Many military families are impacted by autism. Based on current prevalence rates, as many as 12,000 children in the military families (active duty, reserve and guard) may have autism. These families are substantially affected by the financial and emotional costs of raising a child with autism.
Military life is particularly difficult for children with autism and their families. Given the frequent duty station changes and social turmoil of military service, military children with an autism spectrum disorder often face additional challenges with which their civilian counterparts do not have to contend.
A specific feature of autism is extreme difficulty with life, routine, or environmental changes of any kind. These children need a set routine, stability, and continuity of services and relationships. Military life by its nature provides few of these needs. This situation is likely to weaken the morale of the parent serving the military as well as the caretaker at home.
Military Family Autism News:
February 3 Update:
NBC's Andrea Mitchell Examines Plight of Military Families Raising Kids with Autism
WASHINGTON, DC -- NBC correspondent Andrea Mitchell examined the plight of military families raising kids with autism, interviewing military spouse Rachel Kenyon, whose husband has served multiple deployments to Afghanistan, and Peter Bell, Autism Speaks executive vice president for programs and services.
On MSNBC’s Andrea Mitchell Reports, Kenyon described the difficulties military families encounter in finding services for their children and the disruption caused by multiple deployments.
Bell discussed the Caring for Military Kids with Autism Act (HR.2288) which would ensure that the military’s TRICARE insurance program covers all military personnel, regardless of their duty status.
As now structured, members of the military lose autism benefits for their children when they retire, even when wounded in action and medically retired. At a Congressional briefing Tuesday on the issue, Rep. John Larson of Connecticut, the sponsor of HR.2288, called the treatment of military families raising loved ones with autism “immoral.”
Military Families Tell Their Stories to Congress
WASHINGTON, DC -- Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when 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.
They were greeted by Rep. John Larson (D-CT), the sponsor of the Caring for Military Kids with Autism Act.
"The only ones who have made any kind of sacrifice since 9/11 are the men and women in uniform," said Larson (left). "You are a soldier in the field and you are struggling, and worried about your child at home? It's immoral.
"The nation they are serving can't come up with treatments? Give me a break. Better yet, give them a break. It's the right thing to do; it 's the American thing to do."
Hosted by Sen. Kirsten Gillibrand of New York and Larson, the briefing 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. Larson's bill (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 (right), 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. 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.”
Autism Speaks Urges Military Families to Submit Their Stories to Congress with Videos
NEW YORK, NY -- Autism Speaks is inviting military members to submit their stories about the challenges of raising children with autism by video. Send them to us and we will share them onYouTube so we can send your message to Congress.
See the video below to learn how you can take part!
Exceptional Parent: 'Righting a Wrong: The Caring for Military Kids with Autism Act'
Dec. 9, 2011-- Exceptional Parent published an Autism Speaks blog urging Congresss to enacted the Caring for Military Kids with Autism Act. In addition, Autism Speaks marked the 70th anniversary of Pearl Harbor Day by urging all of its advocates through social media to ask their Members of Congress to sign on to the bill, HR.2288.
Read the blog here.
NCD Urges 'Prompt Action' to Improve Access to Disability Services for Marine Corps Families
WASHINGTON, DC (Nov. 28, 2011) -- The National Council on Disability (NCD) today released a study urging "prompt action" by Congress, the military and the Obama administration to improve access to health care, special education and longterm services for U.S. Marine Corps members caring for dependents with disabilities, such as autism. The 275-page report documented the experiences of Marine Corps families in accessing disability services and the impediments they face, and recommends how access can be improved.
"NCD commends the Marine Corps for making significant improvements to their EFM (Exceptional Family Member) program during the time this study was being conducted..." the report concluded. "However, many of the changes necessary to improve the supports available to military families with EFMs are beyond the control of the Marine Corps and may require statutory and regulatory changes to meet these needs."
The report noted that the U.S. armed services recently passed the 10-year marker of deployment in various theaters around the world, such as Iraq and Afghanistan, and that multiple deployments have increased stress on all military families, "but even more on those with EFMs." Based on interviews with Marine families stationed at Quantico, Camp Lejeune and Camp Pendleton, the report found:
navigating the disability services system requires "relentless hard work" and must be restarted anew every time the family is redeployed. For some families, "it can be an overwhelming prospect and can be so time-consuming that it becomes impossible for the spouse of an active-duty Marine to work outside the home"
a lack of health care specialists near installations, difficulty obtaining timely referrals and long trips to medical specialists
frequent moves to new school systems lead to substantial gaps in special education and therapeutic services
lack of Medicaid portability across states. "Each time the family moves, they have to start over on a Medicaid waiver waiting list and often do not live in one place long enough to qualify"
the loss of disability-related services covered under the DoDE's Tricare program when members retire from active duty
DoD Releases Study on Availability of Education Services for Military Dependents
WASHINGTON, DC (Oct. 5, 2011) -- The Department of Defense has released a study on the availability of education services for military dependents with autism that was conducted by researchers at The Ohio State University.
The Executive Summary is here The Full Report is available here
Autism Speaks Reaches Out to Military Families at 2011 Seabee Days
PORT HUENEME, CA (July 23, 2011) – Autism Speaks was on hand for the 2011 Seabee Days at Naval Base Ventura County (NBVC) Port Hueneme, greeting many of the 14,000 people who attended and urging their support for the Caring for Military Kids with Autism Act. The annual event celebrates the Seabees, the U.S. Navy's construction battalions, for their many decades of service to the nation. Pam Eisenberg, Autism Speaks walk & event director for Southern California, handed out flyers and provided information about the bill to servicemembers whose families deal with autism, such as Maigan Spears (left,) a construction mechanic, who attended the event with friend Tony, a fellow construction mechanic.
The bill (HR.2288,) sponsored by Reps. John Larsen (CT-1) and Walter Jones (NC-3) would amend the TRICARE medical benefits program to assure all military families, regardless of whether they are on active duty or retired, receive necessary autism treatments.
Autism Speaks Lauds Congressmen Larson, Jones on Introduction of 'Caring for Military Kids with Autism Act'
NEW YORK, N.Y. (June 22, 2011) – Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded Congressmen John Larson (CT-1) and Walter Jones (NC-3) for introducing bipartisan legislation that would assure military families receive necessary therapies for dependents who have autism. Read more.
Military-Related Federal Bill Endorsements:
Autism Speaks is currently endorsing:
Caring for Military Kids with Autism Act (HR.2288) Sponsored by Reps. John Larson (CT-1) and Walter Jones (NC-3,) the bipartisan bill would assure military families receive necessary autism therapy treatments under the TRICARE program. Read more....
VIDEO: Senator Gillibrand works to require TRICARE to cover full costs of proven-effective autism therapies to bring relief to military families struggling with the high costs of autism.
Helpful Links:
HR.2288--The Caring for Military Kids With Autism Act
Many military families are impacted by autism. Based on current prevalence rates, as many as 12,000 children in the military families (active duty, reserve and guard) may have autism. These families are substantially affected by the financial and emotional costs of raising a child with autism.
s 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.”
