Caring for Military Kids with Autism Act

Friends,

I just received a call from Representatives John Larson and Mike Doyle, the original cosponsors of CMKAA. The Senate version passed this evening as part of the National Defense Authorization Act (NDAA)!!! The amendment was approved 66-29.
The measure must still clear ‘conference committee’ – that is where legislation that has passed on both sides of Congress is determined agreeable in its nature and language.
Once this is secured, and I am assured MANY Members of Congress are committed to seeing this through, The President will sign the NDAA into law with our amendment included.
THANK YOU to all who worked so hard to see this through, and especially the families who stood up to be heard. Bless us all.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon, 1BN 102IN(MTN), CTARNG

Mother of two beautiful babes – one with autism.

Owner, author of Stimcity.org…

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Caring for Military Kids with Autism Act

From AutismVotes:

The Senate is about to vote on an amendment to the 2013 Defense bill that will greatly improve access to proven autism treatments for our military families. Sponsored by Senator Kirsten Gillibrand of New York, the amendment will assure all military families, regardless of their duty status, have access to behavioral therapies, such as applied behavior analysis (ABA), under the military healthcare program TRICARE. Existing ABA benefits are limited and often fall short of minimum standards and prescribed levels of care placing an undue financial strain on many military families. Further, military members also face the loss of those benefits when they leave active duty, even as a result of being wounded in action. Senator Gillibrand’s amendment would end those inequities and align TRICARE policy with best practices providing the medical care our military families have earned and deserve; a similar measure has already passed the House…

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Shoulder to Shoulder on Veterans Day

On Veterans Day, I take several moments throughout the day to give mental focus to what this day represents.  Not only what it means to me personally – as a military spouse, as a proud American, as a mother of a future generation – but I take great reflection in the details of what it means to be a veteran.  Of what it means for my husband to be a veteran.

On the grander scale of Veterans Day, there are celebrations, ceremonies and media attention spread across this great nation and around the world today.  Friends and family on facebook taking the time to say “Thank you” to the military families they know.  Many still confuse Veterans Day with Memorial Day, the former honoring all living veterans while the latter observes the ultimate sacrifice of those who died as a result of their service during conflict.

There are so many thoughts I have throughout these times of remembrance and honor.  From the perspective of a military spouse, the wife of a career infantry grunt, I am humbled by our military men and women.

First, I thank God for bringing my husband home to me every time his boots hit the ground, whether worlds away on a battlefield or an hour away responding to a hurricane.  I have only survived these missions on faith that God will provide and deliver my Love to me once again.

I cannot adequately express my gratitude for my husband’s service but I try to whenever possible, and my sincere hope is that I set the example for his children to do the same.  That they may grow up knowing that Daddy devoted his entire life to our country – for better or for worse – he has answered every call to duty.  I thank him for everything he has sacrificed, endured, witnessed and lost in his more than 26 years in the army.  I am proud of his accomplishments, his rise through the ranks, and his commitment to his fellow soldiers.

How many of us can say that we literally offered up years of our lives at a time for our fellow citizens?  How many of us have spent freezing cold, sleepless nights in a stone bunker covered in a week’s worth of dirt and mud, occasionally nodding off to the sounds of gunfire echoing through the mountains?

How many of us have carried a dead or dying coworker down a mountain in the rain?  Only to then be unable to attend the funeral because you are still worlds away climbing back up that mountain in the darkness?

How many of us have witnessed the most horrifying war has to offer?  How many of us take a moment to entertain what that even means?  Because I can tell you, hearing the details secondhand is impactful enough.  Imagine being the soldier who lived every second of war.  Imagine the smells that surround the soldier – death, burning garbage, human waste, generator fumes.  Imagine the sounds that seem to never stop – gunfire and mortars, helicopters, armored trucks, and the screaming.  Imagine how a soldier’s body feels at the end of a week-long mission out in the mountains of Afghanistan.  Broken.  Cold.  Mental exhaustion that most of us will never know.

I have only heard the details of war indirectly, but I lay shoulder to shoulder with the result.  With honor and duty, therein also lies the darkness of man.

So thank that veteran.  Tell him or her that you may never understand their sacrifices, but you are damn grateful they serve us all.

No matter our differences on war and politics, be sure to take the time to tell our veterans, “I stand shoulder to shoulder with you.”

Thank you, William.  These words will never be enough, but know that my heart picks up the slack.

Love,

Rachel


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


SASC Staff Email

Happy Memorial Day Weekend!

Here are all the email addresses I have for SASC staffers,

plus HASC Chairman Buck McKeon.

Email away, folks!

Remember, be respectful, be positive, and share your story!
Cheers,
Rachel

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