Feb 6, 2025, Signal Cleveland: Common autism treatment out of reach for many Ohioans because of state inaction, advocates say
. . .Colby’s ABA therapy is a type of psychological treatment that’s the most commonly prescribed intervention for severe autism spectrum disorder. It’s entirely paid for by Medicaid, the healthcare program for the poor and disabled run by the state and federal government. Paying for it out of pocket would cost Colby’s family tens of thousands of dollars.
But few eligible families use Medicaid to get this autism therapy because of historical failures by the Ohio state government to properly administer the program, according to providers who run the business like the one where Colby is enrolled. The result is most ABA providers have decided not to accept Medicaid, leaving limited options for families like Colby’s..
“It’s been the Wild, Wild West in Ohio,” said Mariel Fernandez, a lobbyist for the Council of Autism Service Providers, a trade group.
Advocates estimate there are 1,400 ABA practitioners in the state. But only 350 of them have signed up to accept Medicaid. They estimate there are 30,000 Ohioans 21 years old or younger with autism enrolled in Medicaid. But only 2,417 have billed for ABA – about 8% of the entire eligible population – according to numbers Medicaid department officials released to a Republican state lawmaker last year.
Advocates, however, say they’re encouraged that the state Medicaid department in December for the first time proposed a standardized set of rules, including a set amount ABA providers can get paid for their services. They said finalizing the rules should make the industry more viable and attract additional providers, years after federal officials ordered Medicaid to cover it.
The advocates are still waiting for it to happen.
State Medicaid officials declined to comment for this story. . . .
These programs typically are intensive. Kids like Colby receive treatment in a school-like setting for 25 to 40 hours a week. Research shows that it works best early in childhood, when the brain is more flexible.
Medicaid, meanwhile, is a public health insurance program for the poor and disabled. The state manages the $40.8 billion Medicaid program’s day-to-day administration. The state hires companies that manage the care for nearly all of Ohio’s eligible Medicaid patients. These managed care organizations receive a set amount of Medicaid funding per person who’s enrolled in their plan, giving them a financial incentive to keep costs as low as possible so they can maximize their profits.
Autism therapy can be expensive . . .
ABA treatment can cost anywhere from $20,000 to $60,000 a year, depending on whether it’s provided in a group setting or on an individual basis. Kim Phan, owner of Wolff & Phan, said 70% of her business’ clients are Medicaid recipients. But reimbursement rates haven’t increased since she opened her practice in 2021, and she said it’s harder to pay her bills.
“It’s challenging when you start to look at, now, do we have to be one of those providers in the private practice that just don’t accept Medicaid?” Phan said.
Ohio Medicaid spent $67.5 million providing ABA therapy to 3,317 kids in 2024, according to agency spokesperson Stephanie O’Grady, or an average of $20,300 per patient.
Advocates say the problem in Ohio is that the state isn’t spending enough on ABA. But some states have taken steps recently to restrict ABA in response to ballooning program costs, including in Indiana, where the state has cut the hourly rates paid to providers and is working to impose a lifetime cap on treatments for individuals.
Insurance companies reluctant to cover ABA therapy
Historically, insurance providers were reluctant to cover ABA therapy because of its high cost. But after successful lawsuits from parents that challenged coverage denials and changes in state and federal law, most states now cover it. The basic idea is that healthcare providers now are required to cover pre-existing conditions, and federal law also requires insurance plans to treat coverage for physical illness and mental illness the same way. Medicaid also offers broad guarantees for necessary medical treatments to enrollees 21 and younger, an approach meant to offer early intervention to avoid more expensive burdens on the system later in life.
When adding ABA coverage to Medicaid plans, most states did so administratively, publishing a list of rules when they did it, including a standard rate that providers get paid per hour, according to Fernandez. But Ohio didn’t, she said. Years have passed without any action, leading managed care organizations to each set their own rules.
The lack of regulation here has meant there’s no standard amount that Medicaid plans must reimburse providers. There’s also been no standard process for approving ABA providers, called behavioral analysts, to be able to bill Medicaid. Most providers have opted not to sign up to accept Medicaid as a result.
The result, advocates said, is that Ohio lacks a robust network of Medicaid-eligible providers, leaving lower-income Ohioans with no options, even though they’re guaranteed coverage on paper. . . .
Even if a family gets a child into ABA therapy, providers say they have a hard time getting the companies that run the Medicaid health plans to approve treatment. They say Medicaid data shows that 18% of kids’ claims are at least partially denied, while half require a lengthy approval process called peer-to-peer review, in which providers speak on the phone with a health plan representative to verify their claim is actually eligible for reimbursement.
Jen Gonda, a bluntly spoken provider from the Youngstown area who helps lead a state ABA providers advocacy group, said arguing with insurance providers can lead to payments being delayed for months. She’s found examples of one major managed care company rejecting claims in violation of their own internal policy, learning they’d done so after she managed to obtain a copy.
The lack of standard rules makes it hard to navigate the denials and can leave providers in an endless loop of asking questions of state regulators and managed-care organization representatives. . . .
Jenny Schilling, 32, said she’s spent years trying to get her 13-year-old son, Owen, into an ABA treatment center. . . .
Owen recently was kicked out of a daycare for kids with special needs, and Shilling’s grandmother is getting too old to help, especially as Owen has gotten bigger and begun puberty. He attends a special needs school, but has been attacking staff recently.
“My son rips flat screens out of the wall. He grabs staff by their hair. He is out of control sometimes. And he can’t help it,” Schilling said. “He needs help.”
With help from an advocate, Schilling recently got approved for an at-home, after-school aide for Owen. But he’s still completely nonverbal and prone to violent outbursts when he gets frustrated.
“I can’t tell you how many aides I’ve been through because my son’s so out of control they can’t deal with it. They’re not getting paid enough to do it. I hate saying this, because I’m going to stay by my son’s side for the rest of my life, but I don’t blame them,” Schilling said.
When doctors have recommended ABA therapy, though, Schilling has found that nearby providers that accept Medicaid either say they have a two-year waitlist or don’t have any openings at all.
“They have no answers for us,” Schilling said.
What’s next for autism therapy in Ohio
Ohio could have actual rules for the first time soon. The state Medicaid department announced a proposed set of rules in December, seeking feedback from providers and others. The plan is to finalize them in April, the agency said. The process dates back to December 2022, when the agency first convened what it called an ABA Stakeholder Work Group. State officials hope the changes will help increase the number of ABA providers who accept Medicaid, providing more options for families.
The state last publicized suggested reimbursement rates for ABA providers in 2018, Fernandez said. The list since has been taken down.
But, in 2018, Ohio’s proposed reimbursement rate was $50.76 an hour. The national average is $62.80. The new rate in Ohio, proposed in the rules, would be $64.16 an hour.
There are other technical components to the rules, including what services are eligible for reimbursement and what documentary evidence providers must submit. Different groups, including managed care companies, ABA providers and autism advocates, have given feedback to the state.
Fernandez with the ABA trade group calls the new proposed rate “a huge improvement” when it comes to rates. She said she expects that when they’re adopted, they will attract more providers.
But, she said her colleagues will push the state on more technical aspects of the plan to make sure as many treatments are covered as possible.
“It’s been a long road. We’re very thankful that it’s out there. We just want to make sure that the final policy is consistent with federal rules and regulations and guidance,” Fernandez said.
Meanwhile, Gonda, the ABA provider in Youngstown, said families in Ohio don’t have time to wait.
“We have created a system with massive amounts of public funding that has no rules around it, and the people that are getting the shortest end of the stick are the children with autism that are on Medicaid,” Gonda said.
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