“Pilot Program” Held Paralyzed by

Pentagon’s Divisive Concern for Military Autistic Children

posted by Rachel Kenyon

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 these on your kid. They 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 all right… let’s just pretend this all never happened.  Coffee, anyone?

panetta

[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 find the petition HERE. Sign it. SHARE it. Thank you.]

Posted by: Rachel Kenyon | February 25, 2013

TRICARE Stalls on Implementing Treatments

Larson, Courtney Call on TRICARE to Collaborate with Military Families, Experts for Development of Pilot Program

(Hartford) – This week Congressman John B. Larson and Congressman Joe Courtney joined in writing a letter to Secretary of Defense Leon Panetta calling on TRICARE, the military healthcare program, to collaborate with military families and subject experts on the development of a pilot program which will help military children with autism. The one-year pilot program, included in the final 2013 defense budget authorization, is a modified version of a provision authored by Congressman John B. Larson that would require TRICARE to provide military children with autism greater access to behavioral health treatment.

[Read full Press Release at Larson.House.gov]

[Click on the letter below for the full document.]

panetta

Posted by: Rachel Kenyon | January 2, 2013

FY2013 NDAA Includes One-Year Pilot Program

Larson 1

“Military families have continually sacrificed so much for our freedom, and deserve nothing less than our full commitment to them. So I am disappointed that, despite broad bipartisan support for amendments in both the House and Senate that would have permanently improved TRICARE policy for military families that have a child with autism, the final defense authorization only includes a one year pilot program to provide access to behavioral health treatment, including applied behavior analysis. The appeals of families like that of Sergeant Major William and Rachel Kenyon of Manchester, have not and will not go unheeded as we pursue a permanent fix. That said, I’m glad the bill authorizes enough funding for the pilot program to provide the care military families need next year, and I’m sure the pilot will make it clear that this is the right thing to do for our servicemen and women.” said Larson. “I’m determined to continue fighting to ensure that our military families, especially those that have children with disabilities, are able to access the care their children need. I will be closely monitoring implementation of this program to ensure it provides access to treatments that families need and will continue to pursue a permanent fix in the upcoming Congress.”

“I especially appreciate the efforts of Senator Gillibrand who worked so hard to get an amendment passed in the Senate,” Larson added, “and also for colleagues in the House like Reps. Joe Courtney, Tom Rooney and Walter Jones who have been such strong supporters of this effort and I know they will join me in continuing to work on behalf of these families.”

Specifically, the language included in the National Defense Authorization Act of 2013 (NDAA) creates a one-year pilot in TRICARE to provide greater access to a behavioral health treatment known as applied behavior analysis (ABA), which has been found to significantly help children that have an autism spectrum disorder (ASD) diagnosis. The bill requires the Department of Defense to start the program within 90 days and then to report back to Congress on the cost and efficacy of the program at the end of the pilot.

Currently, access to ABA is limited by an annual dollar cap on coverage and is not available for the children of military retirees with TRICARE coverage. Larson introduced the Caring for Military Kids with Autism Act (H.R. 2288) to make ABA available as recommended by doctors to all TRICARE families in response to the appeal of a constituent – Rachel Kenyon, the wife of Command Sergeant Major William Kenyon of the Connecticut National Guard and mother of two – who spoke out at an event about the many struggles that military families with children with autism face with their TRICARE coverage. The inclusion of a one-year pilot program in the conference report comes after both the House and Senate approved bipartisan amendments to the NDAA that would have permanently required coverage of ABA treatments for active military and military retiree families as a health benefit in TRICARE earlier this year.

Posted by: Rachel Kenyon | December 21, 2012

TIME Magazine Highlights Last Minute Kill of CMKAA

time

[To read the article in its entirety, go to TIME.com]

Posted by: Rachel Kenyon | December 12, 2012

Who Decides Our Fate?

As the Armed Services Committees debate the language of the FY2013 National Defense Authorization Act (NDAA), these are the members we need to contact to remind them of the critical importance of our amendment for ABA autism treatments.

U.S. Senate Committee on Armed Services  (SASC)

Phone: 202-224-3871

U.S. House Committee on Armed Services  (HASC)

Phone: (202) 225-4151

SASC Member Phone Numbers*

[*How they voted for the Gillibrand Autism Amendment on November 29. Y=Yea. N=Nay. Contacting the Members who voted against our amendment is a priority.]

(Y) Chairman Carl Levin (D-MI) 202.224.6221

(N) Ranking Member John McCain (R-AZ) 202.224.2235

(Y) Kirsten Gillibrand (D-NY)  202.224.4451  [SPONSOR]

(Y) Joseph Lieberman (I-CT) 202.224.4041  [COSPONSOR]

(Y) Daniel Akaka (D-HI) 202.224.6361  [COSPONSOR]

(Y) Mark Begich (D-AK) 202.224.3004   [COSPONSOR]

(Y) Richard Blumenthal (D-CT) 202.224.2823  [COSPONSOR]

(Y) Jack Reed (D-RI) 202.224.4642

(Y) Jim Webb (D-VA) 202.224.4024

(Y) Claire McCaskill (D-MO) 202.224.6154

(Y) Mark Udall (D-CO) 202.224.5941

(Y) Kay Hagan (D-NC) 202.224.6342

(Y) Joe Manchin (D-WV) 202.224.3954

(Y) Jeanne Shaheen (D-NH) 202.224.2841

(N) Ben Nelson (D-NE) 202.224.6551

(N) Lindsay Graham (R-SC) 202.224.5972

(N) James Inhofe (R-OK)  202.224.4721

(N) Jeff Sessions (R-AL) 202.224.4124

(N) Roger Wicker (R-MS) 202.224.6253

(N) Rob Portman (R-OH)  202.224.3353

(N) John Cornyn (R-TX) 202.224.2934

(N) David Vitter (R-LA) 202.224.4623

(Y) Kelly Ayotte (R-NH) 202.224.3324

(Y) Susan Collins (R-ME)  202.224.2523

(Y) Scott Brown (R-MA) 202.224.4543

(Y) Saxby Chambliss (R-GA) 202.224.3521

HASC Member Phone Numbers*

[*These are the Members of the HASC who did NOT cosponsor CMKAA.]

Chairman Buck McKeon (R-CA-25) (202) 225-1956

Vice Chairman Mac Thornberry (R-TX-13) (202) 225-3706

Ranking Member, Adam Smith (D-WA-9) (202) 225-8901

Roscoe Bartlett (R-MD-6) 202-225-2721

Todd Akin (R-MO-2) (202) 225-2561

J. Randy Forbes (R-VA-4) (202) 225 – 6365

Joe Wilson (R-SC-2) (202) 225-2452

Michael Turner (R-OH-3) (202) 225-6465

John Kline (R-MN-2) (202) 225-2271

Mike Rogers (R-AL-3) (202) 225-3261

Trent Franks (R-AZ-2) (202) 225-4576

Bill Schuster (R-PA-9) 202.225.2431

Mike Conaway (R-TX-11) (202) 225-3605

Doug Lambourn (R-CO-5) (202) 225-4422

Rob Wittman (R-VA-1) (202) 225-4261

Duncan Hunter (R-CA-52) (202) 225-5672

John Fleming (R-LA-4) (202) 225-2777

Mike Coffman (R-CO-6) (202) 225-7882

Scott Rigell (R-VA-2) (202) 225-4215

Chris Gibson (R-NY-20) (202) 225-1168

Vicky Hartzler (R-MO-4) (202) 225-2876

Joe Heck (R-NV-3) (202) 225-3252

Bobby Schilling (R-IL-17) (202) 225-5905

Jon Runyan (R-NJ-3) (202) 225-4765

Austin Scott (R-GA-8)  (202) 225-6531

Tim Griffin (R-AR-2) (202) 225-2506

Steve Palazzo (R-MS-4) (202) 225-5772

Allen West (R-FL-22) 202-225-3026

Martha Roby (R-AL-2)  (202) 225-2901

Mo Brooks (R-AL-5) (202) 225-4801

Todd Young (R-IN-9)  (202) 225-5315

Loretta Sanchez (D-CA-47) (202) 225-2965

Mike McIntyre (D-NC-7)  (202) 225-2731

Rob Andrews (D-NJ-1) (202) 225-6501

Susan Davis (D-CA-53) (202) 225-2040

Jim Cooper (D-TN-5) 202-225-4311

Dave Loebsack (D-IA-2)  (202) 225-6576

Niki Tsongas (D-MA-5) (202) 225-3411

Larry Kissell (D-NC-8)  (202) 225-3715

Martin Heinrich (D-NM-1) (202) 225-6316

Bill Owens (D-NY-23)  (202) 225-4611

John Garamendi (D-CA-10) (202) 225-1880

Tim Ryan (D-17-OH) (202) 225-5261

Dutch Ruppersberger (D-MD-2) 202-225-3061

Hank Johnson (D-GA-4) (202) 225-1605

Betty Sutton (D-OH-13) (202) 225-3401

Colleen Hanabusa (D-HI-1)  (202) 225-2726

Kathy Hochul (D-NY-26)  202.225.5265

Jackie Speier (D-CA-12) (202) 225-3531

It is critical that we educate these legislators on the importance of our military children gaining access to ABA – the medical community’s standard of best practice for autism and other developmental disabilities.

A sample script for calling:

“Hello, my name is _________ and I am calling to ask for __________’s support of the TRICARE autism amendment as the committee confers on the final draft of the NDAA.”

It’s that easy. (Most cell phones do not charge for long distance calls, so I use my cell phone when calling DC.)  If you can, also add a personal comment why you feel this legislation is so important. Your voice matters, and each of these legislative offices are required to log your phone call.  So pick one, or pick all, but take the time to make a difference.

THANK YOU!

Rachel

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon, 1BN 102IN (MTN) CTARNG

Mother of two beautiful babes – one with autism.

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