Tag Archives: military retirement benefits

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.


The Briefing

I tried very hard to remain calm the days before the briefing.  My speech had been finished for weeks.  I felt confident that I had done all I could to promote the briefing and fill the room.  But I was still overwhelmed on the inside.  The stress was enormous, the pressure to do right by our military families was immense.  Just a few days before, I got pretty sick.  Beautiful fever blisters took up residence on my lower lip and chin making me terribly self-conscious.  The last ‘look’ I was going for at the briefing was ‘punching bag’.  But I realized pretty quickly that my words mattered so much more – and on that front, I was ready.

The room was full.  It was bursting at the seams kinda full.

There were so many families there!  YEAH!  That meant more to me personally than any legislative staffer that showed – and there were a few of those, too, which was good.  But I want to sincerely thank the families that attended.  No one understands more than I what it took for you to be there.  THANK YOU.  I want you to know we are devoting ourselves to making this happen for all of our families.  And your presence said so much to your fellow military families who could not attend.  Again –  THANK YOU.

We were set to go.  It was very well-organized and my sincerest thanks to Autism Speaks and the staffs of Congressman John Larson and Senator Kirsten Gillibrand who attended to every detail.

Stuart Spielman of Autism Speaks was the emcee, and he did a fabulous job.  Thank you, Stuart.  Rick Remington and the Communications team from Autism Speaks were phenomenal as well.  My sincerest gratitude to everyone who contributed to making this event possible.  (Thank you, Ali!)

Ok.  Now on to the good stuff.

Image Courtesy of Autism Speaks

Congressman John Larson [D-CT], my Congressman entered the room and took to the podium on a mission.  His voice was certain and his words were deliberate.  He spoke of our conversation last February 2011 and the impact our families’ struggles had on him.  He heard and listened that evening and it has stayed with him each day since.  Now sitting at the end of the panel table I began sobbing through his words.  Someone had listened.  To me.  Someone wanted to fix it just as badly as me.  I was overcome with the enormity of all the hard work of this last year and how fruitful it truly proved to be as I sat in this briefing room.

 

The Congressman finished his remarks and left the podium stopping to shake the hands of each of our group of presenters.  He got to the end of the line; there I stood still wiping tears away when he grabbed my hand, put his other arm around me and said, “Thank you.  Thank you, Rachel.”

All I can say after that was how relieved I was when I was not next up to speak.  Rather it was time for Karen Driscoll, Rock Star Autism Mama from ACT Today for Military Families, to do her thing and educate all those in attendance (some legislative staffers, some folks from TRICARE and other organizations) about the reality of the ECHO program segregation of autism treatments.  As usual, she nailed it and there was little to discuss.  Autism therapies in ECHO = WRONG.

We were also honored to have Dr. Geraldine Dawson, Chief Science Officer of Autism Speaks, speaking on the science of autism.  You see, the DoD has long been arguing the validity and effectiveness of Applied Behavior Analysis (ABA).  No worries, Friends.  We now have permanent record of Dr. Dawson speaking at this briefing in support of military families having access to ABA as “the safe, effective medically prescribed standard of autism care.”  Hooah, Geri!  THANK YOU!

It was my turn.  People, let me tell you, I was also on a mission.  I had no doubt that my message was clear and would be heard once again – NO military family deserves to be denied appropriate, accessible best-practice medical care.  Military families with autism are proud families, too.  We want the best futures possible for our kids.  We want to serve our country, too.  And when our soldier’s work is done, we want him or her to retire knowing that they have earned a secure future of care for their children.

Though my speech came easy to me, I had rehearsed it a thousand times in prior weeks; I was not prepared for the unexpected flash of PTSD when I arrived at the words, “Now a Sergeant Major, it was only a month into my husband’s second tour in Afghanistan when he received my call to tell him – his baby girl had autism.”

I broke down in sobbing tears again.  So did most of the room I was told.  I could no longer see through the fishbowl tears that had settled on my eyeballs, but I take their word for it.  By the end of my speech, I felt pretty confident that I was heard and it was probably the first standing ovation I have ever received outside of singing The National Anthem (and those suckers had to stand).

Next up was Jeremy Hilton, a retired Navy veteran and stay-at-home-dad to a beautiful girl with autism.  His wife is active duty Air Force.  Jeremy spoke of the painfully long process to obtain the correct diagnosis of autism and went on to explain what little services they were able to access via ECHO – just four hours per month at a provider that was three hours away.

Karen Driscoll spoke again.  This time she shared her military family’s story.  She spoke of her husband’s service.  Jerry is a career Marine who has served two combat tours in Iraq as a MEDEVAC pilot, flying into hostile areas to retrieve our wounded.  He was doing just that when he learned of his own son’s autism diagnosis.  Karen spoke clearly and honestly about ‘the right thing to do’ in moving our legislators to take action and pass HR2288.  Thank you, Karen.  You are a force.

The briefing wrapped up with two more families that came forward to the podium.  An Army wife and mom came forward and spoke of the lack of support and services for her child with autism.  She was angry.  I don’t blame her.

But our last speaker was perhaps the most affecting.  A veteran of nearly 30 years came forward holding a picture of himself and his son with autism.  Scott spoke of reaching his 28th year of service to his country and preparing to retire.  When he presented himself for the retirement physical, he learned he had lung cancer.  And he was relieved.  Relieved.  About having cancer.  WHY?  Because it meant he had to stay in the service to receive treatment, and it meant that his son would continue to qualify for autism treatment via ECHO.  CANCER.  Scott may be one of the most loving parents I have ever met.  He felt blessed by cancer so that his son could be treated for his autism just a little longer.  And yes, THANK GOD, Scott is doing well today.

So you see, this briefing was kind of a big deal and I have so much more to share with you about my trip to DC.  But I have a lot of work still ahead, and so I will have to fill you in on the rest a little bit later.

THANK YOU to everyone who has supported me and encouraged me throughout this journey to help my fellow military brothers, sisters and children.  I have gained more blessings and learned more about life through these struggles than I ever could have without my daughter’s autism.

By the way, today is our Diagnosis Day.  Groundhog Day.  But for the first time in two years, I feel like I have woken up to a new day.  The curse and darkness of that word ‘autism’ have been lifted.  I now know without a doubt that my daughter and everything that makes her who she is, has been and shall continue to be, the most absolutely perfect gift God could have ever given me.

Cheers, my friends!

Rachel


Backstage

Load-in.

For most evening events it happens around 1pm.  The trucks begin to arrive and the once cavernous arena comes to life with loud thuds and shouts echoing across the stage.

“Sound check! T-minus four hours! Move your ass!

If it was a Saturday show I was psyched.  It meant I could work load-in and watch barely two dozen stagehands construct the most sophisticated sets and lights with stairways, exploding elements and speakers each the size of a greyhound bus.  It meant all day backstage watching the contents of three or four trailer trucks choreographed with miraculous precision into a seamless 90-minute dance of pure showbiz magic.

I loved my time as an event security supervisor.  A huge departure from my 9-to-5 in finance, it was exciting and strenuous work.  And on occasion it was a little dangerous.  But nothing could have kept me away.  I had the unique experience of sitting right in front of a small theater performance by Dave Matthews Band, it was my job to drool over Dave inconspicuously while keeping the rest of the ladies from attacking him.  No complaints about that.  I shook hands with my idol Sarah McLachlan (I used to be a singer, too, and LOVE her music) and I had the opportunity to tell her how much her talent meant to me.  Over the years in that business, I enjoyed meeting many talented people who inspired me.  I learned so much about what it takes backstage to pull off a performance that people can really be inspired by, not just entertained.  An evening that will stay with the audience forever, a true lasting memory.

So here I am today.  Working backstage once again, but this time it’s a very different venue.  A Congressional briefing.  Congress.  Pause.  Breathe.  Yeah, seriously – CONGRESS.  ME.  How the hell did I get through security HERE?

It started in a very unlikely place.  Not on Capitol Hill, no millions paid to lobbying firms.  It started in someone’s living room in Connecticut.  With one Congressman.  And one family’s story.  Ours.

Way back, what seems like lightyears ago last February 2011, SGM and I attended an evening of discussion between families living with autism and our Congressman, John Larson (D-CT).  I had already done two of these kinds of events with other Congressmen in Connecticut and at each I had walked away feeling good that one more legislator had now heard about the unique challenges facing military families with autism.  But this exchange was different.  Something beyond bending the Congressman’s ear had taken place.  He was moved by the numbers. 1 in 88.  He was shocked by the lack of access to care.  Less than 10 %.  What likely stirred him the most was that my husband standing beside me, having served twenty-four years and three overseas deployments, could not retire because he would lose what little services are available to treat his daughter’s autism.

A few days later, a phone call from Congressman Larson’s staff: “Can I ask you some more questions?”  Ask me anything. I have been waiting so long to tell the world.  “How does a military family go about getting autism therapies through TRICARE?”

OMG.  Seriously?  Do you have a few hours?

“Well,” I began, “it amounts to jumping through flaming rings of fire while blindfolded with your feet and hands bound with duct tape while your child with autism is left spinning in a corner and your husband dodges IEDs in Afghanistan.  Do you want to hear more?”

And so it began.  By June, Congressman Larson’s staff and the Government Relations team at Autism Speaks along with myself and Marine Corps Warrior Spouse Karen Driscoll had finished the draft language of a bill and it was now ready to drop.

The several months that followed felt like a kick in the throat.  We rode a rollercoaster through the debt-ceiling crisis in August, threats to cut the defense budget and then it was the holidays and Congress was on recess.  I had been told more than a few times that this bill’s chances were plainly slim-to-none.  With all of the budget cuts looming, our military families with autism just weren’t on the radar.  This show might get cancelled before it even begins.

But I still showed up to work backstage.  I felt it was my duty.  I still asked folks to contact their member of Congress and ask them to support HR2288 – the Caring for Military Kids with Autism Act (CMKAA).  I couldn’t give up.  I had some help, too.  Diary of a MomTry Defying Gravity, Hopeful Parents, Lou’s Land, stark. raving. mad. mommy. and RANTS FROM MOMMYLAND, just to name a few.  Like professional stagehands, the coordination was incredible, the focus and dedication to making it all fit together was impressive.  The set being constructed was coming along.

Autism Speaks stepped up in a major way and began putting the word out about the bill.  They highlighted our efforts on Pearl Harbor Day with Autism Votes creating an Action Alert with easy access for people across the country to contact their legislators and ask for support of CMKAA.  We now have 35 Cosponsors from both sides of the aisle agreeing that our military families are deserving of treatments for their children with autism.

Backstage over the last several weeks, a handful of us military parents who signed up for load-in have been calling members of Congress to personally invite them to this briefing.  We have politely badgered some staffers more than once.  Personally, I have tweeted and facebook’d the crap out of every Member of both the House and Senate Armed Services Committees.  Because we need an audience for the show to go on.

On Tuesday, the lights will go up in a room on Capitol Hill filled with superstars from across the country.  You might recognize of few of the names on the set list, but I doubt you’d know the major stars until you hear their stories.  But trust me. Their stories will have you on your feet screaming for this bill to pass.  It’ll be an event that stays with you for a lifetime.  I know it will stay with me forever.  I have never worked so hard on a backstage load-in.

So what do I wish most for people to learn from my story? 

That it is the backstage crew that makes the magic happen.  That EACH AND EVERY PERSON can make a difference by speaking up.  That working backstage might be the most life-changing job you will ever have.

I want you to hear that a stay-at-home-mom (or dad) who hasn’t earned a paycheck in nearly ten years can DO something just by sharing their story.

Backstage is where it all begins.

[To learn more about the Congressional briefing on Autism and its impact on our military families, go –> HERE <–.  You can read the copy of the bill and find out ways to support CMKAA –> HERE <–. Thank you!]


MIB are coming to get me now

Hi.

I am pretty confident I am on a few different ‘Watch Lists’ by now.  But I’m ok with that.  Our military kids are worth it.

So humor me before I am dragged away in the middle of the night by Men in Black with night-vision who drive dark Suburbans with tinted windows.

Sign the White House Petition asking for the Obama Administration to respond to the 1 in 88 military kids with autism who are not getting the care they need.

It would be the best parting gift as I disappear from the face of the earth never to be heard from again.  Please tell my children I love them.

We have 30 days to get 25,000 signatures.  I know we can do this if everyone does their part.  This is not a petition about politics.  It is a petition for EACH & EVERY CHILD that serves alongside his or her brave mom or dad that sacrifices to keep us safe.

Are YOU willing to serve THEM?

Click –> HERE <– to go directly to the official page of We The People petitions to The White House.

Don’t be confused, this is separate from CMKAA.  I’m still working my ass off on seeing that bill pass.  But you see, I don’t like to wait on the ropeline for hours in 4-inch heels when I can sneak into the backstage with a little help from my friends.

Cheers,

Rachel

 

[Ed note: Please know that the only way we can reach 25,000 signatures in such a short time is by everyone sharing with their friends and family and so on because I don’t actually have 24,999 friends to coerce into my sneaky plan.  Don’t forget, this is not political, just the right thing to do. Here’s the actual link that you can copy and paste into your own Facebook, Twitter or email to all your peeps: https://wwws.whitehouse.gov/petitions#!/petition/make-autism-therapies-accessible-all-military-dependents-wautism-tricare-medically-necessary-remove/chcgvKdB ]

 


“I’m Just a Bill” by CMKAA

[Updated May 28, 2012]

For anyone looking for a refresher on how the Caring for Military Kids with Autism Act – formerly H.R. 2288 (CMKAA) is going to need your help to get passed, I’m handing over today’s post to Schoolhouse Rock.

Our “Bill” passed the House, but is now in jeopardy of dying in the Senate.  He has already been shot down once.

Don’t let CMKAA die in the Senate Armed Services Committee.  I don’t have the cash or enough booze for the funeral.

Thanks.

Click –> HERE <– to sign the petition at Change.org.  Every signature is sent to every Member of the Senate Armed Services Committee. That’s where “Bill” is waiting to be voted on. He already passed in the House.

23,000 military kids are counting on you.


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