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.
This guest post is by Karen Driscoll, who is a Marine wife, mother of three (one with autism) and ACT Today! For Military Families Campaign Director.
The expression “Warrior Mom” is often used throughout the autism community. It is a badge of honor describing the battles mothers have engaged in to help their children experience the opportunities in life every child deserves. As Warrior Moms, we put our dukes up to fight for care and treatment; we work diligently to educate and build awareness within our communities, and we mentor and support others along the journey. We are fierce. We are wise. We are compassionate. We are Mothers.
“Warrior Mom” takes on a whole new meaning when put in the context of the military family impacted by autism. The military family wages a battle on two fronts: one for our country and another for our children. As a Marine wife and a mother of a young child with autism, this is very personal. I understand all too well the challenges autism brings to the military family and I have become a vocal advocate for our children with special needs.
I work alongside several other military spouses (across all branches of service) who have children with autism, to raise awareness of the challenges that military families with special needs face. Our mission is to enhance the quality of life for military families with disabilities and special healthcare needs by advocating for the medical necessity of evidence-based treatments and other much-needed family supports and assistance. Working toward comprehensive policy and legislative reform is never an easy task, especially when putting things in context of the Department of Defense or the Senate/House Armed Services Committee.
The statistics are staggering. One in 88 military children has a diagnosis on the autism spectrum, and less than 10 percent of these special children are receiving recommended care and treatments. This is why First Lady Michelle Obama met with Marine Corps families at Camp Pendleton recently to discuss policy reform and to work toward improving services and supports for military children. I was fortunate to be part of this important meeting with the First Lady and witness what another Marine wife described as “the opportunity for parents of children with autism to break through the glass ceiling” and reach key individuals who are in a position to resolve many of the issues our families face.
Mrs. Obama listened as parents highlighted the challenges military families with special needs experience to access appropriate care and treatment services through TRICARE, the health insurance system for members of the U.S. military. Families impacted by autism discussed the tremendous emotional and financial strains caused by the limited services under existing TRICARE programs and emphasized the importance of improving TRICARE coverage of autism care.
“My goal is to help the rest of our country better understand and appreciate the incredible service of you and your families, and to make sure your voices are heard back in Washington and that your needs are met,” said Mrs. Obama. “I am launching a national challenge to Americans to find ways to rally support of the military family. One percent of America may be fighting our wars, but 100% of America needs to be supporting parents in that fight.”
I am humbled by the First Lady’s commitment to the military child. Military families shoulder significant responsibilities today and make tremendous sacrifices few can fully appreciate. Military families impacted by autism have additional stresses as they cope with extraordinary circumstances and limited treatments our precious children urgently need and deserve. Autism is treatable, and with treatment our children can make significant gains, but funding for these vital services is limited and often elusive for the military family. I echo the First Lady’s challenge to America to please support military families who have sacrificed so much and I ask for your particular attention to the unique needs of military children with autism.
In the words of First Lady Michelle Obama, “We’re working to be an America where more people not only understand the service and sacrifice that [military] families make, but where more Americans take action to help lighten your load.” Military families deserve the quality of care equal to their heroic service and sacrifice in defense of our nation, our people, and our freedom.
To learn more about legislation and policy initiatives for the military family affected by autism, please visit www.autismvotes.org/military.
ACT Today! (Autism Care and Treatment Today!) is a non-profit organization dedicated to providing funding to families that cannot afford or access the treatments their children with autism need. It was founded by Dr. Doreen Granpeesheh, a renowned expert in the field of autism and Applied Behavior Analysis. Through direct donation, corporate sponsorship, and community generosity, ACT Today! is changing the lives of children TODAY. Recognizing the extraordinary challenges military families impacted by autism experience, ACT Today! has launched ACT Today! for Military Families a fundraising campaign benefiting military children with autism to help defray out of pocket medical costs. For more information on how to help a military family impacted by autism, go to: www.acttodayformilitaryfamilies.org.