As an infant, Cody Kapacziewski hit all his developmental milestones except those relating to language.
“He didn’t babble much,” recalled his mother, Kimberly Kapacziewski. “He was walking on time, standing on time, but the language was never there.”
Cody was diagnosed with autism at 20 months and soon after, his parents started him in an intensive and expensive therapy program called applied behavior analysis, or ABA. Cody, now 3, responds to his name and has made many other strides.
Yet he is only receiving 12 hours of ABA therapy a week, not the 25 hours a week that his developmental pediatrician recommends. That’s because Tricare, the military insurance provider that the family relies on, does not cover any more than that.
Cody’s father, Army Ranger Joe Kapacziewski, has been deployed 11 times since he joined the Army on Sept. 13, 2011. After his right leg was shattered by an enemy grenade in 2005, he chose to have it amputated to improve his mobility and remain a Ranger. (He is due back at Fort Benning, Georgia, this week from his latest deployment in Afghanistan.)
The Kapacziewskis and other military families whose children have autism are pressing for Congress to require Tricare to expand coverage for ABA.
They have found an outspoken ally in U.S. Rep. John Larson. The Democrat, who represents Connecticut’s 1st District, is a member of a congressional caucus on autism and he first learned about the military coverage gap from a group of constituents.
“To find out that your own government is denying this … it’s just insane,” Larson said. “You could have taken my jaw off the floor.”
Larson, along with Republican Rep. Tom Rooney of Florida, included a provision in the defense authorization bill that increases coverage for ABA for autism. The measure also extends ABA coverage to those with other developmental disabilities such as Down syndrome, which are currently not eligible under Tricare.
The bill passed the House last month and Larson expressed hope it will make it into the final version of the Senate bill as well. In that chamber, it has the backing of key members from both sides of the aisle, including Sen. Patty Murray, D-Wash., and Sen. Marco Rubio, R-Fla.
“This is a rarity in Congress where you get bipartisan support and consensus,” Larson said. “I’m optimistic about its success.”
The transient nature of military life makes the benefit all the more necessary, advocates say.
“Military families have a lot of more unique and challenging needs than many other families,” said Kathryn Greene, executive director of The Light House. Based in Groton, Conn., the facility provides educational services for children ages 7 to 21 with intellectual and developmental differences, many of whom hail from military families in southeastern Connecticut.
“If someone is sent overseas and deployed, they shouldn’t have to worry that their children are getting the services they need,” Greene added.
ABA treatment is especially important in the early years of a child’s life, immediately after diagnosis. Thirty-seven states require certain insurers to cover treatment of autism-spectrum disorders, provided such treatments are deemed “medically necessary.” The health insurance plan covering most federal employees also requires such coverage.
“If 37 states and the federal employees [insurance plan] consider it as necessary medical care, why should Tricare be different?” asked Karen Driscoll, associate director for federal government affairs and military relations for Autism Speaks.
Under current coverage, ABA therapy is capped at $36,000 annually, which pays for about 12 or 13 hours of treatment per week, Driscoll said. That leaves the families themselves to make up the difference — something that can be challenging on a military salary — or forgo the additional treatment.
“Families are grateful for the benefits they have, but we want to make sure their needs are being met,” said Driscoll, the mother of a child with autism and the wife of a recently retired Marine.
Kimberly Kapacziewski said her family cannot afford to pay $36,000 more a year for the additional 12 hours of ABA that Cody should be receiving.
While he has made great strides, there are still challenges, his mother said. “He just wants to wear fleece all the time,” she said, a preference that’s just not practical in Georgia, where the family lives.
“The thing with autistic children is, the more early intervention you can get, the better,” Kimberly Kapacziewski said. “I just wish the legislators would understand that every day they’re waiting is another day we could be helping Cody.”