Where federal health insurance fails autistic children

When Matt Crockett's 2-year-old son, Mark, was diagnosed with autism, the Air Force Reserve technician assumed his government insurance would help cover the cost of the treatment.

He discovered the Federal Employee Health Benefits Program encourages — but does not require — insurance carriers to cover the cost of the leading treatment for autism. In fact, only 23 states offer federal health insurance plans that cover Applied Behavior Analysis therapy, which leaves federal employees trapped in a patchwork of coverage that costs tens of thousands of dollars a year.

Federal employees can receive coverage for ABA therapy if they live in certain states. Crockett, however, lives in Washington state and cannot get an FEHBP plan that covers it.

"The government is asking me to not take my son to therapy — which is not an option — or pay $60,000," Crockett said. "It's the flip of a coin. It really is a case of discrimination based on geography."

ABA therapy, a form of intense one-on-one instruction, is covered by the military's health insurance, Tricare. Crockett is an Air Force Reservist, but federal law prohibits him from using Reservist Tricare because he is eligible for FEHBP.

The Office of Personnel Management, which oversees the FEHBP, excluded coverage for ABA therapy until 2012. The agency reversed course in 2013 and now "strongly encourages" insurance companies providing coverage to federal employees to cover ABA therapy.

The FEHBP already covers other services commonly used by children with autism, including speech and occupational and physical therapy, an OPM spokesperson said. The agency is also allowing insurance companies to disregard traditional rules requiring coverage cuts for any benefit increases as long as they are adding in ABA therapy. The rule is traditionally used to limit premium increases.

"For 2016, OPM is pursuing negotiations with plans that have not yet added this benefit, emphasizing the growing number of providers and expanding research linking behavioral interventions with positive outcomes," the spokesperson said.

But while OPM can require insurance companies to include ABA therapy in their coverage plans, the agency has no plans to do so.

For Andrea Porter, a U.S. probation officer, the lack of coverage forces her to pay massive out-of-pocket expenses to get therapy for her 5-year-old son, Nathan, who also suffers from apraxia of speech, making it difficult for him to communicate effectively.

His frustration can grow intense as well, causing him to bang his head on hard surfaces such as concrete, making ABA therapy particularly important, according to Porter.

This summer Nathan will attend a camp that meets his needs for about $1,000 a week. Porter and her husband have pulled from savings and retirement accounts to get Nathan the therapy he needs.

"We are not wealthy people," Porter said. "We are hoping the camp is enough so he won't backtrack."

Porter said she is at times frustrated and angry because she falls into a little-known coverage gap. She said she cannot get coverage for her son, but low-income children, Washington state employees and federal employees in other states can.

"Here I am working hard for my family and playing by the rules and paying for my health insurance and I find myself in a situation where it's my child not getting the coverage," Porter said.

Porter said they have appealed the health insurance's denial of ABA therapy and are awaiting the result. If their appeal is rejected, they plan on retaining an attorney to explore their legal options.

Lorri Unumb, vice president of state government affairs for Autism Speaks, has been working with people like Crockett and Porter to secure coverage for their children.

She was part of the team of people who first persuaded OPM to encourage ABA therapy coverage in 2012 and has pushed for individual states to cover it.

The organization along with parents will continue to press lawmakers to expand ABA therapy coverage within the FEHBP, Unumb said.

"I absolutely think that constituents making their voices heard to their lawmakers is critical to making this happen," Unumb said.

She said until the FEHBP fully covers ABA therapy families such as Crockett's and Porter's will continue to suffer under costs that can range up to $70,000 a year.

"For these families it's absolutely backbreaking financially. It's devastating," Unumb said.