Tag Archives: autism speaks

When Stars Align

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

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

Me: “Good point.”

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

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

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

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

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

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

In a single conversation, the game had changed dramatically.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you to Representative Tom Rooney for speaking up.

Thank you to Chairman McKeon for doing the right thing.

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

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

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

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

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

Cheers.

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


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!]


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