LAS VEGAS (FOX5) — Heather Kobes watched her daughter transform from a typical toddler who sang “Happy Birthday” around the house to a child who almost completely stopped talking just before her third birthday.
After more than a year waiting for an autism diagnosis and finding effective treatment, Kobes discovered Applied Behavior Analysis therapy brought her daughter back. The stimming stopped. Eye contact returned. Her daughter learned to communicate using an iPad app.
Then came January and an insurance change that forced Kobes to choose between paying thousands more each month or watching her daughter lose the care that was changing her life.
Premium increases hit autism families hardest
Kobes paid a $30 daily co-pay for ABA therapy with her previous insurance plan. Her monthly premium was $2,400.
In late November, her insurance company called with news: her premium would increase $800 to $3,200 per month. The plan also limited ABA therapy to 1,500 hours annually and required families to pay 100% out of pocket for the treatment.
ABA therapy costs between $76 and $120 per hour. Kobes’ daughter needs several hours daily.
“They are making people pay 100%,” Kobes said.
Resources for families with autistic children
Families across Nevada face similar choices
Yasodora Cabrera, program coordinator for Families for Effective Autism Treatment, said Kobes’ situation is not unique across Nevada.
“They were kind of confused because they were expecting changes, but they were not expecting that they were hiding this information that this change went from more than 50% increased,” Cabrera said.
The increases stem from the expiration of Affordable Care Act subsidies. Health insurance watchdog groups report subsidized enrollees faced increases between 75% and 114%. Private insurance jumped between 21% and 26%.
“So now they are finding themselves saying, which therapy should I pick to provide for my son. And other ones, unfortunately, they have to stop for the services at all, because they can’t afford it anymore,” Cabrera said.
State agencies offer no immediate solutions
Several autism care centers contacted by FOX5 declined to comment. The Nevada Division of Insurance did not respond to requests for guidance.
The Governor’s Council on Developmental Disabilities said in a statement that Executive Director Sherry Nielsen is working with state agencies to ensure Nevada’s autism coverage “functions as intended.” The council offered no immediate solution.
“So either your child gets the treatment they medically deserve, what’s medically necessary, or they don’t get anything,” Kobes said.
Kobes switched to a different insurance plan that remains expensive and caps coverage at 1,500 hours. Her daughter returned to therapy.
“We are impacting the quality of life of a human being,” Cabrera said. “The only one paying the price is the kid. Not even the parent. This is serious.”
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