SILVER SPRING, Md., February 5, 2011 — Last Tuesday, Scott Campbell stood up during the public comment section of a congressional briefing for H.R. 2288, the Caring for Military Children with Autism Act (CMKAA) and spoke about his lung cancer. Doctors discovered it during his retirement physical, requiring him to stay on active duty for treatment.
That active duty, following 28 years of service, allowed his son, a 13-year-old severely affected by autism, to continue his applied behavior analysis (ABA) treatments and to have them paid for by his military insurance.
“I was glad I got lung cancer,” he said, letting the irony of his words seep into the room, “because it meant my son could get treatment.”
Campbell was addressing a situation that affects military parents of children with autism across the country. ABA therapy, which is often recommended to to treat autism, is not covered under TRICARE standard, the basic military insurance. Military families must seek coverage under the Extended Health Care Option (ECHO) which is only available after enrollment in the Exceptional Family Member Program (EFMP).
Once enrolled, coverage caps limit ABA therapy at an average of 11 hours per week, less than the 25-40 hours that is often recommended for young recently diagnosed children. Furthermore, ECHO is not available to retirees, even those forced to retire due to injury or disease.
Rachel Kenyon, mother to a daughter with autism and an army spouse, spoke at the briefing about her husband. “My husband has served honorably for 25 years,” she said. “He was a scout sniper in Desert Storm. He has earned a bronze star, an army commendation medal, and a combat infantryman badge with star for his service throughout two tours in Afghanistan. He has also been awarded a meritorious service medal, three more Army commendation medals, six Army achievement medals, and eight good conduct medals.”
“He has earned the right to retire,” she said. “But he cannot.”
The Caring for Military Kids with Autism Act would remove ABA treatment from ECHO, placing it under TRICARE Standard as medically necessary, removing the dollar cap on care, as well as making the therapy accessible to all eligible retiree dependents.
Rep. John Larson (D-CT), one of the bill’s co-sponsors, stopped by the briefing to share why he supports the bill. “It pains me to say this,” he said, “but the only people in this country who have made any kind of sacrifice since 9/11 are the men and women who wear the uniform.”
Larson called it immoral to ask so much of our military and leave their families without essential autism care. “We’re a better nation than that,” he said.
Representatives of Autism Speaks were on hand to discuss aspects of the bill and the scientific basis for the use of ABA, but the heart of the briefing came when three military spouses, representing the Army, Air Force, and Marine Corps, stood up to tell the stories of their struggles to find treatment for their children with autism.
Rachel Kenyon spoke about her daughter, Rachel Margaret, who was born with special medical needs, requiring intensive medical care. “Not once did we worry about finding her the medical care she required,” she said. “We felt blessed to be a military family and often joked that we only paid eight dollars for hospital parking for open-heart surgery—as it should be when you serve your country.”
However, when Rachel Margaret was diagnosed with autism in early 2010, Kenyon spent months trying to track down autism therapies and services. “I had learned that the small amount of services offered through the Extended Care Health Option were grossly inadequate and often impossible for military families on the move to access.”
Karen Driscoll, mother of a 13-year-old with autism, spoke of the need for adequate treatment options for military families. “We need our Marines focused on their mission; we cannot have them worrying about a $5,000 therapy bill or how their child will manage without the required medical care,” she said. “Family readiness is combat readiness.”
“Having a disability is a natural part of our human existence,” she continued. “Understanding this, we simply cannot ignore the needs of these brave military families. This is not only a public health issue, it is an issue of significant consequence impacting the readiness and retention of our all-volunteer force.”
Jeremy Hilton, whose wife serves in the Air Force and who is a former member of the Navy himself, spoke of the difficulties he and his wife had in securing treatment for their daughter. He addressed the additional cost of funding these therapies by saying that while not paying for treatment for autistic children after their parents retire may save money in the short term, “We remove a therapy that is helping them become productive members of society. In what world does that make any sense? Removing therapy for these children at retirement is a net negative for society.”
Driscoll also addressed additional costs, citing cost effectiveness benefits from providing early and intensive interventions. If children receive therapy early, perhaps their future publicly funded needs will be less. Furthermore, she said, “If my son had brain cancer, his care would be provided without limitation or concern for its budgetary impact. Because my son has a mental health disorder, it is okay to put a dollar cap on his care and make his treatments dependent on my husband’s active duty status.”
For military families like Scott Campbell’s, the hope that this bill will become law cannot come too soon. Campbell’s new retirement date comes later this year, after which his son, whom he describes as happy largely due to ABA interventions, will only get treatment that Campbell can pay for out of pocket.
These families no doubt agree with Rep. Larson when he said at the briefing, “What you need is less heart and more sleeves rolled up and help delivered.”
In addition to asking Congress to move this bill forward, its proponents are urging voters to get in touch with their representatives to ask them to support the bill. Simple instructions on how to do so are available at CMKAA.org. Follow CMKAA’s progress on Rachel Kenyon’s blog, StimCity.org. For more from Jean Winegardner on the issues facing military families and autism, please read Military families and autism: A battle on two fronts.
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times. Please credit Jean Winegardner and the “Communities at WashingtonTimes.com” when linking to this story.
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