Tag Archives: caring for military kids with autism act

DoD Reports to Congress with Mystifying Excuses for Failing to Comply with Legislation

“Pilot Program” Held Paralyzed by

Pentagon’s Divisive Concern for Military Autistic Children

Autism Speaks obtained a letter from DoD to leaders in Congress dated May 7, 2013, expressing the several mystifying factors that make it impossible for autism therapies to be implemented.  CMKAA, a federal law, was passed in 2012 and modified in Committee as a Pilot Program to be implemented no later than April 2, 2013.  Families are still waiting.

It sounds like the DoD is truly worried for our military families with autism.  If they start treating some of our kids, just think about what would happen:

First, there are too many kids to treat and not enough providers.  Can you imagine? Even if one more child with autism received the treatment he or she needs while we figure this mess out?  Well, that would be tragic.  And I think promoting career advancement in the field of BCBAs is a stupid idea, too.  I’m with you, DoD.

Next, apparently due to a lack of mobile diagnostic capability, the military kids who have autism are too spread out to find them all.  So why start the search?  We might actually find them.  If we find them, we may have to treat them. Shhhhhh.  Next thing we will find at our doorsteps are ghillie suits for our autistic kids with a note from the DoD that says, “Put this ghillie suit on your kid. Ghillie suits cure autism. And here’s a map to the nearest pond.”

Cannot treat what you cannot see.

Cannot treat what you cannot see.

If that doesn’t work, at some point the DoD will just have to start to acknowledge the existence of our thousands of autistic kids and that the treatments proven to work um, actually do.  Which means, DoD, you will have to start treating them.

I know, DoD, if you start treating them, there will only be more and more to treat because autism is increasing in prevalence.  So you’re right, DoD… let’s just pretend this all never happened.  Coffee, anyone?

DoD letter

[The petition to Congress to actually MAKE autism treatments available to all military dependent children is still active and every signature sends a letter directly to every Armed Services Member urging them to take action. You will find the petition HERE. Sign it. SHARE it. Thank you.]

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TRICARE Publishes Interim ABA Benefit

Families Can Begin Submitting Claims for ABA During Interim Benefit Period

August 10, 2012

If you are TRICARE eligible, read the entire TRICARE manual change, it includes diagnostic codes and circumstances under which ABA will be reimbursed during this interim period. This change is retroactive, eligible claims dating back to March 5, 2010, may be reimbursed under this action.
 
If you are not sure whether you qualify, call your TRICARE regional contractor.
ALL TRICARE telephone contact numbers can be found HERE.
 
Refer to the TRICARE manual change, be patient and persistent in speaking with TRICARE claims personnel, they may not yet be aware. If you familiarize yourself with the information in the manual, you should be able to get the answers you need in regards to your own coverage.
 
TRICARE has a total of 60 days from the date of judgement (July 26, 2012) to appeal. Advocates and organizations are working hard to pursuade DoD/TRICARE not to appeal this landmark case.
 
The TRICARE interim benefit manual to cover ABA can be found HERE.

Senate Hearing on Medical Necessity of ABA

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.

[vii] United States District Court testimony in dispute of Hayes report regarding ABA.


Open Letter to Armed Services Committee Members on Memorial Day

Happy Memorial Day Weekend, Ladies and Gentlemen of the Armed Services Committee Offices.

My name is Rachel Kenyon. I am a proud and battle-tested Army wife and mom of two beautiful babes, one with autism.

Currently, TRICARE military healthcare provides less than half the recommended treatments for autism, and only to children of active duty service members.

Service members who retire after more than twenty years and Wounded Warriors forced to medically retire are stripped of what little treatment TRICARE allows via the Extended Care Health Option (ECHO).

On Thursday, May 17, 2012, Congressman John Larson took to the House floor armed with embarrassingly large photos of our little family and made the case for Caring for Military Kids with Autism Act to be included as an amendment to the FY2013 NDAA. It worked, because for Mr. Larson, this had become personal. It worked because Rep. Tom Rooney had the courage to walk up to Chairman Buck McKeon and tell him it was personal. Mr. Rooney has two nephews with autism. Mr. McKeon did the right thing, because now he understood, it was personal. The amendment passed as part of the NDAA in the House.

Senator Gillibrand attempted this past week to do the same in the Senate Armed Services Committee markup session. The amendment was rejected.

I contact you today because this fight is so very personal for so many of us serving our country each day. Not only do I want my husband to feel that his more than 25 years of service warrant the medical care our daughter with autism needs, but I want my daughter to have the security of being able to access the tools that can give her a richer, more meaningful life.

It’s personal because I now hold 23,000 other children in my heart, and more than that many parents who serve our country. I love them as I love my own. I want them to feel proud of their country’s service to them in return. I want them to sleep at night, knowing that though autism may have knocked on their door, they can live their lives to the fullest with the care they need and deserve. It’s personal.

I know once you read the petition comments from your constituents, both military and civilian, you all will choose to do the right thing. To take this fight personally. To share with your fellow staffers and your Senators and Representatives that our families are proud. That our children are worthy. That if just one military child was denied the cancer treatments he or she needed, we would not be wasting time with emails and petitions. A true American who hears that 23,000 military children are being denied the medical standard of care for autism takes that personally. Well, for real American patriots, it is so very personal.

I appreciate your time and I wish you all a fun, relaxing Memorial Weekend in remembrance of those who have made the ultimate sacrifice.

Our little family will be spending another weekend living with autism in our house and struggling to understand why we have to fight this battle, too.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon

Mother of two beautiful babes – one with autism.

http://www.change.org/petitions/congress-make-recommended-autism-treatment-available-to-all-military-children


Get Up On That Wagon

“Your lazy butts are in this too. So get up on that wagon. We’re goin’ up north to put the word to the streets.” ~ Curtis, “The Blues Brothers” (1980)

It might seem like a strange parallel to draw, but The Blues Brothers movie has some good messaging that is actually a bit relevant to our cause, my friends.

Whether or not you are a fan like me, the story of one man seeking redemption by doing good for others is a likeable storyline no matter who you are.  As humans, no matter how selfish we sometimes can be, we yearn to connect with others and make the world a better place in whatever moments of opportunity that present themselves.

Here’s our chance.

For me personally, I attest that I am no saint.  I make my share of mistakes and bad decisions.  But I love hard, and I want to do good by others.

So I share my story.  I share my family’s story.  I beat down doors, break down walls, and I talk.  I write.  I sometimes harass and harangue.  But my intentions are honest and I put myself out there and hope to be heard.  By some crazy twist of fate in this life, it seems to be working.

I think you can make it work, too.

I think your story is just as powerful.  I think what you have to say is just as important.

I think you can change lives in ways you never imagined.

There are a handful of public servants standing in positions to help us.  They are men and women just like you and me.  They bleed like you and me.  They love like you and me.  They stumble around this earth like you and me trying to find their way.  They need to KNOW you to want to help you.  If they do not know you, if they do not know what you need, they simply cannot help you.

So talk to them.  Call them.  Email them.  Send an open letter to them via their hometown newspaper.  Reach out to them so that they KNOW you.  So that they are moved by your story to want to help you.

I have no advanced degrees, there is nothing that makes me special.  I am unemployed and deeply in debt.  But I have been to The White House, I have spoken before Congress, and I have had meaningful conversations with Senators and Representatives on the state and federal stage.  Just sharing my story.  Sharing what is important to my family.

I can tell you that I know how we can win.  I heard it straight from a Senator’s mouth.  We need the Senate Armed Services Committee (SASC) Members to know all of our stories.  We need them to be thinking about our families when their heads hit the pillows at night, and when they put their skivvies on each morning.  They need to be consumed with the injustice of our children not getting the medical treatments they need for autism.

So get up on the wagon and put the word to the streets.

No excuses.

[Ed note: You have so many tools at your disposal to share your stories.  You can sign and share the petition at Change.org – remember, every signature is sent to every Member of the SASC.  You can call their offices and email them, too.  You can reach out to local newspapers and TV stations, especially in Michigan and Arizona where SASC Chairman Levin and Ranking Member Senator McCain reside.  You can also post on the facebook pages of local media, too.  Friends, I have been doing all of this myself and I no longer can do it alone.  I still have laundry and vacuuming and ‘cooking’ to take care of each day.  Pushing the boulder up the hill is too much for me to manage alone.  But together, we can move an entire mountain!]


When Stars Align

Me: “I really don’t feel up to going tonight.”

SGM: “Me either. But hell, we have a babysitter for once.”

Me: “Good point.”

–        That was the evening last February, 2011, headed out the door with SGM to meet with Congressman John Larson and other families with autism.

§

I didn’t want to.  I had really, truly avoided this fight for more than a year after RM’s autism diagnosis.  But my name was out there and the woman was persistent.  She wanted a face for military families.  Eventually, she just didn’t take no for an answer.  How ironic.

Shannon Knall, the Autism Speaks Advocacy Chair in Connecticut, had made up her mind that the TRICARE nightmare for military families with autism needed a voice.  She had planned events with Congressmen Joe Courtney and Chris Murphy to talk with all families living with autism and she had dragged me along kicking and screaming to speak on behalf of those who serve.  Ok, so maybe I only kicked and screamed at first.

It came rather naturally for me.  Call it what you will – loud and obnoxious or passionate and articulate – but I didn’t seem to have much trouble speaking up.  I made great connections at these two events and along the way, realized I could do something about this.

After working for a very long time to get Congressman John Larson to come to the table, Shannon called me to say the time had come.  SGM, now home from Afghanistan, would join me at a gathering at a family home in West Hartford, Connecticut, to talk about autism.

Something truly amazing happened that evening.  Mr. Larson hadn’t known how many military children had autism.  He hadn’t known how bad the TRICARE/ECHO problem was.  He simply hadn’t known.

In a single conversation, the game had changed dramatically.

It was only a matter of a couple of days before I received that first phone call from his office.  Was I willing to share more?  Hello, have you met me??  “The Congressman wants to do a bill.”  WHAT?!?!?

Fast forward to yesterday.  With HR2288 CMKAA still a viable option, Congressman Larson went for a huge play and sought an amendment to the FY2013 National Defense Authorization Act (NDAA – the defense budget itself).  This would mean that autism treatments would be included in TRICARE basic entitlements and be passed as part of the NDAA going forward.  After an agreement had been reached the day before with the House Armed Services Committee (HASC), then reneged at midnight, Mr. Larson took to the US House floor to take one last shot at it.  Armed with embarrassingly large photos of our little family, he spoke so passionately about doing the right thing.  He spoke about the struggles our military families face with a child on the spectrum, without the care they need.

Mr. Larson’s efforts were snubbed by ‘procedural’ House rules.  He would have to try another avenue, but it wasn’t going to happen this day.  Ok, I thought.  Sobbing uncontrollably, I eventually pulled myself together and realized that regardless, this was HUGE.  We had brought the discussion to the floor of the House and we were going to move forward with CMKAA.  I kept my faith.

While cleaning up around my own house floor, I left C-SPAN on in the background.  At around 3:30pm, HASC Chairman Buck McKeon took to the floor to begin the debate on the NDAA.  Suddenly, I heard the words “TRICARE” and “ABA”.  My heart nearly exploded.  I was frantically listening and rewinding and listening and rewinding.  DEAR GOD, I DO NOT SPEAK CONGRESS – SOMEBODY SAY SOMETHING I UNDERSTAND!!!

I called my fellow Warrior Mama, Karen Driscoll, and screamed into the phone, “Karen! You have to call Stuart and find out what just happened! I think we did it, Honey! I THINK WE DID IT!!!”  She was just as stunned as I was and told me she would call Stuart Spielman of Autism Speaks Government Relations immediately and find out what was going on.  Stuart had been working tirelessly for the last year to make this dream come true.

In the meantime, I was just shaking violently in my living room desperate to know wtf just happened.  Literally, rocking back and forth.

The phone rings.  It’s a DC number.  OH. MY. GOD.  Here it comes.

Congressman Larson: “Rachel.  Rachel.  We did it.”

I won’t go into further detail of how I was simultaneously sobbing, hyperventilating and screaming on the phone with my United States Congressman.  I am sure you can imagine.

He managed to continue to speak above my gasping for air to tell me that it came down to Representative Tom Rooney walking across the hall to speak to Chairman McKeon.  “Sir, this is personal.”  Rooney had related his own experience with a military family with a child on the spectrum.

And that, my friends, is the best example of how much it matters when we speak up.

So many dozens of stars did indeed align over the last two years.  Too many to recount here in this one post, just as there are too many people on this earth who played a role in moving those stars into place.

We still have work to do.  We must go through the motions of securing this amendment through the Senate when they vote on the NDAA.  But I am confident we have covered all the bases and I am assured we can make that happen.

It will take a few years to implement these changes to TRICARE once we have finished this legislative process.  But it will happen.  It is a huge leap forward for all children with disabilities.  It literally paves the way for bigger and better things in the care of our kids.  Our work is not done, but we can all be so proud today.

“Thank you” will never be enough, and I cannot possibly list every individual I must thank in one post, but for beginners:

Thank you to Karen Driscoll, Marine Corps wife, mother of three, and my mentor.

Thank you to the many more military parents who have been in this battle long before I came on the scene.  Never giving up.

Thank you to Jeremy Hilton, Military Spouse of the Year, for his dedication to helping all military families with special needs.

Thank you to my dear fellow military spouse, Jeneil, and her faith and family.  Mahi, you inspire me to continue to always believe He is near.

Thank you to Jess at Diary of a Mom.  My friend, my inspiration to keep moving forward.

Thank you to Bob and Suzanne Wright of Autism Speaks.  It could not have come together without your support and your efforts to enlighten the world.

Thank you to the entire team at Autism Speaks and Autism Votes – namely Stuart, Rick, Ali, Judith, Nora, Mark, Dana and dozens more.  You all came together and learned a new piece of the puzzle and ran with it to make the world a better place.

Thank you to Congressman John Larson and his staff – namely Dave and Eva.  I love you for your service to The People.

Thank you to Representative Tom Rooney for speaking up.

Thank you to Chairman McKeon for doing the right thing.

Thank you to Mike Strautmanis and Brad Cooper for listening.  I’m still waiting to hear about those tiny doors, Mike.

Thank you to my family at AMFAS and Nicholas who continued to encourage me.

Thank you to my friends and family and my blogging sisters and brothers.  You rocked it out, people.  You ROCKED. IT. OUT.

Thank you to everyone I spammed with blog posts, petitions, emails, tweets, and general pleas for help.  You are all heroes. You are all ROCK STARS.

Thank you to Shannon.  I didn’t want to, but you didn’t give a crap about what I wanted ;0)

Cheers.

[Ed note: Oh yeah, we really are not done yet – keep signing and sharing the petition at Change.org – we must secure the Senate version of the CMKAA amendment to NDAA! Every time a signature is received, the petition and notification are sent directly to the offices of the Senate Armed Services Committee leadership. THANK YOU!]


Wounded Warriors Denied Autism Treatments for Their Children

To help win this battle,

sign the petition at Change.org.


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