Tag Archives: ABA

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.]


In the Land of Oz (Home of the IEP)

I was just tending to the farm and trying “not to get into any trouble.”  SGM’s boots had just hit the ground in Afghanistan.  RM was three years old and relatively healthy.

RM had transitioned into the special education preschool in district and was making very little progress.  When the autism diagnosis came, the relationship with the district became a cyclone of lies and deceit and I was swept up into their storm.

I don’t remember how bad it really was.  I only remember darkness and the feeling of spinning…

When I came to in an unfamiliar land, little did I know then that my house had landed purposefully atop the Wicked Witch that viciously ruled the Munchkins.

Another autism mom (RM’s YMCA teacher from more than a year prior) magically appeared descending through the clouds.  She was surrounded in an effervescent glow with a gentle smile that could kill and in place of an exquisitely sparkled wand she carried a bloodied and bruised wooden bat.

She did not hand over a pair of ruby shoes.  No.  She handed me the bat.

It would take entirely too long to explain the misadventures down the Yellow Brick Road in this one post, many are highlighted in the archives here.  But I will tell you that along the way to an appropriate outplacement I met many characters in The Land of Oz.

The Scarecrow led me in the wrong direction.

The Tin Man really had no heart.

The Cowardly Lion hid behind a title and a desk.

The Wicked Witch always waited until four o’clock on a Friday to mail shit to my home.

There were Flying Monkeys and a Forest of Fighting Trees.  All terrifying at first glance but would reveal themselves as completely ineffective at their jobs.  They relied on gruesome makeup and the special effects of words like “Due Process” and “Mediation” to keep up the charade.

I was desperate to make my way to Oz.  I thought the power I needed to find comfort at home again could only be granted by The Great and Powerful Wizard.

I honestly had no idea who The Wizard was.

I went to Congress and looked for The Wizard there.  I went to The White House, too.  I went on cable news and begged an entire nation to help me find the answer.  WHO is this Wizard?

WHO do I BEG for an education for my child?  WHO will fight for her?  WHO will LOVE her enough to say YES?  WHO will seek justice for her?

WHO IS THE GODDAMNED WIZARD??

When my child’s placement is threatened, WHO do I fight?

When her programming needs to be reframed, WHO will write the goals for her to access the same curriculum as every other child?  The science and the social studies, too?

WHO will teach me the laws and how to hold the district accountable?

WHO??

PLEASE. TAKE ME TO THE FREAKING WIZARD.

Oh.

What?

I see.

It’s me.

I was searching for what was there all along.  I just didn’t understand that I possessed the brains, heart, courage, and power to make it all happen.

Yes, I needed a little help from a Good Witch and countless other parents who shared their own experiences. Yes, I needed the bat once in a while to ward off The Flying Monkeys.  Yes, I needed to educate myself.

But in the end, it took only a few emails and a bucket of water.

Because really, truly, I had The Power all along.

So do YOU.

So do YOU, my friend.

Don’t let the cast of characters in Oz make you feel less than THE MOST IMPORTANT, EFFECTIVE AND POWERFUL MEMBER OF YOUR CHILD’S EDUCATIONAL TEAM.

The Scarecrow is not smarter than you.

The Tin Man does not love your child.

The Cowardly Lion will never have your back.

At the end of the day your brains, love for your child, and courage to take charge of the Individualized Education Plan (IEP) are the most tangible and relevant elements in a land somewhere over the rainbow.

When I felt like the characters I faced were not acting in good faith, I opened up The Curtain using The Freedom of Information Act (FOIA).  I used a State Complaint and the Individuals with Disabilities Education Act (IDEA) to pour a bucket of water on The Witch.  You see, these are free and fairly straightforward tools that were created for ME.  They are nothing to be afraid of and they are actually very easy to use.  And if you feel that you aren’t sure of how to use them correctly, there are state and federal officials who get paid to enforce IDEA and FOIA.  That is their job.  They are not Flying Monkeys, THEY WORK FOR YOU.

Actually, everyone involved in your child’s education work for you, too.  Even Scarecrow, Tin Man, and The Cowardly Lion.  They are your employees.  YOU are The Wizard.

I finally learned that the IEP is my own legally binding magic wand and as The Wizard I write the goals that dictate the services my child receives.  If district and school staff are unable to execute programming that allows my child to access the general curriculum as outlined in her goals – separate goals for each core curriculum standard* – then I grab the bucket of water and pour.

There is no one to fight.  There never was.  I just needed to figure out that I AM THE WIZARD.

I. AM. THE. WIZARD.

And so are YOU, my friend. SO. ARE. YOU.

wizard

***

[*45 of 50 states have adopted Core Curriculum Standards and have/or are in the process of implementation. Individual states should have curriculum frameworks available on their education department websites, or for entertainment factor you can request the subject frameworks from your district BOE.  The very basic intent of IDEA is that every child, regardless of disability has ACCESS to the SAME curriculum as the general education population in ALL subject areas INCLUDING ARTS AND SCIENCES. Kids with autism deserve better than goals that are reflective only of basic human functioning – they deserve to experience the entirety of what this world has to offer.]


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.


If You Know Me – You Know Why I Fight

If you know me, you should know that I already fought for – and won – the autism treatments MY child needs.

If you know me, you should know that from day one of this journey it has been about the OTHER military families who are STILL FIGHTING.

If you know me, you should know that I am fighting for the Caring for Military Families with Autism Act – because it is simply the right thing to do.

If you know me, you know my soldier has committed his life to serving our country – and you have supported us as a family along the way because you learned a soldier does not serve alone.

If you know me, you know that AUTISM IS HARD – and getting what your child with autism needs is overwhelming and exhausting.

If you know me, you will speak up for my fellow military families without hesitation – the families that serve to protect all of us – and you will contact your Members of Congress and say ‘IT IS TIME’.

IF YOU KNOW ME – YOU KNOW WITHOUT A DOUBT – I WILL MAKE IT MY MISSION TO HARASS YOUR LAZY ASS UNTIL YOU TAKE A FEW MOMENTS ONCE IN A WHILE TO SERVE YOUR COUNTRY, TOO – AND YOU WILL LEND YOUR VOICE TO THE FIGHT.

If you know me, you know I will lift each and every one of you up and praise this effort and toast you for being someone I can call ‘Friend’.

I am begging you on behalf of these families – DO SOMETHING. NOW.

 

Love,

Mrs. Sergeant Major (my friends call me Rach)

[To read the language of H.R. 2288 – Caring for Military Families with Autism Act – you can go HERE.  You will also find links to following the status of this critical legislation, as well as links to contact YOUR Members of Congress and call for their action on behalf of our military children with autism.  Thank you.]


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