Home > Government Relations > Military Families Tell Their Stories at Congressional Briefing

Military Families Tell Their Stories at Congressional Briefing

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.


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.

  1. david whitt
    February 1, 2012 at 10:54 am

    New cutting edge research is linking Autism to exposure to Indoor Mold. Google; Autism and Indoor Mold Exposure.

  2. February 1, 2012 at 12:42 pm

    If the United States Government stepped up to the plate and did the right thing on this issue, my brother, the husband of my sister-in-law, and the father of my wonderful, special needs nephews, Jacob and Alton, would not be going back to Afghanistan. It should not be a decision of continuing service to your country and having coverage for your children, or retiring from the military and then seeing your children being kicked to the curb when it comes to continued coverage for your them. This is, in my opinion, a form of extortion being used against our service members. The issue of continued coverage needs to be out of the equation when it comes to a service member’s decision of continuing their service and sacrifice to this country, or leaving the service and going it alone when it comes to the medical needs of their children. The fact that they signed the contract, and volunteered to serve in any branch of the military should be payment enough for continued coverage for themselves and their families. I do not like the fact one bit that my brother is going back to Afghanistan and putting his life in danger based upon the fact that his children need further therapy for their Autism.

  3. Jeremy Chesney
    February 1, 2012 at 1:55 pm

    I am glad to see the fight for autism continue, but what about those of us who have children with autism, and are not in the military?

  4. Carrie
    February 1, 2012 at 1:57 pm

    Praying for a miracle for this bill to pass soon! We are about to lose benefits for my daughter – husband is retiring. My daughter has made such progress with ABA therapy, to have it just cut off – well as you may imagine – I’m worried about her future without it.

  5. Tami
    February 1, 2012 at 5:36 pm

    How is this even an issue? Are we not charged with “providing” for the needs of those that served as well as their families, especially when they have been injured in the line of duty? Yet congress can have automatic payraises and anyone elected gets the retirement pay for life? FRUSTRATING!!!!!!!!!!!!!!!!!!!!

  6. Millie
    February 4, 2012 at 3:04 pm

    My story is even more sad. My ex-husband retired, my son diagnosed in 7th. grade although we had PDD-NOS as a diagnosis since he was in grade school, not once did we get approved for ABA therapy. No on the neurologist. Now my husband divorced me because he needed out he said, to put it nicely. There is an incapacitation policy in the military, we applied two 1/2 years ago, they lost our application, then they denied us because supposedly, since my son is 23 y/o now, my ex doesn’t support him 50%, he is not entitled to be incapacitated and can not have military benefits til the age of 65. When we were filling out paperwork they told us to include everything I spend on him. Now I get alimony, out of work , (no one will hire because of my work history), due to being there for my son trying to learn therapy ways back in the 90’s. At no time did they inform us at DFAS, that they had a law put in that if the military member wasn’t providing 50% of income Alex could not be incapacitated. I asked my ex to fight it he said no, end of discussion. my son is left out in the cold, the state refuses to accept medicaid or disability insurance. He works a part time, he can’t afford ins. Neither of us have any insurance, I am going to school part time, to try to get ahead. What my ex- did is inexcusable, what the military did was worse. The military repeats, we take care of our military families.??? How can you dump a person, who will not be able to take care of themselves, out in the cold! When we the family, were always there to support the military member. How can the govt. and the military kick someone out just like that. Where am I supposed to get the money. I have cleaned out my IRAS, my life savings and I am left to carry the load. HOW CAN THIS BE FAIR????????? Will someone please give me an answer?? I feel so betrayed!! Can someone help me???

    • Lisa
      February 8, 2012 at 3:01 pm

      I am a single mother with an autisic son. I can offer you some advice and I hope it will work. However, I think I should warn you that it is time consuming. It took me nearly four years to get any kind of benefits for my son. First keep applying for Medicad. You will have to get doctors to examine and then produce written documents stating that your child is autisic. With written proof and a LOT of pushing, they will have to listen. If that doesn’t work call the press. Good luck.

  7. February 4, 2012 at 5:29 pm

    My husband is retired Air force, we have an autistic daughter in 9th grade, being retired military has some benefits but not for their autistic children. When you retire hopefully you’re able to retire to a community where you can find good special ed. support. Many Middle-High Schools do not have the appropriate services that would benefit our kids. Most parents including myself have to battle in IEP’s with people that act as though they know what’s best but it comes down to what the Team is willing, financially willing to Provide. I am continuously frustrated with no support medically or educationally for my child. In school our kids are placed in unchallenging environments such as SDC, or they fall through the cracks of regular education. Mainstream is overcrowded, the teachers do not have a special background and are not trained in autism, most are incapable of understanding the disability and do not have the desire to learn. Good luck to you future retirees.

  8. February 8, 2012 at 4:01 am

    I am glad that I detected this website , just the right information that I was looking for! .

  9. February 8, 2012 at 6:02 pm

    Wow! I am glad to read that there is a bill before congress that addresses medical care for military dependents after the military member retires. We are less than two years from retirement. Our son, Darrell (6), was diagnosed in 2009 with Autism. it is a fear and of great concern to us. Thank GOD!

  10. February 12, 2012 at 9:33 am

    Hi Guys thank you for all information and good luck be continued

  1. February 7, 2012 at 10:15 am

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