Thursday, July 23, 2009

Military Urgent Action Alert!!!


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.

1. Call and/or fax as many members of the Senate Armed Services Committee as you can. If you're not quite sure what to say, here is a simple statement for your consideration.

"I appreciate the service and sacrifice our military families have made for our country. Military families with autism face extradorinary challenges and need the Senator's help. I ask that the Senator please allow Senator Gillibrand's autism amendment to the NDAA, amendment S. 1786, to be voted on."

Other points you could make:

"The estimated cost of providing life long care for an individual who has not received appropriate medical treatment for autism is estimated to be between 3.2 million and 5 million. As a tax-paying citizen, I would rather pay for medically necessary treatment than lifelong care. Dependents with autism who receive physician recommended medically necessary treatment, have a SIGNIFICANTLY greater chance of going on to become tax-paying citizens living quality and productive lives."

---If you are a military member, spouse, or have a relative serving who has a dependent with autism, please share your story; especially retiree's.

2. Call and/or fax your Senator and ask that they support and sign on to Senator Gillibrand's amendment (S. 1786) to the NDAA.

If you're not sure who your Senator is, you can go HERE and find them. (You want to call your US Senators)

If you're looking for a way to fax, go HERE It's a terrific and easy to use online fax service that's also inexpensive and quick to set up. They offer a free trial month.

Senate Armed Services Committee Members

Senate Armed Services Committee (Phone is listed first, Fax second)

Levin – Chair MI 202-224-6221, 202-224-1388
McCain – Ranking Member AX 202-224-2235, 202-228-2862
Nelson NE 202-224-6551, 202-228-0012
Graham SC 202-224-5972, 202-224-3808
Burr NC 202-224-3154, 202-228-2981
Akaka HI 202-224-6361, 202-224-2126
Lieberman CT 202-224-4041, 202-228-0341
Webb VA 202-224-4024, 202-228-6363
Reed RI 202-224-4642, 202-224-4680
Sessions AL 202-224-4124, 202-224-3149
Vitter LA 202-224-4623, 202-228-5061
McCaskill MO 202-224-6154, 202-228-6326
Collins ME 202-224-2523, 202-224-2693
Chambliss GA 202-224-3521, 202-224-0103
Bliss IL 202-2242854, 202-228-3333
Thune SD 202-224-2321, 202-228-5429
Byrd WV 202-224-3954, 202-228-0002
Bayh IN 202-224-5623, 202-228-1377
Udall CO 202-224-5941, 202-224-6471
Hagen NC 202-224-6342, 202-228-2563
Inhofe OK 202-224-4721, 202-228-0380
Wicker MS 202-224-6253, 202-228-0378
Martinez FL 202-224-3041, 202-228-5171
Bill Nelson FL 202-224-5274, 202-228-2183
Kennedy MA 202-224-5110, 202-224-2417
Beigich AK 202-224-3004, 202-224-2354

Regardless of whether you are a military member or civilian, if you are able to take some extra time out of your day to make calls or faxes, please contact me, Angela Warner at autismrr at gmail dot com Please use only "Mobilization" in the subject line.

While I am not actually able to post the amendment tonight (I'm sometimes tech challenged), but you may refer to Senator Gillibrand's Bill that was introduced HERE The language comparable to that of her amendment which was REJECTED.

On behalf of our military families, I thank you from the bottom of my heart for any assistance you are able to provide! Now... ABOUT FACE! CHARGE!!!




Posted by at 5:04 PM 0 comments

Thursday, July 16, 2009

Who Do You Think You Are?


Angela's comment: Yep, This is my friend Jeanne, who like myself, is a bit snarky at times. And yes, we have each other's pinkies. You can check out her site at Charlie In Wonderland Jeanne, you took the words right out of my mouth... ...

Are you the parent of a child (or children) affected by autism? Are you an autism advocate? Do you run an autism organization? Do you work for an autism organization? Volunteer? Write a blog? Publish a magazine? Who are you? And more importantly, who do you think you are?

No matter what the answer to the question, you are not exempt from action alerts. Why you ask? Because until we all stand up and speak, we'll never make the changes needed to get our kids, and future generations of kids, out of the devastation that is autism.

Here are some truths I'd like to share with you:

1. Don't think because others are making calls, emailing, and faxing, that your help is not needed. As of July 8, 2009, there are 541 members of Congress, of which over 150 are members of the autism caucus. Add to that the 100 members of the United States Senate. Do the math. That's almost SEVEN HUNDRED offices to call, fax, and email.
Now, imagine if that list were only being tackled by a few people... Yeah, now you see the problem.

2. Don't think because you hold a position in this community, you're supposed to let others do the work. If anything, in my opinion, you should be the first one out of the gate making phone calls, setting an example for those around you. The "I made my calls now I need you to make yours" type thing. If people don't see you, the pillars of our community, getting involved with action alerts, they're going to probably assume it's not that important - and nothing could be farther from the truth, or more important than stopping the autism epidemic.

3. Don't think your one call won't make a difference, because I promise you, it will. Every single call counts. Every single call makes a difference. Every single call pushes us one step closer to getting somewhere in Washington.

4. And lastly, in my opinion, you have no right to spend your days talking/blogging/Tweeting/Facebooking about the fact that the autism epidemic is being ignored if you are not contacting your legislators every single time an Action Alert is issued.

Okay, I'm stepping off my soapbox now. I apologize if I have offended anyone, I'm just so tired of the apathy, complacency, and "I've done my part by simply being who I am every day" attitudes.

I mean, we're all busy, shit we've all got kids with special needs on top of the everyday busy stuff. My own schedule is crazy - 40 hours of work to cram in a 18 hour period: Consulting; Generation Rescue Angel (any other Angels scared about the number of contacts your getting each week?); building a website; autism advocacy; blog; a child with autism; two teenagers (one of which needs my constant shuttling services, and the other who has band practice upstairs every day).

All of this, yet I still find time to make the calls, send the faxes and emails, and get involved. Why? Not because I think I'm perfect or better than anyone, oh no..never that, trust me. But because I can't see another way around this problem. If we all just go on about our lives nothing will change. You can stay focused on your own world or you can open your eyes to the big picture, roll up your sleeves, and get to work.

I don't know about you, but I'm sick and damn tired of feeling like I'm running in place with this advocacy business. I want the truth to be known by all. I want the naysayers to finally admit what has happened. And also, I want to stop the epidemic in its tracks, to save future children and families from living this hell we are all living.

We're either going to pull together and do this as a team, or we're going to splinter off into groups, thereby losing any chance to stop the madness.
Please, go to Age of Autism and follow the links to your elected officials' contact information. Make the calls. Don't be intimidated. These people work for you, you put them in office and you can take them out. Of course, you should always be polite, but you can still get your point across.
Once you've done that, check out the list of autism caucus members who have not RSVP'd. Pick 5 names and contact those offices. I've found it's helpful to say something like:
"I just noticed Congressman Blank's name is not on the RSVP list for the upcoming autism briefing. I am certain that is an oversight, being that he is a member of the autism caucus. Can you check the schedule and let me know if the Congressman, his health legislative assistant, or a staffer is planning on attending... I'm sure someone is, since the briefing is autism-related..."

I promise you guys, one or two calls and you'll feel like an old pro. It's invigorating and empowering to be involved.

Maybe I'll start a new club... The Pinkie Promise Club. Members do a virtual pinkie promise with each other to get involved and make calls when the action alerts come out. If you can't make that promise, you can't be a member of the club. And if you can't make that promise, well... that's just sad.

ONE MORE NOTE on my part (Angela here) - Roll up your (blanking) sleeves people and put your boots on. We're talking breaking pinkies here. Or maybe more. That's the military way. Jeanne knows.




Posted by at 1:01 AM 4 comments

Tuesday, July 14, 2009

Our Kids Have Been Treated Like Pawns In Chess!

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. Since the passage of last year’s National Defense Authorization Act (NDAA), every state autism insurance mandate that has been introduced (that I know of), has had an annual cap of over $36,000.

Many of you might think this is stellar coverage, and that we should be grateful for the $36,000 our kids can receive in treatment. The sad reality is that less than 10% of military dependent children with autism are receiving any level of treatment for autism, and the reason is pure discrimination. Our military dependent children can only receive treatment (ABA) if they are accepted in the Extended Care Health Option (ECHO) program. Segregation. Discrimination. Acceptance into the ECHO program is dependent upon a person sitting behind a desk looking at records. This person has never met, let alone medically evaluated, our children. And even if a child is accepted into ECHO, there is no guarantee that dependent will be able to access treatment. My younger son waited over two years for treatment after acceptance. There were no providers, due to the constraints of the ECHO program.

There are many politicians who have worked very hard to help our military children, but most of them hide themselves away. Hiding from coverage of medically necessary treatment for autism, allows them to hide from the war they started and the fact that they sold out to Big Pharma.

I am constantly baffled by the fact that the most very basic treatments for autism are not covered. Just the other day I saw a video on YaHoo news about a man who battled leukemia for over a decade, constantly in and out of chemo, before he finally received a bone marrow transplant, from a woman in Australia. I would guess most if not all of his treatment was covered by insurance. God Bless this man, his wife, and their three sons; he is now cancer free. Why not the same for our kids???

There are a few wars that have been started, and the military is fighting them all. I would ask that you please watch this video HERE. I think the Generals gathered may need some input about what is appropriate and medically necessary treatment for our children. Our military is spread thin, and we need your help. You'll help with input to the gathered Generals, won't you?

Please stay tuned… There will be more to come on this. In the very near future.




Posted by at 10:51 PM 0 comments

Thursday, July 9, 2009

Rep. Maloney and Rep. Smith To Host A Second Autism Congressional Briefing

Action alert2 Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) To Host A Second Autism Congressional Briefing An Update On Federal Autism Research And Treatment Initiatives



Invite the WHITE HOUSE HERE. Invite CONGRESS AND SENATE HERE.

Please urge your lawmakers to attend or send a staff member to this important autism-vaccine briefing on Capitol Hill. Tell the White House how you feel about this briefing.

If you receive a reply from your lawmakers, send an email to: kirbylecture@gmail.com We'll keep a running tally of RSVP commitments at Age of Autism.

Friday, July 17 at 9:30 AM
210 Cannon House Office Building
Independence Avenue, Washington, DC.

FREE AND OPEN TO THE PUBLIC

Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) are hosting a special briefing for Members of Congress and their Staff to discuss issues related to autism research and treatment. We hope that you will attend the briefing to learn about the changing dynamics of the autism debate, as you will find many in government and science believe this debate is far from settled.

David Kirby, investigative journalist and author of The New York Times bestseller Evidence of Harm, Mercury in Vaccines and the Autism Epidemic – A Medical Controversy, will inform Members and their staff about developments regarding environmental factors in autism and the “Seven Studies to Watch” – Plus, changing ASD demographics post-thimerosal reduction.  Mr. Kirby will also be joined by Mark Blaxill, Editor-at-Large of Age of Autism, Director of the Coalition for SAFE MINDS and co-author of a forthcoming book on the roots of the autism epidemic, who will address the policy and public health implications of the autism crisis.

Among the issues to be discussed are:

1) The unanimous endorsement by the National Vaccine Advisory Committee to look at the feasibility of a large vaccinated-unvaccinated study, with autism as an outcome.


2) The NVAC endorsement of three other vaccine-autism investigations, including children with mitochondrial dysfunction, children with regressive autism, and vaccine injury as a risk factor for ASD.


3) Recent Vaccine Court decisions finding the MMR and  Hep B vaccines caused injuries that led to autism and MS.


4) The NIH Early Autism Risk Longitudinal Investigations EARLI study and the HHS/EPA National Children’s Study, both of which are looking at vaccination and mercury exposures, with autism as a possible outcome.


5) The CDC’s Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network, whose five-year goal includes studying "specific mercury exposures, including any vaccine use by the mother during pregnancy and the child's vaccine exposures after birth.”


6) Cleveland Clinic – A recent article in PLoS Online by authors from the Cleveland Clinic, Harvard and Johns Hopkins University reported that, "Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial dysfunction.”


7) Recent statements by Federal health officials such as Dr. Duane Alexander, Director of the Eunice Kennedy Shriver Institute of Child Health and Human Development (NICHD), who said it is important to ask if some children are, “more susceptible to some vaccine characteristic or component than most of the population, and may develop an ASD in response,” and Dr. Anthony Fauci, Director of NIAID, who said in a US News and World report article, “If we can show that individuals of a certain genetic profile have a greater propensity for developing adverse events, we may want to screen everyone prior to vaccination."


8) The U.C. Davis M.I.N.D. Institute study which found, that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted — and the trend shows no sign of abating. This as young adults begin to flood the social services system


10) Reports of reduced Autism Spectrum Disorder (ASD) severity among the youngest children, following reduction of thimerosal in childhood vaccines.






Posted by at 12:14 AM 1 comments
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