Tag Archives: hr 2288
Washington, D.C. – Senator Jim Webb, Chairman of the Subcommittee on Military Personnel, moderated a hearing June 21st to examine the Department of Defense (DoD) TRICARE classification that Applied Behavior Analysis (ABA) is an educational intervention, not medically necessary treatment of autism, a complex neurological disorder. Because of this distinction, autism is the only medical condition segregated by DoD under the Extended Care Health Option (ECHO) which limits treatment to less than half what is recommend by the medical community for best outcome. Dependents of retirees including Wounded Warriors forced to medically retire are denied autism benefits entirely. More than 23,500 military dependent children have Autism Spectrum Disorder (ASD).[i] Currently, only 3,783 active duty dependents have accessed autism benefits under ECHO.[ii]
Chairman Webb opened with strong support for military families with special needs. “Ensuring that our uniformed personnel and their families receive first-rate healthcare is one of the critical elements in what I view as the military’s moral contract with those who volunteer to serve our nation.”
In April, the Office of Personnel Management (OPM) which oversees the Federal Employees Health Benefits (FEHB) Program released the following[iii]: “Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy.” FEHB covers over 8 million Federal employees, retirees and their family members. Jeremy Hilton, father of a child with autism and other special needs, Navy veteran and 2012 Military Spouse of the Year, testified at the hearing on behalf of military families. “We now stand at a point where, without action by the Congress, we will soon see federal workers provided medically prescribed autism therapy for their children while military families receive either an inferior level of care or, as in the case of the retired veteran’s child, receive no care.”
Dr. Vera Tait, Associate Executive Director of the American Academy of Pediatrics (AAP), testified[iv] to the effectiveness of ABA-based interventions as, “well-documented through a long history of research in university and community settings.” Dr. Tait hailed ABA in addressing specific medical issues that must be dealt with through behavioral approach such as self-injurious behavior, feeding issues and malnutrition. “AAP has endorsed the use of ABA treatments when determined appropriate by physicians within a medical home.”
Dr. Geraldine Dawson, Chief Science Officer for Autism Speaks, followed up with added significant medical basis for ABA: “[ABA is] prescribed by a physician, delivered by a licensed clinical psychologist, or Board Certified Behavior Analyst, not necessarily a special educator, and requires many hours of intensive intervention not accommodated within an educational program.” Dr. Dawson also testified to ABA’s impact on brain development and its success in changing the pattern of brain activity in autistic children to normalize them over time.[v]
So why is this issue still so problematic?
The DoD maintains their ground regarding ABA as having insufficient scientific evidence by using a dated report[vi] by Hayes Inc., an online database that provides health technology assessments for a fee. The ABA ratings report issued by Hayes to the DoD contains the following disclaimer: “This report is intended to provide research assistance and general information only. It is not intended to be used as the sole basis for determining coverage policy.”[vii] When asked by Committee Members how long it would take DoD to review the current evidence-based data widely accepted by the medical community, Dr. Karen Guice, Principal Deputy Assistant Secretary of Defense for Health Affairs Staff, replied, “It could take us a very long time, six months.”
Sen. Gillibrand asserted that six months was too long. “The fact that these therapies [ABA] actually work is the greatest hope that we have. So we shouldn’t be denying them to any child, certainly not the child of a military family and certainly not the child of a wounded warrior.” Senator Richard Blumenthal (D-CT) agreed, “The hopes offered by ABA are impressive.”
Senator Gillibrand asked Dr. Guice what the Committee could do legislatively to aid the DoD in expediting a review of current evidence but Guice declined the offer. Dr. Dawson concluded her testimony, “This is not a matter for further study. Action is needed to provide the quality of care our military families deserve and have earned.”
In May, the Caring for Military Kids with Autism Act was passed in the House as an amendment to the FY2013 National Defense Authorization Act with overwhelming bipartisan support of more than 70 cosponsors. Senator Gillibrand is spearheading the effort to pass a similar amendment in the Senate this summer.
[i] According to DoD report dated 12 September 2011.
[ii] Testimony submitted by Dr. Karen Guice, Principal Deputy Assistant Secretary of Defense for Health Affairs Staff http://issuu.com/jeremyhilton/docs/tricare_statement_for_the_record_21_june_2012?mode=window&backgroundColor=%23222222
[vi] Don Woody, Chief of TRICARE Appeals, 29 October 2010. Appeal letter to retiree family stating TRICARE denial of ABA treatment as medically necessary using the Hayes Rating.
To help win this battle,
It’s been a little over two years since RM was diagnosed with autism during SGM’s last deployment to Afghanistan. Still, we struggle to understand what that means to us as a family, how we process that reality on a daily basis and how to move forward in hopes of a bright future for all four of us.
My work on HR2288 – Caring for Military Kids with Autism Act – is one way that I have personally dealt with my daughter’s autism. Because as parents of autism know, change and progress are sometimes so painfully slow, it is helpful to feel like you are accomplishing something, anything.
But the ebb and flow of progress on federal legislation is often more painful. The highs and lows sometimes too much to bear. As I am sure many have noticed, I have not been writing here on StimCity for quite some time. I simply have not had the energy to spare among the Awareness events and working on CMKAA. Not a square to spare.
But here I am today. The urge to write something, anything. So I decided to tell you about the Crazy I still have within me. The belief that CMKAA will happen. The fire in my belly that tells me no matter what it takes, we will see our military families get what they deserve for their children with autism. I simply cannot take No for an answer. But it’s going to take so much more work. So much more energy and a little bit more Crazy. I will have to find another square to spare. You will, too.
Have you called your Member of Congress yet? Because I simply do not buy that everyone who needs or believes in CMKAA has done so. Have you one-clicked your support online? I own the cmkaa.org site, so I know exactly how many people have been there and how many have not.
Are you on facebook? Then why haven’t you looked up your US Senators and US Representatives and ‘Liked’ them yet? Why does Beyoncé (and I’m talking about the giant metal chicken) have 38,292 ‘Likes’ on facebook, and the Chairman of the House Armed Services Committee have only 3,719? That guy is the one you need to be following whether you’re a military family living with autism or not.
And what about Twitter? If you’re following the other Beyoncé on Twitter, you have time to send a tweet to Congress while you’re catching up on the latest E! News. Most Members of Congress and elected officials in government now have a Twitter account. Easy access, folks. But one person cannot tweet the world into a better place alone. Besides, if I am the only one spamming them about this stuff, eventually they will all block me. I’ve already been blocked from certain legislators’ facebook pages, though I won’t name names. (Rhymes with NoBeyondo.) Go ahead and spare a square, please.
Be brave, be Crazy and know that what you have to say is important. You just might find yourself hugging the Deputy Assistant to President Obama or getting a tweet back from a coproducer on The Daily Show. Or you can be really Crazy like me and have a custom fleece blanket of an Epic Fail poster sent to Jon Stewart himself. Oh yes I did. $39.95 towards a good cause.
Stephen Colbert just reported on The Colbert Report (4-11-12) about the sacrifices military families are making. Autism was not on the list, though, so there’s our opening. Watch the clip and leave a comment. If you think no one from these shows reads the comments, then you really are crazy. We need to be creative, my friends. Start thinking outside of the box and get our message out there.
I’m not making this shit up, people. There are literally a handful of folks that are working on this bill and none are doing it as a full-time, paying gig. It’s an email here or there in between changing diapers on a five-year-old. It’s a phone call to a legislator after speech therapy, before the appointment with neurology, while trying not to drop the phone into the boiling water because it’s Raman Night for the third time this week.
You have nothing to lose and everything to gain. There are cosponsors to CMKAA that are the result of a single phone call from a military spouse. In fact, if I recall, the bill itself is the result of one military warrior mom speaking up to her Congressman and telling him like it is.
Go ahead. You can do this. Believe in yourself as a powerful voice with something important to say and you can move mountains. Or just be Bat Shit Crazy like me and get the word out in your own style. However you choose to get involved, three minutes of your precious time could literally make all the difference.
Spare that square for military families with autism. We deal with enough poop as it is.
New York – On Saturday, March 31, Autism Speaks honored military families living with autism aboard the USS Intrepid Sea, Air and Space Museum. My head is still spinning and I am still processing the HOPE I stumbled upon that day. I have so much to tell you and I want to share this HOPE with you.
Before I go any further, if you don’t know me, please read about my journey as a Late Bloomer. I feel it is so important that people understand that I have done nothing extraordinary in the last two years. I simply spoke up and reached out to people who can help – people who should help – and I have had high expectations of them. I also learned “No” is an unacceptable answer, especially from leaders in government that we elect and contribute to their salaries. I have learned that being positive and confident about the right thing to do is contagious. Even politicians want better expected of them. Anger and bitterness do not get the job done. More importantly than anything else, I have learned to listen, too. In reciprocal communication with legislators, other military families, military leadership and fellow members of the autism community, I have become a better person and learned so much about working as a team. It has allowed me to participate in opportunities that otherwise would have been far out of my reach as that Late Bloomer.
Aboard Intrepid on Saturday, I had the opportunity to speak with Mr. Michael Strautmanis, Deputy Assistant to President Obama and father to an autistic child. He was sincere and he was listening. I am fairly certain that no less than four times I told him his presence there that day meant HOPE to our military families. I am pretty sure I was close to crossing a line when I winked at him saying, “Now you go back to DC, Sir, and tell your boss we need this.”
I had several more conversations with Congressman John Larson [D-CT], Sponsor of HR.2288, as well as Bob and Suzanne Wright, cofounders of Autism Speaks. These individuals are serious, people. This is a no-more-messing-around situation. The new CDC numbers of 1:88 are not new to the military but they are certainly helping to wake everyone else up. The unique struggles our military families face, admittedly, are so very complicated. It isn’t until recently that our stories have been brought to light and truly understood. It’s hard enough for us to keep up with the acronyms, imagine these civilians getting a crash course in military lingo while also hearing about the seven circles of hell we navigate through just to get to ECHO. We must keep sharing our stories and spelling out those acronyms.
From left to right: President of Autism Speaks Mark Roithmayr, Deputy Assistant to President Obama Michael Strautmanis, Military Spouse Rachel Kenyon, Congressman John Larson [D-CT], retired NASA Astronaut Jeffrey Alan Hoffman, Cofounders of Autism Speaks Bob and Suzanne Wright, and Intrepid Museum President Susan Marenoff-Zausner.
(Photo courtesy of Autism Speaks and Photo-NYC.com)
The presentation aboard Intrepid for military families was emceed by Bob Woodruff of ABC News, a hearty supporter of veterans and Wounded Warriors. Mr. Strautmanis, Congressman Larson and Bob and Suzanne Wright spoke of the undeniable responsibility our nation has to care for our troops and their families. Most notably, Mr. Wright spoke of personally calling ECHO to get answers. He spoke of the frustration when administration at ECHO told him they were unaware of families having trouble accessing autism care. This man had taken the time to walk in my shoes. That got my attention and earned my respect. Marine spouse and advocate Karen Driscoll shared a powerful video highlighting the personal toll on our military families who cannot access treatments. She also urged leaders to take this important message back with them to Washington, D.C., and implored them to take action. The heartbreak our military families live when denied the treatments our children with autism need and deserve was exuded by each speaker.
What I heard this day was a clear and united message to our military families. The cavalry is mounting up and on its way. But we must keep communicating. We must keep ourselves visible and hopeful. We must remain positive. Anger will get us nowhere. It has to be a team effort and victory will require teaming up with both sides of the political aisle and every side of the autism debate. It is not vaccine versus genetics here. It is not research versus outreach. With 1:88 there is room enough for everyone to sit at the table and work together.
For military families, right now is the time to act. We have the federal legislation in place and we have the momentum to get it passed. But we need unity and a collective voice speaking up and being heard or else we will fail this mission entirely. HR.2288 – Caring for Military Kids with Autism Act makes the recommended amount of medically prescribed autism treatments available to all military families. It is the help we need right now. We cannot wait any longer and we cannot wait for someone else to speak up on our behalf. We need to own it. We need to fix it.
I leave you with this well-known story:
There was a man that lived by the river. He heard a radio report that the river was going to rush up and flood the town. All the residents should evacuate their homes. But the man said, “I’m religious. I pray. God loves me. God will save me.” The waters rose up. A guy in a row boat came along and he shouted, “Hey, hey you! You in there. The town is flooding. Let me take you to safety.” But the man shouted back, “I’m religious. I pray. God loves me. God will save me.” A helicopter was hovering overhead. A guy with a megaphone shouted, “Hey you, you down there. The town is flooding. Let me drop this ladder and I’ll take you to safety.” But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety. Well, the man drowned. Standing at the gates of St. Peter, he demanded an audience with God. “Lord,” he said, “I’m a religious man, I pray. I thought you loved me. Why did this happen?” God said, “I sent you a radio report, a helicopter, and a guy in a rowboat. What the hell are you doing here?”
Intrepid is no rowboat, but you get the idea.
Get on it. Get involved. Contact your legislator NOW. Before we all miss the boat.
I’m over at the Autism Speaks Official Blog today talking about the complex issues facing access to autism care for military families and why HR2288 – Caring for Military Kids with Autism Act is so critical. April is coming and there are so many ways to get involved in spreading awareness whether blue lights on your house or simply starting a conversation with someone and sharing what autism means for you and your family.
“April is not only Autism Awareness Month, it’s the Month of the Military Child. As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not. I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing.”
For the entire article, please find me on Autism Speaks HERE.
And thank you for being a part of this journey with me!
[Click above image to see coverage of HR2288 on Andrea Mitchell Reports MSNBC]
TRICARE does not cover autism therapies. A separate arm of services called the Extended Care Health Option (ECHO) which is secondary to enrollment in the Exceptional Family Member Program (EFMP) does offer what amounts to an average of 11 hours of ABA therapy per week – far below the recommended 25-40 hours per week.
With HR2288 – the Caring for Military Kids with Autism Act, we are asking that TRICARE take autism therapies out of ECHO and place them as medically necessary as part of TRICARE standard – thus making these proven treatments available to all active duty and retiree dependents and removing the dollar cap on care.
ECHO is not available to retirees.
Wounded Warriors who are forced to retire due to injury or disease do not have access to autism services. According to TRICARE/DoD data, less than 10% of active duty families who do have access to ECHO are accessing autism treatments, yet none are receiving the recommended amount because of the dollar cap ($36,000 per year).
Also, families accessing autism therapies under ECHO are forced to choose between ECHO benefits in order to maximize autism therapies. For every dollar of ECHO benefits used towards other services, a dollar of ABA is essentially taken away. We seek to change that. Autism therapies should not have barriers to receive care, they should be equally accessible to the military family as would treatment for heart defects or a broken arm.
With the advocacy efforts of Autism Speaks, 29 states have now passed insurance reform to include autism therapies as medically necessary – we are seeking to do the same for our military families. This is not an issue of civilian versus military, it is an effort to level the playing field for ALL children with autism. This effort neither detracts from or argues the continued efforts to make proven treatments readily available to all. In fact, for TRICARE to step up with best-practice standard of care for autism treatment, they would be taking the opportunity to once again set the standard for medical care throughout the insurance industry.
Thank you to Peter Bell, Executive Vice President of Programs and Services for Autism Speaks, for his support! It is the hard work of everyone at Autism Speaks taking the charge to make this right, along with all of the tremendous work they do for families across the globe, that gives me hope.
And my absolute sincerest gratitude to Ms. Andrea Mitchell at MSNBC. Andrea was not only a gracious host, but she is personally committed to autism awareness for all of our families living with autism.
My thanks to Marvin, the lovely gentleman who drove me to and from the airport. And many thanks to the entire team at Andrea Mitchell Reports for welcoming me and my story and treating me with respect and kindness.
[Don’t forget! You can write your US Representative & US Senator as often as your little heart desires! Tell them to support HR2288 –> HERE <–! THANK YOU!]