Before the program, Larry said, his daughter required constant monitoring at home.

“We basically took shifts where I would watch her through the day,” he said. “I’m a little bit heavier of a sleeper than Kandy, so she would take the night and we would have to check on her every few minutes to make sure she was OK and alive.”

While other treatment programs have targeted certain aspects of Levasseur’s medical issues, the Sheppard Pratt program seemed to be the only one that addressed them collectively, her parents said.

“I truly believe that if Rachel wouldn’t have gone to The Retreat this last year, she would not be alive today,” Kandy said.

Exhausting all options

The Levasseurs knew the specialized program was not in their insurance company’s network of covered providers, but they say CareFirst representatives led them to believe the company could make an exception, given that their daughter had seen little to no improvement at other treatment programs over the past seven years.

In situations where no in-network providers are available, CareFirst will sometimes enter into what’s called a “single case agreement,” which allows a patient to apply their in-network benefits to an out-of-network provider. Larry said several company representatives told him over the phone that if the family could prove Rachel was getting care she couldn’t get anywhere else, the insurance company would likely cover the cost.