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President Elect Obama: A Military Autism Mom Reaches Out

Help_meBy Angela Warner

Dear President Elect Obama,

Congratulations on your election. As the 44th President of the United States of America, and the Leader of our Country, you have a huge job ahead of you. I have always been an optimist. If one has no hope, then what do they have? I am inspired by our country, and I have confidence that your actions will impact our great nation with desperately needed positive change.

A friend of mine, Mark Blaxill, Board Member of SafeMinds and Editor at Large for Age of Autism , wrote to you recently. Mark stated that you are also the First Father of the Autism Generation HERE. Indeed, you are. Mr. President, you are the First Father to a generation of children who are physically sick with autism, and who desperately need your help and immediate action.

I sincerely commend you for your swift introduction of the “Autism Treatment Acceleration Act of 2008”, which was sponsored by you and Senator Durbin. This is a huge step in the right direction, and your actions demonstrate there is truth in your statement to Coy Barefoot that you are the guy who will stand up and say, “We have a national crisis, and we are going to help these children. And we are going to find out what is going on”. As the mother of four children (two have autism), I am inspired and full of hope for our children.

The “Autism Treatment Acceleration Act of 2008”, does provide comprehensive coverage in the areas of Applied Behavior Analysis and other structured behavioral programs, occupational therapy, physical therapy, speech therapy, and medications. While this is comprehensive to these specific treatment modalities, there is much more that needs to be done and I appreciate the opportunity to explain further.

As I stated, our children are physically sick with autism, meaning autism is the manifestation of their physical illness. While ABA and the other traditional therapies are scientifically proven to improve the functioning and behaviors of children with autism, a significant population of our children, are physically too sick to benefit from these therapies. When our children with autism have their physical illnesses addressed and treated, they begin healing, feel better, and they will further benefit from these prescribed therapies.

While medications can be helpful and lifesaving for our children when used judiciously and prescribed by a physician experienced with treating autism; many medications commonly prescribed for our children are not treating the underlying physical illness our children experience, and are only masking the symptoms. This does not seem wise, and our children and society as a whole need a much more comprehensive plan for treating and healing the autism epidemic.

I am not only the mother of four, two with autism, but also a proud Air Force spouse. I have been heavily involved in advocacy for our military dependent children with autism, that they might have full access to medically necessary treatment as outlined in the “Autism Treatment Acceleration Act of 2008”. I have been in contact with a benefits expert at the Office of the Assistant Secretary of Defense for Health Affairs, TRICARE Management Activity, and this Act will not mandate our military entitlement (TRICARE) to provide the coverage of the Act for our military dependent children with autism. While our military dependent children with autism can receive ABA, that is it (no other structured behavior programs), and only through Bill 1079 which provides ABA as a “special education benefit” through the Extended Care Health Option (ECHO) Program under TRICARE. ABA is not special education; it is medically necessary treatment. Only 10% of our military dependent children with autism have been accepted into the ECHO Program so that they might receive ABA treatment.

Especially egregious is the fact that our retired military members who have dependent children with autism do not have the ECHO benefit available to their children. A Bill was recently introduced in both the House and Senate that if passed would extend the ECHO benefit to our retired military families, but this benefit is not enough for any family.

I am on the Board of Directors for Heroes With Handicaps, and every single day I hear or read about military dependent children (and civilian as well) who have been denied occupational therapy, physical therapy, speech therapy, and many other services or equipment because they have a diagnosis of autism. Heroes With Handicaps (HWH) is a non-profit organization, and our mission is to help military families who have a child or children with autism with financial assistance for their child’s therapies and bio-medical treatment. Twenty three percent of the applications HWH has received have been from retired military families seeking financial assistance. While it is comforting to know our family is not the only one financially challenged because of the expense of treating autism; it is heart-wrenching to read through these applications for financial assistance and know that there are hundreds of thousands of families across this great nation, both military and civilian, who are in crisis.

Autism is an epidemic. The Center’s for Disease Control (CDC) says that we have 1 in 150 children who have autism, but this is incorrect. This statistic was released in a February 2007 report and was based on the study of eight year olds in 2000 and 2002. Those children are now 14 and 16 years old. If one looks to the Department of Education for the 2006-2007 school year, 1 in every 67 children has autism. If one looks to military statistics; in active duty families 1 in every 88 children have autism, and if you add in our retired military families 1 in every 67 military dependent children have autism.

We, the parents, who are healing and recovering our children with autism, have to continue to hope and have to trust that you will be “that guy”. Following are my suggestions for you to continue on your path to being “that guy”, because our children and our future need an epidemic of solutions to the autism epidemic.

1. Enact into law H.R. 2832 ‘‘Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007’’. In 2007 Generation Rescue commissioned a survey modeled after the CDC’s survey from which the 1 in 150 statistic was derived. Generation Rescue’s survey found that vaccinated boys are 155% more likely to have a neurological disorder, 224% more likely to have ADHD, and 61% more likely to have autism. We need to conduct new research free of the conflict of interest that has plagued previous studies. The raw data generated from these studies must be made available to the Autism Research Institute, and any other researchers ARI may designate. Until this happens, the public mistrust of our federal agencies, who are responsible for ensuring public health will continue.

2. Enact into law a federal and state level redaction of any mandatory vaccination, including those our military members receive. Provide for unbiased informed consent and informed refusal, and provide for the opportunity to initially receive vaccination with the right to future refusal with no penalty to the member. Many members discover that vaccines may be the cause of their children’s autism onset after joining the military. Once you’ve signed “that piece of paper” it is difficult if not career ending to further refuse. Members want the right to decline non proven vaccination, yet still serve their country and are willing to take those risks. Vaccination is an invasive medical procedure, and there is no other medical procedure in which a one size fits all approach is taken and certainly not mandated.

3. Enact into law a federal mandate requiring the Center’s for Disease Control (CDC), Food and Drug Administration (FDA), National Institute of Health (NIH), Institute of Medicine (IOM), American Academy of Pediatrics (AAP), and the American Medical Association (AMA) to meet with the Autism Research Institute (ARI), Defeat Autism Now Doctors (DAN!) (both M.D. and N.D), and other Autism Researchers and Practitioners that ARI may designate.

4. Enact into law a federal mandate which requires those on the front lines of the autism epidemic, Pediatricians, Gastroenterologists, Neurologists, Immunologists, Allergists, and over the next three years all medical practitioners to attend a DAN! conference, in order to maintain their medical license. This requirement for attendance at a DAN! conference should also be part of medical school for current and future physician’s in training, and required for licensure. Incentive for physician’s to obtain credentialing through the American Medical Autism Board must be provided. Yearly continuing education must be required of all medical practitioners in current autism treatment modalities as set forth by the Autism Research Institute and the American Medical Autism Board until, both the cause of the autism epidemic is isolated and the rate of autism returns to 1 in 10,000 or less.

5. Enact into law a federal mandate which requires current federal Representatives and Senators to be briefed on the national emergency that the autism epidemic is, by the National Autism Association and SafeMinds.

6. A revision of the bill known as the “Autism Treatment Acceleration Act of 2008” which would include coverage of any prescribed medical treatment, vitamin, or supplement (nutritional, herbal and/or homeopathic) for the treatment of autism spectrum disorder. This revision should include Naturopathic Doctors (N.D.) who may prescribe the above as well for the treatment of autism spectrum disorders, regardless of whether the insurance provider/company currently covers N.D.’s. Additionally, the “Autism Treatment Acceleration Act of 2008” should specifically address and provide coverage of medically necessary and prescribed treatment through any of the modalities addressed above from DAN! doctors, whether they be an M.D. or N.D. and regardless of whether the M.D. or N.D. is a provider with any particular plan or entitlement. This coverage should be in full less the usual co-payment which would apply to any other doctor visit. 

7. Enact into law a federal mandate that would require the Department of Defense, TRICARE Management Activity, and any other health “entitlement” any other federal employee may have to be covered as outlined in the original “Autism Treatment Acceleration Act of 2008” Bill, and the above section (6) of this letter pertaining to the revision of the “Autism Treatment Acceleration Act of 2008”, and with regard to the prescribed medically necessary treatment (including vitamin, herbal, and/or homeopathic supplementation) for the treatment of autism spectrum disorder.

For years parents of children with autism have been viewed in a less than favorable light. I am here to tell you that we are educated, we are intelligent, and we are recovering our children from autism. We have listened to the agencies whose responsibility it is to “protect public health”. The time has come for them to listen to us. We are the parents of children with autism who have strong backbones, and who are recovering our children.

We need a leader who will not back down and will not be bought out. The majority of parents of children with autism know what caused our children’s autism. What this is about is simple. This is about having the ability and resources to heal our children, prevent the autism epidemic from worsening (which it does with every passing minute), and our dedication to future generations in seeing the rate of autism significantly, and we mean significantly, decline.

Autism needs a Champion! Autism needs a Hero! And we need one Now! Mr. President Elect Obama… if you can do these simple things, help us heal and recover our children, and stop the autism epidemic, you would not be “that guy”… you would be “that Man”… The Autism President!

Angela Warner is a military mom (and a mother warrior) to four children. She lives on the West coast.

Comments

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Amber

Thanks. I'm wife of an Air force Officer constantly fighting with Tricare. I have 2 kids on the autism spectrum. I have Echo and Family plan. I'm constantly being denied OT for our 4 year old son and he can't even hold a pencil, get dressed (button,zip etc)or understands self help skills. Yet, I have to prove this. It's really sad that every time,we ask for services (Dr. office must add extra paper work unlike medicare/Medicaid and other insurance companies) we need to send those EXTRA 200 sheets (IEP,all sp,ot,Dr's diagnose, proof etc) because if you don't you will be denyed. Tricare doesn't not keep those documents on a open file like other insurance companies.

G E Jackson

The Obama Bill does NOT provide a $$ amount for minimum coverage: only that Autism be covered and ABA be deemed an a legal treatment method. That is about what we have in GA: the insurance companies meet the mandate by giving us the SAME 20 out patient visits as for an adult alcoholoc/drug addict. The insurance companies make a pediatric decelopment disorder = to an adult addiction!
UNLESS there is a minimum $50,000 floor ($36,000 as just passed in Illinois) the Obama Bill will NOT help us !!
Read the Obama Bill and tell Obama we need a REAl Bill with REAL insurance coverage!!
Watch for a Ryan's LAw in GA to be introduced in Jan 2009 !!

Lin

Thanks for everything you do for our kids, Ang! You're awesome!! We appreciate you!

Lin

Dawn Loughborough

Angela,

This is an excellent letter! You are a a true leader in the face of all our adversity, and on the path to getting resolution! Thank you for representing us so well!

Best,
Dawn

K Fuller Yuba City

I don't know how anyone could read that letter and not be emotionally moved and moved to action.
You are a hero not just to our military families but all families touched by the epidemic of Autism.

Christine Heeren

Angela- Thank you for all you do for military families, like mine.

Kelli Ann Davis

Hey Christina:

Exactly right! This is no longer in Obama's court and we've (wink, wink) already started work on changes which Durbin's staff is expecting after Thanksgiving break.

Hopefully, our-mutual-awe-inspiring-butt-kicking-bill-revising-friend will have a draft finished by early next week.

BTW: You know what I *absolutely* LOVE about this community??? The fact we ALL have our unique gifts that we bring to the table.

[Think: revising legislative language = visit to the dentist for a root canal]

Jeanne

Ang! Great job! I'm so proud of you and all you do for military families and their children with autism! You're incredible!!!

cblakey

To be exact, this bill hasn't been introduced yet. Since Obama has officially resigned his Senate seat, he can't introduce it. However, Durbin certainly could. There are many problems with this bill-one of which being the establishment of medical home models for autism treatment. We here in Illinois already live in this kind of beurocracy where high-paid psychiatrists and administrators with political ties get money for doing essentially nothing-because there are no services to coordinate.
Don't get me wrong-we are slowly climbing our way out of the bottom of the barrel (we rank 51st in services for individuals with disabilities and 48th in education) due to some pretty amazing efforts by people like Laura Cellini working on our Medicaid Waiver and Insurance Bill, but we should be highly suspicious that this bill is coming from Senators in a State with such a poor track record for taking care of our children.
-cblakey

Maurine Meleck

Great letter, Angela. Thanks. I'd like to note a new book out, the first of it's kind on the military with a chapter written by a psychiatrist friend of mine, Dr. Lionnel Solursh. It's called-"Returning Wars' Wounded, Injured and Ill. I don't know if there is a chapter specifically related to vaccines, but it must certainly be implied in the illnesses of some of the military.
Published by Greenwood Publishing Group. www.greenwood.com
Maurine

ASDMom

GREAT JOB!!! Wonderful statements.

Holly M.

Great Job Angela...I like how your 1st order of business was the vaccinated never-vaxed study. I like how you mentioned the GR study in the paragraph!!!

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