By Sarah Stockwell

Military families with a child with autism are used to fighting. The servicemembers fight on the battlefield when deployed and the spouses, with constant military moves in and out of states and school districts fight for their childrens’ right to an appropriate education as well as the daily battle to raise a child in a world they are ill-equipped for and vice versa. One fight that military families with children with autism should not have to face however is the battle to ensure their children receive appropriate medical care. There are estimated to be over 20,000 military children with autism.

One such fight is gearing up in the military community right now. Tricare, the military healthcare provider has made drastic changes to the way it provides ABA therapy for military dependents with autism spectrum disorders and these changes are due to take effect on the 25th of July.
Military families have been campaigning for years to improve access to autism therapies for their children and until now, have been making progress. There was a semi-victory in this respect for coverage for retiree families and wounded warriors, when a ‘pilot program’ was included in the recent NDAA. Shortly after Tricare announced (later than was originally required) the details of this pilot program in June, advocates in the community noticed that Tricare had made unannounced, extensive changes to the eligibility criteria and method of access for ABA under Tricare, which would apply to the children of both active duty troops, retirees and wounded warriors.

A small smattering of the changes –

•    Children will need to receive ADOS-2 and Vineland-II to ‘confirm’ their diagnosis of autism (after obtaining a DSM-IV diagnosis) for eligibility of ABA therapy and Vineland will need to be repeated every 180 days, ADOS-2 each year.

•    Children older than 16 require a ‘waiver’ to be granted ABA services, effectively imposing an age limit on the provision.

•    ABA will only be authorized for 2 years, one year at a time. Once the 2 years are complete, a waiver is required to continue treatment.

•    Vineland and ADOS are required to show ‘progress’ and the absence of progress, as measured by these tests, is a criteria for discharge from therapy.

•    BCBAs and BCBA-Ds are required to supervise the program. BCaBAs are now demoted to technician level therapists and cannot supervise programs.

Some might argue that ‘at least the military get something’ in terms of insurance and yes, that is true. Or at least it was.  Because of these changes, many children may be denied services for a multitude of reasons, some of which are outlined.

-    High-functioning children will be at risk, because their Vineland and ADOS scores might not be significantly impaired enough. This also includes children like my own son, who has progressed from moderate/severe autism to a high functioning child, BECAUSE of the intervention he’s received. He has progressed enormously, but he still has autism. He still has challenges that need intervention.

-    Children over the age of 16 will lose coverage without a waiver. There is no data that supports the lack of efficacy of ABA in children over 16.

By Sarah Stockwell

Summer is almost here, which for almost all families with a child on the autism spectrum brings up the question of how to ensure your child has enough activities planned to keep life as consistent as possible. We are all told how important consistency and predictability are for children with ASD, but, for many thousands of military families with children with autism, the summer is often anything but consistent. For a significant number of military families, summer, means relocation, or PCS (Permanent Change of Station). Military families can move locations anywhere between every 1-5 years, depending on the branch of service, rank and career field of the serving member.

As a military family ourselves, since our son was born we have lived in 3 states. He is only just 6 years old. We moved states within weeks of our son being diagnosed at the age of 2 and are in our 4^th house in 6 years.

Upon being told consistency, routine and predictability were important, I considered our lives. It just wasn’t an option for us. So, I resolved to do exactly the opposite. Our son would have to learn to live with the uncertain and so I regularly sabotaged our plans, or scheduled things so they wouldn’t be quite so fixed as to cause a problem. Luckily (?!) it worked well and we have a child that can ‘roll with the punches’ and handle a change in his expectations. It’s one thing off our list anyway.

There is estimated to be over 20,000 military dependents with autism, which is a huge number, and often families have more than one child on the autism spectrum.

For those who don’t move regularly, consider the services your child receives – occupational therapy, speech therapy, ABA therapy, which might all be through different providers.

 Now consider your pediatrician. How many pediatricians have you seen? How many have you ‘fired’ because they wouldn’t  consider you an equal partner in your child’s care or take seriously your reticence regarding vaccination? How many specialists does your child see?  How long did it take you to find doctors you are happy with?

Managing Editor's Note: This is a petition request so military families can receive services for their children. You do NOT to be in the military to show your support and sign the petition. To learn more about autism and the military please visit CMKAA.org and Autism Salutes. Click HERE to read & sign the petition.

WASHINGTON D. C., VA JANUARY 5, 2012

We need twenty-five thousand (25,000) signatures for a White House petition related to autism therapies by February 1, 2012. The goal of the petition is to ensure that autism therapies are accessible to all military dependents with autism (not currently the case.)

We have legislation introduced in the House, we do not have legislation in the Senate. Without Senate legislation, or getting the attention of the White House through this petition, there is little to no hope that the discrimination against military families and their dependents will cease.

What military families are asking for from our government is no different than what we are asking states to do in the form of autism insurance mandates; provide coverage for autism treatment without barriers to care and without discrimination.

Make Autism Therapies Accessible to All Military Dependents with Autism.

1 in 88 active duty military dependents has autism. (Most recent stats available - 2007) Less than 10% are receiving proven therapies such as Applied Behavior Analysis (ABA).

TRICARE military insurance segregates ABA into Extended Care Health Option (ECHO) which itself is secondary to discriminatory enrollment in Exceptional Family Member Program (EFMP).

We ask President Obama to direct the DoD & TRICARE to place ABA therapies within TRICARE standard care as medically necessary, removing the arbitrary dollar cap and making therapies accessible to dependents of retirees.

By Dan Olmsted 

Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?

While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines. 

Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."

Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science." 

And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.

Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...

 

Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."

Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."

Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it?  Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery. 

Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."

Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study." 

Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease. 

P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.

The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.

In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," Mark  Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."  

I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.

--

Dan Olmsted is Editor of Age of Autism

 

 

 

 By Angela Warner

A few days ago I received a copy of the Complaint (lawsuit) filed in US District Court in Washington, DC, against the United States Government, the Department of Defense, Tricare Management Activity, and Secretary of Defense Robert M. Gates. You can read the Complaint HERE. Most of the letters cited in the complaint can be found in the Documents section on Autism Salutes (scroll down on the left side).

As a parent who worked on and continually wrote about what was happening with the legislative efforts mentioned in the Complaint, I have been very aware for years that the reason the DoD set up the ECHO program the way they did was to avoid paying for the expensive therapy that benefit our children with autism. That would be ABA therapy.

Since the Complaint was filed in US District Court, TRICARE Management Activity issued a letter on June 30, 2010, to the CEO’s of all its’ contractor’s, one of which is Humana. You can read the letter HERE. The letter stated that TMA was reviewing its policy on whether or not they would provide ABA under the basic Tricare program and that they expected to have this review completed by September 20, 2010. The letter also stated the contractor’s for TMA were to hold in abeyance until the review was completed; claims filed and authorization requests, for ABA. That means NO MORE DENIAL LETTERS for claims or authorization requests are to be SENT until the review is complete. Keep in mind, the letter from TMA was issued June 30th. On July 8, 2010, a denial letter was issued by one of TMA’s healthcare contractor’s.

By Angela Warner

Military Families vs. United States of America, U.S. Department of Defense, TRICARE Management Activity, and Secretary of Defense Robert M. Gates

It does not feel good to bring a lawsuit against the very country and government that you took an oath to serve and protect, and knowing that to uphold that oath might possibly come at the expense of your own life. On the flip side, our families who take the oath to serve and protect this great country expect our government, to provide the medical care and family supports that our families require to, uphold our oath to serve and protect our great nation.

In spite of the lack of medical care and family supports, our men and women in uniform have upheld their oath. In spite of the lack of medical care and family supports, our spouses have held down the home fronts’ . We have upheld our end of the oath and in doing so we all have paid a heavy price, but none heavier than the price our children have paid. Over the years I have spoken with many service members who have been wounded in action; “wounded warriors’. Every single one of them has told me that what they have endured pales in comparison to what our children with autism endure. Our government has failed to provide medical care, and our military dependent children with autism have been the ones left laying wounded on the battlefield. The very government we swore to protect could care less, and we have simply had enough.

In the summer of 2005 TRICARE implemented the Extended Care Health Option (ECHO) Program, and acceptance into this program is the only way a military dependent child with autism can receive medically necessary Applied Behavior Analysis (ABA). Keep in mind the child must be accepted into this program and that determination is made by someone sitting behind a desk that has never met, let alone examined, your child. If your child is accepted into ECHO, there is no guarantee that they will receive ABA as the child’s program must be run and/or overseen by a BCBA or a BCABA who is a TRICARE provider. We all know BCBA’s and BCABA’s and are in high demand and short supply. To top all this off, TRICARE capped the annual benefit for ABA at $36,000. Retiree’s dependents are not eligible for ECHO, nor are those not on active duty, in the Guard and Reserve even though they are in most cases eligible to receive basic TRICARE benefits or have the option to purchase them as one would regular health insurance.

By Angela Warner

Today the Senate version of the National Defense Authorization Act for 2010, will most likely wrap up and go to the floor for a vote. Senator Gillibrand of NY had prepared an amendment to be introduced to the NDAA '10, which would have provided treatment for autism under the basic Tricare program. Senator Gillibrand's amendment was REJECTED by the Senate Armed Services Committee! Currently treatment for autism is provided as a special education benefit, which segregates children with autism into a seperate program. Due to this segregation and the constraints of the program, less than 10% of military dependents with autism are able to access any level of care. Those children that are able to access treatment receive far less than the physician recommended level of treatment, and the program is not even open to retiree's dependent children with autism.

Senator Gillibrand's amendment had the potential to change all of that, and it was REJECTED by the very people who are charged with ensuring the needs of the military and it's members are addressed.

We, the members, spouses, and parents of military children with autism need your help to try and stop this from happening. Our military families shoulder significant responsibilities, and our families are in crisis. Please, if you can, take 10 minutes right now, and help us help our families and most importantly, our children with autism.
Listed below are all the phone and fax numbers to the Senators on the Senate Armed Services Committee.

Here's what you can do.

Managing Editors Note. Angela says she will happily buy either an Age of Autism T-shirt, or an Autism Salutes lapel pin for the first person to correctly name the song she was listening to for much of the writing of this piece, and the original band members. Me? I'm stumped. KS

By Angela Warner

I write this with the constant reality looming over my head, and the feverish pitch that has developed regarding insurance coverage of medically necessary treatments for autism. My heart is heavy. We are all working so hard in so many different areas to make this finally happen for our kids. We press on. We are Autism Warriors.

We have no idea what tomorrow will bring on the battlefield. We press on… As the Military Contributing Editor for Age of Autism, I take this opportunity to fight again for our military dependent children with autism.

By Angela Warner

I have been reading Age of Autism since it’s inception as Rescue Post. I am proud of Age of Autism. I’ve witnessed incredible growth of the world’s only autism daily web newspaper both in the information put forth, and in the readership and the ensuing dialogue in comments. I am especially proud of Age of Autism for embracing and opening the door, for the mutual support of both the military and civilian communities with regard to all things autism. It is an honor to share that Age of Autism will have a new category; the Military Category.

As a military spouse who has been contributing to Age of Autism since it was Rescue Post, I am especially thrilled. We’ve seen growth here at Age of Autism, but we’ve also seen growth of the autism epidemic both in the military and civilian community. We’ve also seen a rise in the challenges, or problems, that come along with this heartbreaking rise. In the military community the most recent FOIA shows that as of 2007, one in every eighty-eight military dependent child of an active duty member has autism. This figure most likely doesn’t include my own boys because of how and when the stats for the FOIA were tracked. Currently we’re waiting on new statistics.

By Dan Olmsted

I hope regular readers of this site will indulge a fairly extended incursion into a topic that, on the surface, is unrelated to autism but that connects at a deep level with our point and purpose. It concerns what I would call an analogous situation, and analogies sometimes have just as much power as direct argument and evidence.
 
This piece is triggered by two articles written last week on The Huffington Post by Greg Mitchell, editor of Editor & Publisher magazine and nine books including “Wrong for So Long: How the Press, the Pundits -- and the President -- Failed on Iraq.” Greg is one of the really smart guys orbiting the media universe, and was among the first to raise questions about the weak and wobbly performance of the press in covering the so-called “war on terror.” 
 
My own experience with Greg comes from something he wrote in March 2004: “My vote for Iraq reporter of the year goes to a low-profile journalist who did not cover the war itself and has never even been to Baghdad. His name is Mark Benjamin, 33, and he serves as investigations editor for United Press International out of Washington, D.C. E&P has documented his work since last autumn, and now the heavy hitters - The New York Times and The Washington Post - are following his lead, taking a long look at the forgotten American victims of the war: the injured, the traumatized, and the suicides.”
 
At that point, Mark and I were colleagues at UPI -- I was his editor on those stories, although we were first and foremost co-conspirators in trying to bring attention to the woeful way the military was treating its soldiers and veterans. We had already been working together a couple of years at that point, starting in early 2002 with an investigative series on an anti-malaria drug called Lariam. The Army invented it as older malaria pills were losing effectiveness during the Vietnam era, and rushed it onto the market with inadequate testing under a licensing deal with Roche. It didn’t take long for the pharmaceutical version of  “sin in haste, repent at leisure” effect to appear -- by the late 1980s, severe mental problems that included suicide and aggressive behavior were showing up in the military and also in the general traveling population, which was being prescribed Lariam as the new wonder drug.

The New York Times has a chilling article about servicemen who are turning violent once home. Our own Dan Olmsted wrote about the malaria drug Lariam, and its connection to murder/suicides in military members while he was with UPI. (Click HERE.) So what's happening to our military members that is making them so violent today?  Comment away. If you are a military member, we allow anonymous comments, as long as they meet our guidelines posted on the left sidebar under info.

Read the full article HERE.

For the past several years, as this Army installation in the foothills of the Rocky Mountains became a busy way station for soldiers cycling in and out of Iraq, the number of servicemen implicated in violent crimes has raised alarm.

Nine current or former members of Fort Carson’s Fourth Brigade Combat Team have killed someone or were charged with killings in the last three years after returning from Iraq. Five of the slayings took place last year alone. In addition, charges of domestic violence, rape and sexual assault have risen sharply.