WASHINGTON – Cheryl Chafos walks her 10-year-old son Zachary to the bus stop at 6:45 every morning. His ride to school is an hour and fifteen minutes long.
Soon after, Chafos helps her toddler into the family car so she can drive a third son, Andrew, 11, to his private Catholic school a half hour away from their home in Anne Arundel County, Maryland.
Chafos says she is willing to deal with this hectic transportation schedule because each of her boys is getting the education he needs. Andrew, a gifted academic, attends a Blue Ribbon school of excellence. And Zachary attends the Kennedy Krieger School, a private institution tailored to educate children like him who have autism.
Zachary Chafos was diagnosed with autism in 2004. Since then, his mom has had to fight to get him the education and other care that he needs. It isn’t easy.
Meanwhile, his father has been fighting another kind of battle. Shortly after Zachary was diagnosed, his dad – an Army colonel – was deployed to Iraq for 13 months. He is preparing for deployment to Afghanistan in June.
“My husband puts the Army first with his career, but we also put our children’s education as a priority,” Cheryl Chafos said. “It’s very stressful – usually on the wife, or the stay-at-home parent.”
The Chafos family is not the only one fighting a two-front battle: one in 88 military children is diagnosed with autism, a developmental disability that comes with a whole host of necessary supports and treatments. Most civilian families can get these necessities covered under their health care benefits – but military families face a unique struggle.
TRICARE, the health care program serving uniformed service members and their families, provides a limited autism benefit – up to $36,000 per year – available only to dependents of active duty personnel. Certain behavioral treatments are excluded from coverage, namely Applied Behavioral Analysis, or ABA, the standard for care in the treatment of autism.
“Our armed forces have supported us, so should we support them,” said Stuart Spielman, senior policy advisor for Autism Speaks, the nation’s largest non-profit autism advocacy and science organization.
Autism Speaks and parent activists have advocated the passage of legislation that would require TRICARE to include behavioral health treatment. The bipartisan Caring for Military Kids with Autism Act would provide military families with a welcome bit of relief.
What is autism?
Autism is a developmental disorder that affects social interaction and communication. Symptoms usually start before age three and can cause delays or problems in many different skills that develop from infancy to adulthood.
Health care providers think of autism as a “spectrum” disorder, a group of problems with similar features. The main signs and symptoms of autism involve issues in the areas of communication (verbal and non-verbal), social, and routines or repetitive behaviors, according to the National Institute of Child Health and Human Development.
There is no cure for autism, nor is there one single treatment. Behavioral therapy is one way to manage the symptoms of autism, reinforcing wanted behaviors and reducing unwanted ones. It is often based on Applied Behavior Analysis (ABA), which is considered by many the standard of care in the treatment of autism.
According to Autism Speaks, behavior analysis is a scientific approach to understanding behavior and how it is affected by environment. ABA is “the use of those techniques…to bring about meaningful behavior change.”
This year, more children will be diagnosed with autism than AIDS, diabetes and cancer combined, according to Dr. Geraldine Dawson, chief science officer for Autism Speaks and professor of psychiatry at the University of North Carolina at Chapel Hill School of Medicine.
“Autism is no longer considered a rare condition,” Dawson said. “It represents a significant public health challenge.”
The World Health Organization estimates the annual cost of caring for people with autism in the United States at $35 billion annually. Dawson cited statistics claiming a cost closer to $90 billion.
Families often have a hard time paying for all the needed services; early intervention alone can cost up to $50,000 per year.
“Children with autism are more likely to have unmet health care needs,” Dawson said. “For military families, this is compounded by the stresses associated with their service.”
“Family readiness is combat readiness”
For active members of the military and their families, all medically necessary services fall under the umbrella of the TRICARE basic program – except for one important autism service.
According to a 2007 report by the Defense Department, the TRICARE basic plan covers services including physicians’ office visits, immunizations, and interventions such as speech therapy, physical therapy and occupational therapy. Additional therapy may be covered by the plan when it is considered to be medically necessary.
On its official website, TRICARE defines “medically necessary” as “appropriate and necessary…of a beneficiary’s illness or injury to accepted standards of medical practice and TRICARE policy.” ABA currently falls under this definition in 29 states, but it does not apply for TRICARE coverage. The program assumes that since autism is a spectrum disorder, not all forms necessitate ABA therapy.
Kinzey Fishe, age 4, cuddles up to her mother Katja at a press conference for H.R. 2288, the Caring for Military Kids with Autism Act. Kinzey's older brother Quinn, 6, is autistic. (Rachel Morello/Medill)
Other services excluded from the medically necessary definition – and therefore coverage – include bone marrow transplants, electrolysis, and dyslexia treatment.
Instead, TRICARE segregates ABA therapy into a separate arm of coverage, commonly referred to as the Extended Care Health Option, or ECHO program.
ECHO’s eligibility requirements stipulate that only dependents of active duty service members can get access to prescribed care, significantly restricting the number of people that can receive treatment. That rules out even young retirees and also forces active duty families to apply for a program about which they may not know.
According to Karen Driscoll, a Marine Corps wife and mother of an autistic son, the exclusion creates an obstacle to care.
“Automatically, you have these barriers that require parents to jump through…hoops to get access,” Driscoll said. “Our kids are actually receiving ineffective or less than medically recommended care.”
Locating services is another hurdle. Living on military bases limits selection for schooling, so some families must resort to outside institutions to get special autism services. Such is the case with the Chafos family.
“There are good and bad school districts for special education,” said Spielman. “Moving from one place to another may mean going to the back of a waiting list.”
Even when families are able to access services, paying for them can amount to a substantial financial burden. Comprehensive treatment programs can cost about $6,500 a month; TRICARE insurance covers on average $3,000 a month.
“This is not just a minor, insignificant out-of-pocket cost,” said Driscoll. “Simply because we’re trying to provide the treatments and care our children have been medically prescribed, we’re spiraling into debt, and there’s really no way out.”
“It is extremely important our [military] focus on their mission; we cannot have them worrying about a $5,000 therapy bill,” Driscoll continued. “Providing appropriate family care has a direct impact on the war-fighter. Family readiness is combat readiness.”
An Act of patriotism
Parents like Karen Driscoll have mobilized to get the word out about their situation, trying to get public policy consistent with their needs.
The Caring for Military Kids with Autism Act would clarify TRICARE policy by calling Applied Behavior Analysis a medically necessary service, bringing it out of the Extended Care Health Option arm and into basic coverage. Under this legislation, ABA would be provided without limitation for active members and retirees – nobody would be excluded from coverage of care.
Sen. Kirsten Gillibrand, D-N.Y., Rep. John Larson, D-Conn., and other House members have thrown their support behind the bill.
“It’s immoral that we would have a credo to leave no soldier behind and leave no veteran behind…[yet] the health care system that the nation provides doesn’t follow through,” Larson said. “We’re a better nation than that.”
“TRICARE needs to make sure that it closes this gap and provides the funding for the families that they need.”
Cheryl Chafos is happy with the school that Zachary is attending. She hopes legislation passes that will allow her husband to retire from service, while still receiving benefits for their son to continue his education and care.
“My husband has been in the Army for 23 years,” Chafos said. “We’re hoping that he can retire when he gets back [from deployment in Afghanistan] – that’s why this bill is so important.”
Chafos is confident that the country she serves will come through for her, her husband, and her son.
“We have a long journey ahead, but we’re getting there,” Chafos said. “I think we’re trucking along.”
