Today I received a letter to Dr. Casscells, who is the Assistant Secretary of Defense (Health Affairs), which was sent to Dr. Casscells from Congressman Darrell E. Issa. You will find this letter in the documents section of my blog.
Congressman Issa's letter was endorsed by the following Congressmen and Congresswomen:
Mr. Bob Filner (CA - 51st District) Mr. Chris Smith (NJ - 4th District) Co-Chair, Coalition on Autism Research and Education Mr. Mike Doyle (PA - 14th District) Co-Chair, Coalition on Autism Research and Education Mr. Dan Burton (IN - 5th District) Ms. Ileana Ros-Lehtinen (FL - 18th District) Mr. Jim Moran (VA - 8th District) Ms. Grace F. Napolitano (CA - 38th District) Mr. Brian P. Bilbray (CA - 50th District) Mr. Mike Rogers (AL - 3rd District) Mr. Chip Pickering (MS - 3rd District)
Autism Salutes these Congressmen and Congresswomen for their strong actions supporting medically necessary treatment for children with autism and necessary TRICARE policy reforms urgently needed to deliver medically prescribed treatment for our children with autism.
Two Points:
1. Autism Votes!
2. The National Defense Authorization Act of 2008 gives the Secretary of Defense, Dr. Robert Gates; complete latitude to make these continually endorsed (national autism organizations and now congressional leaders) and parent supported changes to both TRICARE'S Extended Care Health Option (ECHO) Program and the Department of Defense Enhanced Access To Autism Services Demonstration Project (Demo).
Oh... alright... Point Number Three!
AUTISM VOTES!!!
These swift and strong actions wholly supported by the above mentioned Congressmen and Congresswomen will not only help all children now; these actions will offset the future cost of caring for future adult children with autism (which will run into the trillions) because therapy (ABA and others) will help them recover! And recovering children with autism; they most certainly will, can, and do!
Congressman Sestak, my fellow advocates and I want to thank you, and express our gratitude again for your willingness to face opposition and introduce your now passed Amendmant to the National Defense Authorization Act '09 (NDAA), which will help our military dependant children with autism receive desperately needed medically necessary treatment!
We also want to thank as well, Congresswoman Susan Davis, Congressman Ike Skelton, and Congressman Vic Snyder, Co-Sponsors of Congressman Sestak's passed Amendment. Thank you for your support of our children and families living with autism.
We thank Autism Speaks for their e-newsletter alerting thousands of people to the action Congressman Sestak was taking on behalf of our children with autism.
Lenny - Schafer Autism Report - hats off to you our friend and snap to salute for your support!
And last, but not least; my fellow advocates and I thank and express our deep gratitude to The Autism Society of America (ASA). Autism Society of America's immediate response to Congressman Sestak's initiative through the online letter writing tool, granted potentially millions of parents worldwide, the opportunity to support Congressman Sestak's Amendment.
And my own personal thank you to Age of Autism... the original and continuing media platform publicizing the truth regarding the "treatment" our military dependant children with autism "are receiving".
There is still much work to be done, and believe you me; we are WORKING!!! We WILL make this happen! Senate is next among a few other challenges. Remember... AUTISM VOTES!!!
Integrity First, Service Before Self, Excellence In All We Do! - Air Force Core Values Otherwise Stated... Semper Fidelis!
In my mind I see thousands of our uniformed service men and women, their spouses, and our children with autism saluting YOU Congressman Joseph Sestak! Congressman Sestak, you are a great American!
For the past (almost) three years, 95% of our military dependant children with autism have gone without any treatment for their autism spectrum disorder due to the failures of the TRICARE Extended Care Health Option (ECHO) program. This program segregated our children’s treatment and defined teaching our children the most basic living skills as special education. ECHO policy also put an arbitrary monthly dollar amount cap of $2,500 on our children’s treatment.
There are a growing number of military parents and spouses who have been advocating long and hard for change to TRICARE ECHO policies. Our national autism organizations have embraced and strongly support our work. We thank you all! You too, are great Americans!
And now, Congressman Sestak has embraced this issue. The autism treatment issue. Congressman Sestak has been meeting with the Armed Services Committee and with regard to the specific issue of raising the monthly dollar cap placed on our children’s treatment for autism; he has met opposition. Due to the opposition he has faced, on Tuesday, May 20, 2008, Congressman Sestak will introduce an Amendment to HR 5658 – National Defense Authorization Act ’09 (NDAA). This Amendment will increase funding of autism treatment (specifically behavior intervention services based on ABA principals) from $2,500 a month to $5,000 a month.
This and future changes to TRICARE’s ECHO policies, we are advocating for, are extremely important as TRICARE policies are federal policies. The autism community (not just military) needs to RALLY! And support Congressman Sestak’s actions by way of letter writing (there is a sample letter HERE) and faxing to your state’s federal Senators, Congressmen, and Congresswomen. To locate your state’s federal legislator contact information you can go HERE. Or you can sign ASA’s online petition HERE. Do one or do all!
Congressman Sestak, we have all been doing the happy dance because of the action you are taking on behalf of our children’s lack of treatment for autism. We have been doing the happy dance because you have stood up to the opposition we and our children with autism have faced for years to get their treatment fully covered. We are doing the happy dance because we have a glimmer of hope that our children are going finally get effective treatment that they need and deserve. Children with autism can recover and every single child with autism deserves that opportunity!
The truth will always prevail, and it is love of truth that makes this happen. The truth and how love makes that happen was expressed best by my great-great-great uncle,
“For it is a fire that kindling its first embers in the narrow nook of a private bosom, caught from a wandering spark out of another private heart, glows and enlarges until it warms and beams upon the multitudes of men and women, upon the universal heart of all, and so lights up the whole world and all nature with its generous flames.”
Ralph Waldo Emerson
This is what is happening in the autism community. Love of the truth is glowing and enlarging. And it is helping our children.
When my husband, SrA David G. Warner II and I married in 1997, the above quote was read (at our request) during our wedding ceremony.
In order to be part the fire kindling, you have to love truth.
As my dear friend Karen and our beloved Marine Corps say, Semper Fi!
I need your immediate help. On Tuesday, May 20th, Congressman Joe Sestak of Pennsylvania will introduce an Amendment to H.R.. 5658 (the Fiscal Year 2009 National Defense Authorization Act). This Amendment will help thousands of military children and families impacted by autism. On behalf of these military families, I ask for your immediate help and action to voice your support of Congressman Sestak's Amendment. I've outlined instructions below for contacting your Congressional Representative and Senators. I ask for your phone calls, faxes, and signature to our online petition. With your immediate action, we can effect change and help to improve the lives of our special children (and the many more yet to be diagnosed).
Congressman Sestak's amendment will increase funding of autism treatment, including behavior intervention services based on the principles of Applied Behavior Analysis ("ABA"), for military children through the TRICARE Extended Care Health Option (ECHO) from $2,500 a month to $5,000 a month. The effectiveness of ABA in autism has been well documented through five decades of research by using single subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. ABA improves language and communications skills, social skills, daily living skills, and play and leisure skills. ABA works to develop positive family relationships and helps to reduce harmful and interfering behaviors.
A child's treatment plan should be based on individual need and consistent with best practices. The National Academy of Sciences and the American Academy of Pediatrics have recommended a minimum of 25 hours of ABA a week. Optimal results are often seen with 35-40 hours a week. The $2,500 monthly financial limit of the TRICARE ECHO program is not sufficient to meet minimum standards. Costs for these programs often exceed $5,000 a month. Congressman Sestak's amendment marks great progress toward recognizing the importance of providing effective intervention services.
During this time of persistent conflict and extended tours of duty, our military families face an extreme set of circumstances. Autism greatly compounds the challenges many military families bear. Providing for effective medical care and family supports is essential to mission readiness. We owe military parents who have children with autism the very best quality of life that we can offer. Our military men and women who deploy repeatedly to combat and serve this great Nation with honor and integrity deserve nothing less.
Congressman Sestak is a great American. His advocacy for our military children and families is greatly appreciated. This Amendment is intended to help the most vulnerable of our military children, but unfortunately, significant resistance is expected. We need your help. We need your action on behalf of our military children with autism.
I thank you for your support of our military children and families. Together we will effect change!
As I begin to share our family’s journey through the hell of autism, I have to be frank and tell you that I do not like to write this story. It makes me angry, but most of all it makes me want to cry for the precious time and lost years during which our two boys with autism spectrum disorders have not been able to access medically necessary treatment due to the barriers to care that are the Extended Care Health Option (ECHO) program.
Our family has been so traumatized by the impact of autism and the lack of services available for our children that I am unable to speak about what we have been through to a large degree. The only way our family has been able to help our own children is to turn the trauma that we have experienced into action through advocacy to help all children with autism; both military dependant and civilian children alike.
It is through daily prayer which I firmly believe has been heard by God, Mother Nature, and Saint Jude, that our family has been able to “carry on”. It is my hope and prayer that you will find what I am able to share with you following below, to be so disturbing that it will lead you to action on all levels to help our children with autism and our families. It is also my hope and prayer that you realize that what has happened to our family is not unique.
My husband, SrA David G. Warner II and I have been married for eleven years. My husband has been active duty for almost four years and is attached to The Portland Air National Guard in Portland, Oregon. We have four children. Isaac is eight and has been diagnosed with an autism spectrum disorder, tethered spinal cord syndrome, spina bifida occulta, and also has a trebeculated bladder with diverticuli. Nathan is six and has also been diagnosed with autism spectrum disorder. Emma is four, Samantha is one, and both are typically developing.
To say that autism has impacted our lives is a gross understatement. To say that autism has turned our lives upside down and inside out might some a bit closer to the truth, but still, a gross understatement. Autism has touched every single area of our lives; from grocery shopping, to family outings which are non-existent now due to the unpredictable nature of autism. In the rare event that we do all go somewhere together, I have cards that I carry in my purse ready to be handed out that explain autism, in case there is a meltdown.
I cry when I think of how far into recovery my boys could be right now had they ever been able to receive the medically necessary treatment they need through the ECHO program. I find it unconscionable that a price tag has been put on our children. I am disturbed to know that over ninety-five percent of our military dependent children with autism have been denied medically necessary treatment through the ECHO program policies. I am absolutely heart broken when my phone rings and it is another military family getting in touch with me (as happens roughly three to four times a week) and these families are all saying the same thing. My child is going without medically necessary treatment because of the ECHO policies.
Autism and the special needs of our older son have negatively impacted our relationships with our other children, our friendships, our extended family, our marriage, and sadly my husband’s military career.
I get angry when I think about the support, or shall I say lack thereof, that our family has received from our own base. Two years ago my husband went stateside TDY and was scheduled to be gone for a period of three months. Our younger son (he is more severe on the spectrum) regressed severely, and became extremely aggressive. I reached out to my Family Program Coordinator for help, resources, and support. She recommended that I put my son in foster care. Nathan ultimately had to be hospitalized due to his regression and aggressive behavior. The hospital wanted my husband to return home. A Red Cross message was sent to my husband’s home base chain of command, and chain of command at his TDY station. His Major (who was then a Captain) did absolutely nothing. Ultimately a second Red Cross message was sent. My husband’s Major again did not issue a leave number. When my husband did finally return home on emergency leave, we were both met with threats and intimidation from his chain of command.
What needs to be understood is that this whole situation never would have happened had our family been able to access medically necessary treatment for our boys’. Our family has never been able to access treatment through ECHO, and sadly the demonstration project does nothing to increase the accessibility to treatment; in fact the demonstration creates further barriers to adequate treatment.
I hear new stories every week from all over the world regarding rampant lack of support and denial of medically necessary treatment for our children with autism and other special needs. In fact our family has felt it on both the level of autism and the other special needs, and again directly from my husband’s chain of command. This past fall when our oldest son Isaac had surgery to un-tether his spinal cord (see attached picture of my son’s spinal cord during the operation), my husband received a letter of counseling (LOC). My husband’s Major ordered him to schedule Isaac’s post surgical follow-up appointments outside of his micro-neurosurgeon’s recommendations and medical advice. The Major is not a doctor and most certainly not a micro-neurosurgeon. The Major ordered my husband to do this knowing I was available to take our son to his follow-up appointments. The Major in question and ALL those in my husband’s chain of command have refused to remove this LOC from my husband’s file. This is discrimination against our military members who have children with autism and other special needs at its finest.
That what it is; my husband dons his uniform daily with pride. I wear his dog tag with pride. When I am asked for ID in any situation, I pull out my military ID. When my husband is deployed, it is I who is holding down the home front I am proud to be of service to my country as well. I press my husband’s uniform and feel proud to do so. My husband and I are proud to serve our country, even amidst the lack of services, intimidation, and blatant discrimination we have and continue to experience by the organization we serve under.
I recently read an article in which Secretary Gates stated: “I’m asking you to be part of the solution and part of the future”. Secretary Gates, and anyone else reading our story, I am asking you to “be part of the solution and part of the future” for our children with autism and for our country. Our children can no longer be ignored, our numbers are too great. According to the Department of Education we have one in every sixty-seven children in America receiving special education services under the autism eligibility category. One in sixty-seven children with severe autism! If our children are not able to access medically necessary treatment in the immediate future, in another ten years (if even that long) our country is going to be in complete financial crisis because of the autism epidemic.
The truly saddening thing is; the impending financial crisis can be avoided. Children with autism can recover, just as children with cancer can recover.
A dear friend of my great-great-great uncle Ralph Waldo Emerson once wrote: “Your doctors, and your proctors, and your deans, Shall not avail you when the Daybeam sports New risen o’er awakened Albion. No! … Because your manner sorts Not with this age wherefrom ye stand apart, Because the lips of little children preach Against you, you that do profess to teach, And teach us nothing, feeding not the heart.” Lord Alfred Tennyson
I ask you to consider this timeless poem in deep reflection and think of the autism epidemic. The heart is our children and our children are our future. We have a moral and ethical obligation to offer every single child with autism the opportunity for recovery.
Thank you for the opportunity to share what I am able of our family’s story. Thank you for the immediate and necessary action you will take regarding the medically necessary treatment coverage for our children with autism spectrum disorders. Thank you also for the immediate and necessary action you will take to help our children and families as outlined and supported wholly by our national autism organizations as demonstrated in the fully endorsed letter to Secretary Gates regarding such.
Very Respectfully,
Angela Warner – Air Force wife and mom of four children (two with ASD) Vancouver, Washington
Heroes With Handicaps is a 501 (c) 3 which provides financial assistance to military families seeking treatment for their child (ren) with autism not covered by Tricare. Please visit Heroes With Handicaps to learn more and to pick up an application if you need assistance.
If you are interested in hosting a fundraiser for Heroes With Handicaps, please contact Angela at autismrr at gmail dot com
Check back soon to learn how you can purchase an Autism Salutes lapel pin. Every single penny generated from the sale of these pins goes directly to Heroes With Handicaps.
Lee Silsby accepts Tricare! Save $20 on your first order. Click, read, and save!
Because I am turning Autism Salutes into somewhat of a personal blog, yet still autism and military related; I feel the need to clarify that our beloved autism organizations linked here have only endorsed the letter to Secretary Gates (the very first post) and that my views and feelings in any other posts do not necessarily reflect those of our autism organizations.
Endorsing Organizations
On behalf of children and families everywhere impacted by autism, I would like to thank from the deepest parts of my soul, the following organizations who have endorsed what I was able to put together "With a Little Help From My Friends". Words could never fully express the gratitude I feel. Ang
