABA therapy. He added that the change for the centers themselves is just in the financial structure of providing that care.
“What will happen is the cost will be shifted from regional centers to Medi-Cal,” Rollens said. This same cost-shift occurred with private plans, when the state required them to cover autism services. “Now the same thing’s going to happen with Medi-Cal payments,” he said.
Provider Rate Determination the Key
The big concern, and likely the main talking point at the upcoming Aug. 29 stakeholder meeting will be provider rates, Rollens said.
He worries that if the state tries to lowball those rates, it will mean that only private-pay families would be able to afford quality care, and that Medi-Cal children might find it difficult to even find a provider, especially in rural areas where there is a dearth of providers.
“If the Medi-Cal rates aren’t competitive, we could be setting up a two-tiered system,” Rollens said. “As we are shifting kids from existing programs in regional centers into the Medi-Cal system, if the rates are too low, I would be afraid those kids might lose their regional center providers.”
Sometimes it can be hard for people to understand how different and specialized ABA therapy is, Rollens said.
“We’re really hoping they look at prevailing rates and not go into their own system,” he said. “ABA therapy is a different type of intervention and service. The rate structure at the regional centers now is about as low as it can go.”
Unumb echoed that worry.
“We are concerned that if rates are too low, children will suffer,” Unumb said. “The danger is not a two-tier system in the sense of a Cadillac versus a Chevy, but a two-tier system where one program works and one doesn’t.”
Cost of Care vs. Cost of Non-Care
California’s likely cost of adding ABA therapy as a Medi-Cal benefit was estimated by state Senate health consultants at about $100 million a year. Half of that would come from federal funding, which would mean a cost of roughly $50 million in California general fund spending.
The estimate could change, depending on reimbursement rates and potential restrictions on hours. According to Jacobson, it costs an average of $17,142 per child per year for full ABA therapy. Simplifying the math and just multiplying that number by the estimated 6,000 children who may qualify for the therapy ends up at roughly the same projection as the Senate consultants concluded through actuarial means: $102 million total, or $51 million in general fund dollars.
The cost of not offering ABA therapy is much higher, according to data from The Children’s Partnership. The not-for-profit children’s advocacy group said the cost to the state in long-term care, lost wages and institutionalization of untreated autistic children would be more than $12 billion over 15 years.
According to Jacobson, state health officials’ decision to cover ABA therapy will save California money in the long run and it will change the lives of many families across the state.
“This is a really big deal for these families,” Jacobson said. “It is truly life-changing for the children and their families, and it will make an enormous impact on these families.”
Jacobson said about 40% of children with ABA therapy can be mainstreamed and lead normal lives, and another 40% show significant gains from the therapy. The contribution to society of those children over their lifetimes is almost immeasurable, she said.
“It will have an enormous impact on society,” she said, “since their life outlook is substantially worse without it. That’s why it has become the standard of care. It’s so important we’re taking this step to take care of our children.”