$49 Conference Rate for Military Families at Autism One!
AUTISM ONE 2009 MAY 20-24 CHICAGO Westin O'Hare Hotel - 6100 North River Road, Chicago, Illinois CHANGE HAS COME THE AUTISM ONE 2009 CONFERENCE IS BEING HELD IN HONOR OF ANDREW J. WAKEFIELD, MB, BS, FRCS, FRCPath HOPE IS REAL. CHILDREN ARE RECOVERING.
A diagnosis or suspicion that your child has autism is devastating. After months or years of denial it cannot be denied any longer. You are faced with the greatest question of your life – how to best help your child. The difficult step toward finding answers is a courageous one that can be as frightening as the initial suspicion or confirming diagnosis. It means recognizing and rejecting that labyrinth of gobbledygook, circular reasoning, and non-answers parents most often hear. It means educating yourself. It means trusting yourself. It means believing your child can get better.
YOUR INSTINCTS ARE RIGHT. THERE IS A BETTER WAY.
We have helped thousands of children by educating parents, practitioners, and others about treating the underlying biomedical conditions. This year’s theme, Change Has Come, reflects the immense strides our community has made over the last decade. Ten years ago no one believed a child with autism could get better. Today, thousands of children are getting better. And, yes, children are recovering. Pre-Conference Programs include: • Art of Cooking Special Diets • Beginning Biomed - In Spanish! • Special Education Law Day • First Responders Training • Defeat Autism Now! Clinician Training • Elizabeth Birt Center for Autism Law & Advocacy
Main Conference Starts Earlier. This year, the main conference starts on Thursday evening. Please check the schedule page at www.autismone.org for over 100 presenters including the leading researchers, scientists, educators, therapists, and parents. The main conference covers biomedical research and treatments; behavior/education/ communication therapies; complementary and alternative medicine; adolescence and adulthood; and government/legal/personal issues.
KEYNOTE ADDRESS: JENNY McCARTHY
Special Features include: • Environmental Symposium • Elias Tembenis Seizures Think Tank/Presentations • An Afternoon with Dr. Amy Yasko • Language Seminar/Think Tank • Residential Think Tank • Vaccine Education Seminar Seizures Presentations (Sunday) include: • Paul Hardy, MD: Epilepsy in Autism: An Overview • Allan Sosin, MD: Masking for Seizures • Seyyed Hossein Fatemi, MD, PhD: Gaba A and Gaba B receptor abnormalities in autism • Richard Frye, MD, PhD: Subclinical epileptiform discharges & functional reorganization in atypical cognitive development
MORE. MORE. MORE. Movies, Mentor Moms, Arts Festival, Spa Night, and more. HOPE IS REAL. RECOVERY IS REAL. OUR CHILDREN GET BETTER. www.autismone.org
Photograph courtesy of Los Angeles Photographer Louis Felix. Louis is working on a photograph series of military service members and their children with autism. He will be attending the Autism One conference. See his work at http://autismone.org/movies/spectrum.wmv
Congresswoman Maloney has worked long and hard to protect the health of our military members and families, and this is demonstrated yet again through her co-sponsorship of this BILL
Autism Salutes You! Congresswoman Maloney!!! The autism community is full of gratitude for all that you have done and continue to do to help our children and our families.
While it doesn't seem near enough, all I can do is say thank you to you and your staff. Thank you for fighting for our children. And as I said to Congressman Sestak, You ROCK! The journey of autism is a long and hard one, and I am so grateful that we have your support.
Just to clarify, this is not a repeat of a post from last year! Congressman Sestak has done it again for our military kiddo's with autism, and Congressman Rodriguez, and Congressman Jones have joined in on the journey!
Last week Congressmen Sestak, Rodriguez, and Jones introduced a Bill that would move the coverage of medically necessary treatment for autism under the basic Tricare program, which is exactly where it belongs! You can read the Bill HERE
Congressman Sestak, if you happen to read this, I just have to say You ROCK!!! Our military families are so grateful to you for your continued willingness to travel this journey with us to help us heal and recover our children with autism through appropriate access to treatment.
Congressman Rodriguez, Congressman Jones, our families are grateful that you've joined us on this journey. More children and families join our ranks everyday. We do not want them to have to endure what we have, and the Bill you've introduced is a huge step in the right direction. This will allow families to concentrate their efforts on their child(ren)'s treatment, and that's where the focus should be.
I was contacted by NIH a short time ago, and Tricare has cancelled their presentation at the IACC Services Sub-committee meeting on Thursday. Due to this, the IACC meeting has also been moved to Rockville, MD. You can view the updated info page HERE
The NIH will be notifying me if Tricare re-schedules. I will most certainly be posting here if they do re-schedule!
If you are a parent, and particularly a military parent who has a child with autism; Mark Your Calanders!!!
On Thursday, March 26, 2009, the Interagency Autism Coordinating Committee (IACC) services sub-committee will be meeting to discuss strategic planning for Autism Spectrum Disorder services and supports. Tricare will be presenting during this meeting on activities surrounding Autism Spectrum Disorder.
The link to the Federal Registry of the meeting is HERE
While some of our military children with autism are able to access treatment, far too many are not. This should be of concern to us all, as should the fact that our children with autism are segregated into a completely different program in order to receive treatment because Tricare has refused to recognize treatment for autism as medically necessary, and instead treats it as a special education service. What gets me is this; Tricare and the Department of Defense will mandate the American Academy of Pediatric's (AAP) "recommended" vaccine schedule for military dependent children, yet they won't mandate the AAP's recommendation for 25-40 hours a week of ABA therapy for children with autism. I find this extremely bothersome considering there has been a boatload of research conducted on ABA and its' efficacy over the past five decades, compared to the raft-full of research done on the safety of vaccines and the current schedule.
I wrote a basic summary on both the ECHO program and the Demo project. You can read that HERE
Please plan to attend. And I would strongly encourage you all to comment. We need to have a strong presence at this meeting.
Date: March 26, 2009. Time: 1 p.m. to 5 p.m. Eastern Time. Access the Conference Call: Dial: 888-455-2920. Access code: 3857872. Webinar: https://www1.gotomeeting.com/register/563207085 In Person: The Hubert H. Humphrey Building, Conference Room 335G2, 200 Independence Avenue, SW., Washington, DC 20201.
For more information visit the Federal Registry HERE
Summary of Tricare’s ECHO Program and Demo Project
By: Angela Warner
An IACC Subcommittee meeting is scheduled for Thursday, March 26, 2009, and Tricare is on the agenda to present regarding treatment of autism spectrum disorders. For those who may not be familiar with the military, Tricare is the only provider of health insurance for active duty service members.
The presentation of Tricare’s programs for autism treatment could have the potential to impact in a detrimental manner, the treatment protocol of military and civilian children alike with regard to autism spectrum disorders. Below I will share the facts as families experience them, including our own personal experiences with Tricare’s policies and approaches, to treating autism spectrum disorders.
Tricare’s Extended Care Health Option (ECHO) program was implemented in the late summer of 2005. To date there is still a great lack of awareness among military medical providers about this program, and that ECHO provides ABA treatment for military dependent children with autism.
The failure’s of Tricare’s ECHO program led to the introduction in the spring of 2008 (through legislation spurred by parent advocates), the Demonstration Project (Demo), which is under ECHO. While the Demo loosened the reins so to speak, and they have brought many new providers and tutors on board in recent months; the Demo project still falls far short of serving the military community of children with autism.
The ECHO program allows only for administration of ABA by a BCBA or BCABA. The Demo project allows for administration of ABA by qualified tutors, with oversight and review from either a BCBA or BCABA.
We all know we are in the middle of an ever growing epidemic of children with autism. The number of BCBA’s and BCABA’s in this country alone would not be enough to serve the military community alone, forget the rest of civilian families seeking their services for their own children with autism. As of the end of 2007, and only covering a twenty four month tracking period after the implementation of ECHO, there were 13,243 military dependent children with autism of active duty families. At the end of 2007 (covering the same tracking period) only 1,374 of those children with autism were enrolled in the ECHO program so they could potentially receive treatment for autism. (FOIA is in the Documents section)
Both the ECHO program and Demo project segregate children with autism in order for them to receive medically necessary treatment. This happens with no other disease or disorder no matter of origin, whether neurological, neurobiological, genetic, physiological, or mental. This is wrong, and should not be.
As of April 1, 2009 the monthly cap for services will be increased to $36,000 per year; far short of what is recommended for children with autism.
In order for a child with autism to be accepted into either the ECHO program or Demo project, the child must be enrolled and accepted into the Exceptional Family Member program (EFMP) first. The EFMP is supposed to prevent members from being assigned to a new duty station where there are not medical services available to treat children or spouses with any condition that requires ongoing specialist care.
Requiring enrollment in the EFMP can often present the first barrier to care. Many military members do not want their child to be identified as having special needs or autism within the military system. Although there is much literature to the contrary, having a spouse or child enrolled in the EFMP, can for many military members, be career suicide. The member may be required to serve at a duty station in order to advance their career, which may not be able to provide the services required in order for EFMP to approve the duty assignment. While many times an unaccompanied tour is possible (member goes leaving family at last duty station until tour is over – up to four years sometimes), families who have special needs and/or autism should not have to make these difficult and potentially life altering decisions.
Once enrollment into the EFMP is established, the application process for ECHO/Demo can begin. The child must be found eligible for access to treatment for autism. The child’s eligibility for the ECHO program or Demo Project is determined by a doctor who; has never seen, talked to, nor clinically examined or evaluated the patient with autism, for whom they are making this determination of eligibility. As a parent who has a strong medical background (unfortunately no medical degree due to autism); this is medically unethical, and is causing military dependent children with autism further harm.
Through Tricare’s ECHO program and Demo project, ABA is provided as a “special education” benefit through United States Code 10 Section 1079. Yet Tricare will not provide these benefits for issues viewed as educational; only those “issues” presenting as behavioral or medical problems. In order to receive ABA one must have a prescription from a medical provider which prescribes ABA that is ultimately addressed and treated as a “special education” benefit. This is a direct conflict.
Neither the ECHO program nor Demo project are accessible to our retired military members who have children with autism. This is a huge problem within our community. Retiree’s dependents have no access to services, after serving for twenty or thirty plus years. This is just wrong. Their children with autism should have the same access to medically necessary treatment for autism.
This severe lack of services has led to the need for the military to “take care of its own” through the founding of a non-profit, Heroes With Handicaps (HWH). I am on the Board of Directors. Our mission is to assist military families who have financial needs regarding the treatment of their children with autism. What a sad day indeed when we need such.
Autism is also impacting the readiness of our troops and retention, and I can testify to that on a personal level. I will share a bit.
Our youngest son Nathan was diagnosed in 2005. His father, my husband of 12 years this month, deployed stateside in early 2006. His pediatrician prescribed Concerta as Nathan has a co-morbid ADHD diagnosis. Within 24 hours Nathan experienced visual and auditory hallucinations, which due to his inability (at the time) to receive and form receptive and expressive language to tell me what was happening; I gave him the second dose of Concerta. Nathan was hospitalized that afternoon in the children’s psych ward, at age four. He was there for 11 days. I was pregnant with our youngest and went into preterm labor at four months, and staved that off thanks to my medical training and homeopath background. Prior to this, our Family Program Coordinator, Mary Bell, recommended that I put Nathan in foster care because she had no resources or community information to give me other than a list of books. Two Red Cross messages had to be sent from the hospital, and additional follow-up became necessary in order for my husband’s return to happen. The second Red Cross message was ignored as well. He came home on day 10. My husband, Dave, was just finally able to return to complete his training this past spring. Nathan was on his road to recovery, and we had proper family supports.
The delay in Dave completing his training caused a delay in his ability to be promoted for more than a year. Dave is an E-4 (also won Airman of the Year in three categories this year – I must pat him on the back), and he is still waiting to sew on those promotion stripes to E-5. Were it not for SSI and a phone call I made last year to our local Department of Developmental Disabilities, the ensuing letter and application explaining our situation, with hundreds of pages of documentation, and the services we were subsequently able to receive... I’ll suffice to say I do not like to think of where we might be now. This is what happened to our family, and I know we are not alone.
There is no magic formula for military families who have children with autism as many would like to believe. While Tricare is trying to help, they are not listening to families until after the fact, and that is not acceptable. We are on the front lines of the autism epidemic, and they should be reaching out to us first. Tricare is not.
Major General Elder Granger, is the Deputy Director of Tricare, and oversees the entire Tricare Program. General Granger did not reach out to the community for a year and a half after the ECHO program was implemented. It was apparent long before that time, the ECHO program was a complete failure, and nothing was done.
Nathan was only able to access treatment through ECHO this past summer (we did do a few bio-med treatments/studies), and that was all again, due to advocacy of both my husband and myself. My husband and I have discussed this so many times… what would our family look like now if Nathan had been able to access treatment when diagnosed? I was the one who had to do the therapy in addition to everything else.
I would not consider the ECHO program, or the Demo project to be models for the treatment of autism spectrum disorders. There is so much more that needs to be done, and can be done to provide comprehensive treatment for our children with autism. Treatment for autism is medically necessary, not a special education benefit.
In closing, the entire IACC Sub-committee needs to understand that autism treatment is NOT a nice little package deal. And as a parent who has dealt with the system for four years, it is my personal feeling that this is exactly how Tricare will present it. Tricare is not cutting edge, never has been, at least not without parent input and media coverage, and continuing legislation. I can’t help but think of the Walter Reed scandal.
Angela Warner – Air Force spouse, autism advocate, and mom to four (two with autism)
Those lovely red spots that for a moment resemble a dew drop on a rose... and then crust over... oh yes... we have them. Now based on prodromal symptoms as of today, oh yes, we are hopeful we will have more chickenpox in our home. Sorry ya'all, but natural immunity is best to SOME diseases, and this is one of them.
YOU must understand that the (refrain here) varicella vaccine is what sent my younger son in the abyss of autism. One vaccine. I have been quite incensed ever since I realized that what was caused his regression into the world of autism.
So PHARMA and ALL others - you've got some explaining to do!!!!!! I don't think you can. Nope. Your brains are too wrapped around money.
God forbid, and I've already knocked on my head mind you, which it seems you do not do (is there anything besides wood?), should anything happen to my kids, I take the same stance I did when I made the decision to have two at home based on having two in the hospital (no drugs mind you). Responsibilty to your own family is much different from what you claim to do for an entire population. What you claim to do, can honestly can only be done on a family level. Who did I call??? My midwife, and my mother (I have two now).
You might want to PAY ATTENTION!!!!! I did. LEARN something! Now.
Footnote. I had the measles when I was 14 and I was vaccinated. What my child is going through is no worse than what I went through. Just thought I'd share. ;) My mother thought the vaccine would protect me... guess not so much... huh??? I am not anti-vaccine, but I will tell you that I think people that don't want their kids to get this or the mumps, measles, or rubella during childhood, yep I think they're maybe slightly crazy. I've seen what rubella during pregnancy can do. Amanda. 1989. Do you want to go there Pharma? And it was most likely due to vaccines as to why this friend of mine had a daughter who died a little over a year after she was born. Same reason I got measles when I was 14. Limited immunity and nothing permanent like having the actual diseases will do for the immune system. There is no more messing around.
As the saying goes (no refrain here) "shit or get off the pot".
Yes, the cat is out of the bag. General Granger is retiring. When I learned of this news about three weeks ago, I was not quite sure how I felt. The only thing I could come up with is this; change can be a good thing, and I am hopeful for the future of our children's medically necessary treatment for autism. I must admit that I know who will follow in his foot steps. More on that later.
I want you to reflect on this song and the video. Seal did a beautiful remake of this song, and the album is out. Seals video has been removed from You Tube. Although this has nothing to do with vaccination, I am posting a clip of the song with video footage from the "Green Our Vaccines" rally in D.C. last June. (Man I sooo wanted to go to this rally!) This was the only clip of the song that I could find.
Can you imagine standing in a croud of over 8,000 parents and relatives listening to this song while holding up a picture of your child with autism??? I still get tears in my eyes just thinking about the power of parents, and most importantly, the power of our children and their need for recovery.
Change is a good thing. Listen and Watch HERE And thank you "kslangnc" for "You Tubing" this intense and moving moment for the world to see.
I love Autism One! It's official :) I am going to Autism One in Chicago in May. You can learn about the conference HERE The conference begins on Wednesday and ends on Sunday. Autism One has a special rate for our active duty military members and family members. Forty Nine Dollars. Yes, you read correctly. $49.00. Yes, that 49 bucks covers all five days. Thank You Ed!!!
Let me tell you a little about the Founder and Executive Director, Ed... He served in the USCG from 1976 to 1985. Autism One stands beside our military families.
Make sure you check out the line up of speakers and presenters before you make up your mind. You can do that HERE
We all live within our means. On an E-4's pay how in the world did I do this? How can I afford to go to Autism One in Chicago??? Let me tell you. Get on the phone with your like-minded friends. Who has miles that can be used for hotel or air or both? Who has some dough to help compensate for something someone else in your group may be able to cover through miles??? It's kinda like a carpool, but different. How about that.
So now that you're brainstorming after looking at it all, you can register for Autism One HERE
Come prepared to learn tons, make friends, and have fun!!! Bonus? The weather in Chicago in May is typically beautiful spring weather. I should know, I grew up about three and a half hours from Chicago.
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
