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


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


What I Signed Up For

Of all titles I hold, Mother is the one that has brought me here today to speak to you.  I am an Army wife as well, but that is a role I chose shortly after 9/11 with full knowledge of what I was getting myself into.  War was imminent, terror threat levels were the new casual conversation and I was marrying a career soldier who told me his duty would always come first.  And I signed up for that.

I signed up to serve my country, too.

And when my husband ran off with the other love of his life, the Army, to fight on the battlefields of Afghanistan as an Infantry Platoon Sergeant, I proudly kissed him goodbye as he patted my belly and told our daughter to behave for mama. He told her he’d be back to meet her when his work was done.

My husband was due home on leave for my daughter’s birth the following summer of 2006.  He would arrive a day late to meet her, but in military life it was understood that a day late was far better than not at all.

Our daughter, RM, was born with special needs and required intensive medical care.  She barely survived those first weeks and yet at 15 days old, my husband kissed her goodbye and headed back to Afghanistan.  He would return home again on a Red Cross alert just days later as our baby girl began slipping away.  My husband remained by her side for another two weeks of emergency leave to watch her inch her way to stable condition before leaving her in her hospital bed once again to return to war.  Because that is what we signed up for.

It was my job to serve on the home-front.  Our daughter had a feeding tube and was in congestive heart failure.  She had open-heart surgery at 4 months old, but by then Daddy was home to help and RM’s health was improving.  Not once did we worry about finding her the medical care she required.  We felt blessed to be a military family and often joked that we only paid eight dollars for hospital parking for open-heart surgery – as it should be when you serve your country.

In early 2010, under falling snowflakes my husband kissed his healthy, beautiful little girl goodbye once more as the battalion loaded up and headed back to Afghanistan.  This was Army life, so we wiped our tears and held our heads high, proudly waving to Daddy as they pulled away.

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.

“What does that mean?” he said. “Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.”

But I had no answers for him.  I had no hope to offer.

I had no points of contact as an active duty Guard family.  I had no one to ask, “What do I do next?”  For the next several months, there were many more phone calls to my husband in Afghanistan, and still I had no answers to offer him.

What I had learned was that autism therapies were largely unavailable to our military families.  I had learned that the small amount of services offered through the Extended Care Health Option were grossly inadequate and often impossible for military families on the move to access.

My husband has served honorably for 25 years.  He was a scout sniper in Desert Storm.  He has earned a bronze star, an army commendation medal and a combat infantryman badge with star for his service throughout two tours in Afghanistan. He has also been awarded a meritorious service medal, three more army commendation medals, six army achievement medals, and eight good conduct medals.  He has earned the right to retire.  But he cannot.  Because he worries every day for our daughter and her future and he knows that he loses what little services are available to treat her autism if he retires.  He worries every day that if he gets sick or injured and is medically retired, that he loses that coverage.

There is one more tour to Afghanistan on our horizon.  And my Command Sergeant Major will go once again when duty calls.  Because that is what he signed up for.  That is what our service as a family requires of us.

But not being given access to the care our children need is NOT what we signed up for.  This is NOT what any military family deserves.  We sacrifice so much – YEARS at a time and we complain little.

Since my daughter’s diagnosis of autism, it has been my determination to see that the right thing is done here.  Because if you ask any military family what they DID sign up for, they will tell you – freedom – yours and mine.

And as a mother, I simply cannot let any of our military kids go without the treatments they so desperately need to which their service to our country undoubtedly entitles them to.  Because they did not sign up for THIS.


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!]


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