Soldier Fights for Options in Autism Care
March 24, 2008
By Ian Graham
FORT MYER, Va. (Army News Service, March 24, 2008) - Lt. Col. Scott Campbell seems to defy the laws of physics. His family life hints (if not proves outright) that true perpetual motion is a possibility.
Campbell is an operations officer for the U.S. Army Test and Evaluation Command and a father of two. Megan, 11, is a bubbly little girl who seems as eager to help as she is to play around the house. Ian, 9, is autistic. He doesn't speak, he's easily agitated (by a range of enemies such as a runny nose or loud noises) and he has a propensity for snatching French fries off of strangers' plates at McDonald's.
<b>A Father's Crusade</b>
"Welcome to my life," Campbell said.
In addition to his job with the Army, Campbell devotes much of his free time to education for military families with autistic children. Until recently, he was executive director of Parents of Autistic Children of Northern Virginia. He now serves as secretary for the Autism Society of America's Northern Virginia chapter; he's on the Fairfax County Advisory Committee for Students with Disabilities and the Commonwealth Autism Services board in Richmond.
"Because of his work speaking with doctors, teachers and officials about autism services, he's become our subject-matter expert," said Marcia O'Connor, manager of the Fort Myer, Va., Army Community Services Exceptional Family Member Program.
O'Connor's program acts as a liaison for any Army Family who needs help with a disability. She said that autism is a very particular case because while the condition is becoming more prevalent, doctors aren't able to keep up. Part of the problem is that autism is a cognitive impairment that affects language and social skills. Autism doesn't have an immediate medical solution, like a pill or injection. It's a long-term condition that takes significant effort to live with.
<b>Cracks in TRICARE</b>
When Campbell and his wife, Deb, moved the family to Virginia after a few years on duty in France, they found that TRICARE was ill-equipped to deal with their son's condition.
"When we first tried to get services for Ian, it was like we were the first ones to do it," he said.
In 1998, TRICARE set up a system to work with autistic clients. However, Campbell explained, it wasn't a feasible plan.
TRICARE required that autistic children requiring Applied Behavioral Analysis (work with a specialist to teach "normal" behavior) to see a "board certified" ABA therapist. The problem with that, said Campbell, is that certified therapists charge up to $200 an hour and generally don't do one-on-one work.
Board certified therapists act more often in supervisory roles for non-certified ABA therapists.
As a result, only about 10 percent of active-duty military children receive ABA through TRICARE. Even fewer get the 25 hours a week recommended by the National Research Council.
Campbell used his experience sifting through TRICARE's regulations and struggling to get the care his son needs to start an autism training course through ATEC. His first class was overbooked - even though he felt like it, he wasn't the first person to be let down by the options presented to him.
<b>A Worse 'Fix'</b>
The fruit of that frustration was a partnership with Senators John McCain and John Warner, who included a requirement for TRICARE to update their services to match current research in the 2007 National Defense Authorization Act. The company has done so, but their new program has met reviews that are mixed at best.
Now, Campbell said, a series of IQ tests are required in order for an autistic child to get ABA therapy. If the score is lower than 35, the child is ineligible. The logic of this plan is flawed in a number of ways.
First, the "cut-off" mark for mental retardation is a score of 70; the choice of 35 as TRICARE' standard is apparently just an arbitrary number. Secondly, the idea that if a child isn't smart enough, they're not worth the effort, is "exactly wrong," as Campbell put it. Finally, the stresses of testing an autistic child are much higher than testing other children.
"In essence, it becomes a barrier to getting the service," he said. "By requiring an IQ test, it almost makes the process worse."
And even after meeting the requirements, a TRICARE administrator can still reject the claim.
"We were told this [new program] would answer a lot of concerns and get us more services," Campbell said. "What it's giving us is a lot more work to do to fix it."
He now teaches his autism course quarterly and receives offers to speak before a variety of national conventions. He also gives presentations to parents at schools, law enforcement and TRICARE representatives. Much of his recent work has been with Marine Corps and Army leadership to repair the infrastructure for Families dealing with autism.
O'Connor said that for every class Campbell teaches, as many as 50 families attend and usually about 30 families are on a waiting list to attend. She also receives requests from around the country for his course materials. Since an article was published about Campbell and his son in the Combined Federal Campaign of the National Capital Area supplement last year, Campbell has become the face and voice of military Families with autism.
"Whenever we have a family come to us trying to find help with autism, we connect them with Colonel Campbell," O'Connor said.
Though juggling his job, his family and his role as an advocate is "getting kind of demanding," he said he feels obligated to share what he's learned.
"I kind of broke the code on this stuff," he said. "I don't want to keep that code a secret."
Campbell said that he's become so well-known in the autistic family community that he has people requesting that he come to parent-teacher conferences and meetings with physicians. But his philosophy is of the "teach a man to fish" school.
He knows how hard it is to get what the child needs and that every little thing is a battle. His goal is to share his insight with parents so the fight is easier.
"I'll teach you how to get what you need for the child," he said. "Many parents don't even know [what's available to them.] But many things are possible."
<b>Life Revolving Around Autism</b>
Of course, the driving force behind his work is the children and the families that live with the stresses of autism every day. He said that the strain of raising an autistic child, unfortunately, has a tendency to break marriages.
"It doesn't just affect the child," Campbell said. "You don't have a kid with autism; you have a family with autism. Eventually, everything you do revolves around autism."
In his classes for parents, he strongly advocates physical play for the child. All too often, he said, autistic children get cloistered away and become sheltered from the outside world. They can't be expected to function in normal situations if they're never in them.
To promote fun public activities, the Autism Society of America, Northern Virginia chapter, gave away tickets to the National Aquarium in Baltimore, Md. Campbell said between 25 and 30 families came on the trip.
Ian Campbell participates in a lot of sports. He plays in adaptive disability-oriented soccer and baseball leagues. He also takes swimming lessons and has learned to ski. Though he hated wearing ski boots (one of his "things" is a severe distaste for footwear), Deb Campbell said he had a lot of fun skiing. He didn't have any problems getting on or off the chairlift, she said, and he wasn't bothered by the cold (one condition caused by autism is a lack of sensitivity to hot or cold).
"He was clapping his hands," she said. "He was smiling. He seemed to be happy about it."
(Ian Graham writes for the Fort Myer "Pentagram.")