Some plans leave loophole for autism services

While Montana law requires insurance plans to support autism services, many private companies have found an exemption to the requirement. Those exceptions leave parents searching for ways to afford treatment for their child’s disability.

Heather Brothers watched her son stand on his toes to peer out their Somers home living room window to count animals. Her son Danny was diagnosed as autistic in June. Though he’s two years old, his vocabulary only consists of counting one through 15.

In the last month, Brothers has worked through a collage of doctors to see what services could help her son developmentally catch up. Through the process, she discovered those services aren’t covered by her insurance and are too expensive for her to pay for out-of-pocket.

“It’s maddening,” Brothers said. “I’ve done the right things — I have a good job and insurance, but I can’t provide my son with all he needs. He somehow isn’t protected.”

Brothers is one of an unknown number of Montanans who have insurance through a self-funded health plan by their employer — one of the few types of insurance states can’t regulate.

Simply put, self-funded plans potentially can save large private businesses hundreds of thousands of dollars and filter down what a business is required to cover.

The plan allows an employer to essentially pay for its staff’s medical claims out-of-pocket instead of paying an insurance company for “what if” situations.

The employer also largely gets to decide what it wants to cover or avoid paying. That’s due to a section in the Affordable Care Act that exempts self-funded private industry plans from health mandates such as speech therapy.

The plans also are protected from excise tax on health insurance premiums and community rating on premiums.

So, even though Brothers lives in one of the 45 states that requires services for autism, she hasn’t been able to tap into those treatment options.

Brothers works as a medical coder for Himagine Solutions, a remote company based out of Tampa, Florida. According to the Himagine Solutions website, the health-care outsourcing provider has “the largest team of inpatient and outpatient coders in the U.S.”

“Danny was diagnosed as autistic last month, but we’ve been living with his autism much longer than that,” Brothers said about her son. “The diagnosis opened my eyes to the fact that my son wasn’t going to get the treatment he needs unless I pay out-of-pocket for it because my insurance doesn’t find it necessary. But I can’t afford that care.”

Christina Goe, a general counsel for the Montana State Auditor’s Office, said this situation isn’t unique.

“This is the case for many Montanans and people across the country,” Goe said. “This isn’t news that larger businesses, nationwide, are self-insured.”

Since the auditor’s office doesn’t regulate self-funded insurance plans, it’s hard to know how many Montanans fall into this gap.

According to data from the U.S. Department of Health and Human Services, more than 82 percent of U.S. employers with 500 or more employees are self-insured.

Goe said in recent years federal and state laws have pushed to expand health plan coverage.

“The Affordable Care Act put more requirements on the employer plan than any law ever before to cover essential health benefits,” Goe said. “But again, that is not required for self-funded private employer plans.”

Instead, private industries follow guidelines established by a 1974 act known as the Employee Retirement Income Security Act, which has fewer requirements compared to the Affordable Care Act.

Goe said that while private companies can avoid the state autism services mandate, it still applies to health plans established or maintained by governmental entities or churches, even if they’re self-funded.

“The [laws] the state Legislature had the power to extend, were extended,” Goe said. “Montana also added to its Medicaid benefits last year. Its private employer self-funded plans we cannot reach.”

Brothers held a handwritten list of doctor-suggested services: occupational therapy, applied behavioral analysis and speech therapy.

She pays $158 each week for Danny’s speech therapy. To afford that, she has set up a payment plan with the health-care provider.

As Brothers talked, her son mumbled numbers in the next room.

“Danny doesn’t talk, he counts,” she said, looking toward his bedroom. “He doesn’t say things like cup or mom.”

Scattered between art supplies and stacks of paperwork on her kitchen table outlining why her insurer should provide habilitative services are statistics. One from Centers for Disease Control estimated one in 68 children in the U.S. are born with autism. Another from a 2015 University of Washington study described the success rates for autistic children who receive early-intervention therapy.

“Having evidence that I’m right, that gives me validation. It reduces that helpless feeling,” she said.

In June, Brothers began an online petition that aims to dissolve private industry’s ability to opt out of covering autism services. As of July 1, she had 111 signatures.

She said she doesn’t have a goal for the number of signatures she’ll collect or a time line to finish the petition.

“I know for this to change, it would have to be a legislative battle at the federal level. I mostly started it to make sure I wasn’t the only person who felt this way,” Brothers said. “I wanted to see people stand up for children who don’t have a voice … who need to be given a fair chance for as normal a life as possible.”

To ask about state autism services call the Auditor’s Office at 800-332-6148.

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To learn more about Brother’s petition, go to https://kentucky.change.org/p/ryan-zinke-demand-that-all-insurance-companies-cover-autism-services.