U.S. Rep. John Larson, D-1st, introduced a bill this week that he said will clarify the insurance coverage of autism treatment for children in military families.
The measure is designed to ensure that military families with dependents who suffer from autism have access to forms of behavioral health treatment. Research has shown that children with autism who have participated in a treatment form known as applied behavior analysis, or ABA, have significantly better outcomes and are more independent later in life.
But military families are insured under the TRICARE program which currently segregates ABA under a separate program. That program, which is called Extended Care Health Option, or ECHO, contains an annual spending cap for ABA of $36,000.
Karen Driscoll, a mother whose husband is in the U.S. Marine Corps, said the current segregation “puts an arbitrary dollar cap on a child’s treatment program. It doesn’t address the prescribed level of care, the effective level of intervention an individual with autism would require.”
On a conference call with reporters Wednesday, Driscoll said that $36,000 a year translates roughly to 11 hours of therapy a week under TRICARE billing rates. That amounts to less than half of what is medically recommended for a 2-year-old child, she said.
Peter Bell, executive vice president for programs and services of Autism Speaks, agreed the spending cap was set well below adequate. He noted that the severity of autism varies tremendously and as a result so does the amount of treatment required. But he said the minimum recommended weekly treatment is 25 hours. Many children benefit from between 30 and 40 hours of treatment a week, he said.
“So many of our military service members are facing thousands of dollars out-of-pocket each month or the difficult decision of having to forgo care,” Driscoll said.
The current law also limits coverage of treatment to the dependents of active duty service personnel. Driscoll said that means that despite her husband’s almost 28 years of service and two combat tours, when he retires her child’s coverage of the treatment would terminate.
The bill also will ensure that the dependents of retirees continue to be covered, according to a statement from Larson’s office.
Aside from Driscoll, Larson said the bill is intended to help people like Rachel Kenyon, whose daughter was diagnosed with autism last year while her husband was serving his second tour in Afghanistan with the 102nd Infantry regiment of the Connecticut National Guard.
She described that period of her life as terribly difficult.
“As an active guard reserve family in Connecticut, there were no set resources or points of contact to get care and while I struggled to navigate the process and red tape, I became increasingly aware that our military communities across our entire nation were not being serviced appropriately or with dignity in the face of an autism diagnosis,” she said.
Larson said the idea for the bill came from a meeting he had with families of children with autism in February. At that West Hartford meeting, sponsored by the Connecticut chapter of Autism Speaks, Kenyon and her husband raised their concerns and Larson, a member of the Armed Services Committee, seemed eager to help.
“We’re talking about a very unique niche of our community which is already very unique when you go outside of this room,” she said.
She pointed out that there was nothing that could be done about the problem on a state level because state legislation could not affect the Department of Defense. She described the complex and confusing insurance process she undertook while her husband was deployed.
“So you’ve got families where one or both parents are not necessarily accessible while they are trying to deal with this crisis. The enrollment process through TRICARE is shameful,” she said.
Larson told the Kenyon’s the situation they found themselves in was absolutely immoral.
The conversation, a few minutes of a meeting that lasted over an hour, seemed to stick with Larson. Walking to his car, he said the TRICARE issue was among the most concerning issues he heard from the group of parents.
Click here to view photos of the meeting at StateoftheSpectrum.org
Four months later, Shannon Knall, the state’s Autism Speaks chapter advocacy chair, said she was happy with Larson’s work on the issue.
“As a parent and an advocate, this is exactly what we want from a legislator. To be able to come talk to them, have them hear our stories and work to address them. And that’s exactly what happened here,” she said.