Tag Archives: ECHO

Wounded Warriors Denied Autism Treatments for Their Children

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Military Families Find HOPE Aboard USS Intrepid

(Photo courtesy of Autism Speaks and Photo-NYC.com)

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.”

Handing Mr. Strautmanis a letter on behalf of military families. (Photo courtesy of Autism Speaks and Photo-NYC.com)

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.

 


April is Autism Awareness Month AND Month of the Military Child

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!

Rachel


Surprise! We’re Polygamists!

Last year on this day, I wished my husband a Happy 8th Anniversary.

Today I seek to do the same, only I’ve decided to unleash our skeletons from the closet and announce to all of you that we are Polygamists.

Yes.  You read that correctly.

No.  It is not another woman.  Or another man.

Nine years ago today, in a beautifully rustic stone forge built in 1757, in front of just twenty-two people and an Army Chaplain, I married the SGM and The Military.

Polygamy wasn’t previously on my radar.  I grew up Catholic, so it’s kind of a no-no.  But it was pretty clear that this was a packaged deal and I wasn’t getting the SGM without also making vows to The Military.

While the first several years of marriage tested SGM and me to our very core with deployments and unexpected parenthood and less-expected feeding tubes and heart surgery and autism, I don’t think The Military struggled with these life events as much as we did.

The Military did come with a dowry that sounded pretty great on paper.  Steady income, medical and dental benefits and life insurance.  Then there were the perks such as travel, military galas and ceremonies, and all the ibuprofen a girl could ever want or need.  In reality though, I am not the one who gets to travel and I can bet the SGM would pick better places to visit that do not involve terrorists.  Our Battalion doesn’t do galas, so I don’t get to dress up like a goddess once a year and get tipsy at an open bar.  Lastly, I pay for my ibuprofen out-of-pocket because I am a dependent not living near a Military Treatment Facility.

But I keep my vows to The Military despite the fraudulent dowry.  I don’t argue when SGM is called away to war.  I man the homefront when he is gone, whether for two days or two hundred.  I fix leaky faucets and take the air conditioners out of the windows in the fall and lug them up to the attic.  I bite my tongue on the telephone as much as possible so that he isn’t burdened by stressors at home such as I.E.P.s when his stressors at work are I.E.D.s.

Sometimes in polygamy, you are just the odd woman out.  After nine years, I am confident The Military has had a lot more say in how SGM spends his time but I am not jealous or resentful of The Military.  Remember, I signed up for this.

However, I do have a bone to pick with The Military on our anniversary today, and flowers and a card are not going to smooth things over this time.  I want OUR children to be better cared for whether one of them needs open-heart surgery or autism therapies.  Step up, The Military.  SGM and I have upheld our vows.  It is time for The Military to take a turn and uphold its vows to care for us in good times and bad and stop the segregation of medically necessary treatments for autism into ECHO where they are no longer available to us when SGM retires.  C’mon, The Military – Remove that arbitrary dollar cap on autism care that limits therapies to less than half of what is recommended by the American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General.

I want to grow old with both my SGM and The Military.  I want our service and sacrifices throughout our marriage to mean something more than idle promises to care for one another.  I want The Military to continue to care for our children after retirement as it claims to do.  Because even if retirement was the equivalent to divorce, The Military would still owe child support.  It was all part of the agreement we entered into when we forged this relationship.

And really, SGM doesn’t get to pick and choose which of his children he cares for, why should The Military?

We’ve got some things to work out, The Military.  Like all marriages, there have been some major bumps on this ride but I wouldn’t trade it for the world.  Let’s make this right for all of our kids, ok?

Happy Anniversary, SGM and The Military.

I love you both.

 

[One in eighty-eight military dependent children lives with autism and current military insurance does not provide adequate care.  Dependents of retirees, even those of Wounded Warriors, receive NO autism benefits.  Please show your support for HR2288 – Caring for Military Kids with Autism Act (CMKAA) at http://cmkaa.org.  There are three easy ways you can choose one-click support of this critical legislation.]

 


Late Bloomer

“I want to tell you that Rachel is incredibly special in so many ways, and yet I want you to know that she’s not special at all.  I want you to know that there is nothing in her that is not in each and every single one of us, and that once it’s awakened, it can move mountains.”DOAM.

I grew up the last of five kids who were eleven, nine, seven and five years older than me.  From as far back as I can really remember my childhood they were already growing up and moving out.  I always felt so far behind.

I was the awkwardly tall girl in elementary school.  Tall and fat.  Like uber-fat and had short hair and I liked to play football with the boys in my neighborhood.  Can you see where this is going?

Anyways, my siblings gave me a lot to live up to.  My oldest brother got like one answer wrong on the Math SATs and is literally one of the nicest human beings on the planet.  My other brother, devastatingly handsome and the football star in high school, was the hilarious smart-ass who has always been much more brilliant than he has ever given himself credit for.  My oldest sister has worked for MIT and other top slots as a business recruiter.  My other sister graduated college with a dual degree and now works in state advocacy for persons with disabilities.  There isn’t a dud in the bunch.

Then there’s me.  I will let you in on a little secret.  I didn’t graduate high school.  There.  It’s out.

Not for lack of trying.  Well, actually that’s exactly why I didn’t graduate.  I didn’t try.  I didn’t like school back then.  I found it so hard to pay attention in the classroom when my social anxiety and chubby sense of humor got the best of me.  I wouldn’t say I was the class clown but I wasn’t exactly quiet and focused on academics.  I wasn’t a popular kid but I suppose I was well-liked enough.  I wasn’t a trouble-maker but I was not a saint.  I didn’t drink, I have never tried drugs and I always had a decent part-time job throughout high school.  SGM says it sounds like I was Switzerland – kind of a neutral entity.  He pretty much nailed it.

The truth was that I didn’t want to try and then find out that I wasn’t in the same league as my siblings.  So I rebelled a bit, found myself skipping classes and then manipulating the vice principal to avoid Saturday detention.  (I had been teaching Catholic Catechism classes at my church which I really loved doing and convinced the administrator at school that I was a good kid already doing community service.)

My guidance counselor was kind of a joke.  My senior year he tried to convince me to repeat because I was a half-credit shy of my English requirements.  I told him plainly that I spoke the language fairly well having been born here and that my writing was sufficient enough to score him a beautiful letter of resignation if and when he grew a conscience and decided he had chosen the wrong profession.  We did not part ways on good terms.

I decided instead to take the easy way out and spend two Saturday mornings pencilling in some bubbles on the GED.  I passed, with Honors which I found rather absurd at the time that there even was such a classification.

The short version of the next several years is that I tried a couple of different colleges with really no success.  My grades were iffy and I just wasn’t finding my place.  But I worked and had some good jobs, some fun jobs, and I was independent.  I just hadn’t really grown up yet.

Then I met my husband.  It was a done deal from that first date.  We were living together within two weeks and within a year we had a house, I was raising a teenage stepdaughter and expecting a baby of my own.  By then it wasn’t a matter of when I was going to be grown up – I was a grown up.

But marriage and motherhood suited me.  Military life worked okay for me, too.  I could appreciate the time apart from my husband while he was away, because it made the time together more precious.

I went back to school again but this time I was motivated.  I had a 4.0 first semester and at least nine years on every kid in my classes.  I was accepted into the honor society Phi Theta Kappa.  That’s Phi Theta, not Phi Beta Kappa – I was attending community college.  But do you know what the President of the school told us at our induction?  He said, “Do not ever believe that because you began here, that you have not earned the right to finish there.”  He was speaking of Harvard and Yale.  It was a life-changing moment for me.  After believing for so many years that I was not in control of my life possibilities, that instead there was some sort of station that I had already cemented myself within, I now was free to do or become anything I wanted.

After I became pregnant with RM, and SGM was leaving for deployment number one to Afghanistan, I understandably took a break from school.  It was good timing and would allow me to process the possibilities of what to pursue next.  But RM’s arrival was a complicated one, and the road since has been bumpy.  School would have to wait.

When my daughter was diagnosed with autism and I found out what little services are available to our military families, I was OUTRAGED.  I mean, seriously?  My husband gets shot at by Taliban and our kid gets left behind on the battlefield back at home?  So. Not. Cool.

But who am I?  What could I possibly do to change this cluster%#@&?

Well, actually, little ol’ me who never graduated high school and still has yet to earn a college degree, did do something about it.  I spoke up.

That’s it.

I just spoke up.  I said THIS. IS. WRONG.  I said our military families deserve better for their children with autism.

There is not a class for this.  Well, actually I am sure there is somewhere and it is probably very informative, but it is not a prerequisite to make the world a better place.

So, whether you’re a Late Bloomer like me, or you have advanced degrees in ass-kicking advocacy and legislative endeavors – do something.  You are just that incredibly special in so many ways, and yet I want you to know that you’re not special at all.

[Click –> HERE <– to support HR2288 by asking your Member of Congress to move this bill forward! Thank you!]


Military Families with Autism Finally Make it to ‘The Show’

[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.

Cheers.

[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!]


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


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