Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.
Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered
Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions. There are good and bad school districts for special education. Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program. With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.
Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.
Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.
“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’ But I had no answers for him. I had no hope to offer.”
Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.
Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”
Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”
Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.
“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.
Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”
You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.
The following blog post by an Army Sergeant Major deployed to Afghanistan, who must remain otherwise anonymous, demonstrates vividly the extraordinary challenges faced by our military members raising children with autism. Visit ‘Welcome to Stim City‘ to follow Mrs. Sergeant Major’s Blog and to read original post.
Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.
The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”. The radio operator answers the call; “This is Iron Gray TOC. Roger, requesting air support at this time.”
Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan. I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater. I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.
So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved. My training kicked in. Clear the airspace and give me a fire mission of 155mm artillery.
It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in. AUTISM!? Artillery isn’t going to help that.
Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard. I just could not believe my little girl had autism. Yes, she was born with multiple disabilities but autism was never on the radar. Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism? Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me. To say I was busy during this deployment would be a gross understatement. The TOC was the heart of the Battalion’s operations and the heart never stopped beating. However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around. Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies. I assumed RM’s school would be all over that. Evidently, as it turned out the school system in our town was not a “Friendly” element.
Never leave a fallen comrade.
Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind. I was appalled. Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator. It began to affect my performance. I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind. Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.
I decided to weigh in on the issue with the town. Lucky were the town personnel who were failing my child that were out of range of my artillery support. I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan. Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school. Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care. Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.
TRICARE should be like Combat Support. It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.