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 (FEHBP) 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 (ABA) 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 such as California,. but Crockett, however, lives in Washington state and. He 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 goodis 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 as well.
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
"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 United States 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 be attending a camp that meets his needs for about $1,000 a week. Porter and her husband have pulled from savings and retirement accounts in order 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 that few people are aware of. She said she cannot get coverage for her son, but low-income children, Washington state employees and federal employees in other states can get coverage, she cannot get it for her son.
"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 all of their legal options.
Lorri Unumb, vice president of state government affairs for Autism Speaks, has been working with people like Crockett and Porter to try and secure coverage for their children.
She was part of the team of people who first convinced OPM to encourage ABA therapy coverage in 2012 and has pushed for individual states to cover itABA therapy for autistic children.
While OPM has told the group it does not require the coverage, it has shown interest in ABA therapy. the agency has dedicated time at national health insurance conferences to explaining its purpose and pushing for its inclusion.
"Our hope is that there will be even further pickup for the coming year. We expect significant movement along those lines but still there are no guarantees," Unumb said.
But tThe 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 also said the federal government should require ABA therapy coverage in its health insurance in order to be able to recruit and retain the best possible for federal employees.
"It's not that big of a stretch to realize that people will leave their job and go work at a job that does provide that coverage. If the federal government wants to remain competitive in their jobs, they should expand their insurance to cover it too," 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.
Meanwhile, Crockett has been meeting with his member of Congress, Rep. Danny Heck, D-Wash., and with Senators Maria Cantwell, D-Wash., and Patty Murray, D-Wash., to push for expanding FEHBP to include ABA therapy.
Heck agrees that federal employees should not have their coverage limited based on where they live.
"All federal employees and military personnel should have access to approved autism care coverage, regardless of what state or region they live in," he said in a statement.
Crockett believes members of Congress truly empathize with the parents of autistic children but believes they have yet to grasp the big picture. Autism rates are increasing, and the problem won't go away, he said.
"I feel disappointed that our political system has become so dysfunctional that this clear case of inequity cannot be solved in an expeditious manner; these kids with autism really need help now, not in a couple of years," Crockett said.