Sgt. Maj. William Kenyon of Manchester is an active-duty veteran of Desert Storm — the early-1990s conflict in Iraq — as well as two tours in Afghanistan. His wife, Rachel, is fighting within the military for better autism coverage through the armed forces' health insurance program, TRICARE.
"Having served 25 years in the infantry so far, he has seen it all, been there and done that, but when autism came knocking on our door, no uniform, no arsenal, no commendation medals could have prepared us for the fight ahead," Rachel Kenyon said of her husband. "Not a fight against autism, but a fight to secure the medical treatments our daughter with autism needed."
Rachel Kenyon brought the issue to the attention of U.S. Rep. John B. Larson, D-1st District, who then sponsored legislation to expand autism services for active and retired members of the military and the family members covered by their insurance. The legislation is part of a military spending bill for fiscal year 2013 that passed the U.S. House and now faces the Senate as Congress takes on broader issues of how much to spend on defense and setting the nation's budget during a presidential election year.
Autism is a neural disorder that affects the development of social and communication skills. The physician-recommended treatment is many hours of "applied behavior analysis" each week, which can improve a child's ability to learn, reason, communicate and adapt to different environments, according to Autism Speaks, an advocacy group.
Applied behavior analysis is covered by TRICARE's Extended Care Health Options (ECHO) up to a total of $36,000 a year for a military family. The portion a family has to pay ranges from $25 to $250 per month, with low-ranking enlisted members paying less and high-ranking officers paying the most.
The $36,000 limit doesn't include the amount TRICARE will pay for home health care, too.
The trouble is, $36,000 pays for an average 11 hours weekly of applied behavior analysis for a child with autism when the American Academy of Pediatrics and the National Academy of Sciences recommends 25 to 40 hours of treatment, Rachel Kenyon said.
Also, the services aren't covered for military retirees, including those who are forced into retirement because they were injured in war, Kenyon said.
"I was certainly aware of autism . . . but I was unaware of the enormous gap that existed in our TRICARE system," Larson said.
Outside the military, heath coverage for autism varies from health plan to health plan and from state to state. A total of 34 states, including Connecticut, have some type of law related to autism and insurance coverage, according to the National Conference of State Legislatures.
Opponents of mandated autism coverage say it raises premiums on health insurance by about 1 percent, and could be responsible for a rate hike of 1 to 3 percent in the future, according to the Council for Affordable Health Insurance, a group of policy analysts and actuaries that research the economic impact of mandated coverage.
In states that have mandated autism coverage, some allow insurers to set a an annual limit to autism benefits. For example, Rhode Island set an annual limit of $32,000 for applied behavioral analysis while New York's limit is $45,000, according to a December 2011 assessment by America's Health Insurance Plans, a health insurance trade group.
State mandates apply to fully-insured health plans, but not to larger, self-insured employers that aren't subject to the mandates. An advocacy group, Autism Votes, says that "nationwide, few private insurance companies or other employee benefit plans cover autism therapies." Connecticut's mandate, which took effect Jan. 1, 2010, requires insurers to cover diagnostic assessments for autism. The law allows insurers to set annual limits on behavioral therapy of $50,000 for a child under 9; $35,000 for a child 9 to 12; and $25,000 annually for a child 13 or 14, according to Autism Votes.
America's Health Insurance Plans spokeswoman Susan Pisano said coverage varies from insurer to insurer, and those that don't offer coverage say that applied behavior analysis is an educational expense — not a medical expense. A 2007 report in the official Journal of the American Academy of Pediatrics discusses the applied behavior analysis as an educational tool, Pisano said.
At least one insurer, which Pisano did not name, also considers applied behavior analysis to be experimental.
"Some of the arguments have been that applied behavior analysis is an experimental treatment because of its lack of large, randomized controlled trials," said John D. Molteni, director of the Institute for Autism and Behavioral Studies at St. Joseph College in West Hartford. "Although this has been addressed multiple times across many states — obviously, through the work that was done here in Connecticut several years ago in our autism legislation and most of the statewide legislation that Autism Speaks has worked on."