Dear First Lady Michelle Obama,
On January 20, 2009, President Elect Obama was sworn in as our great nations 44th President and you as our First Lady. As I watched the events of the day unfold, and with each passing moment, I became more filled with hope and renewed faith that there will be much needed change in the direction of our country. I was glued to the TV when watching The Neighborhood Inaugural Ball. Tears began streaming down my face when you and your husband began your first dance as President and First Lady. My husband and I dance to Etta James’ “At Last” in our kitchen all the time.
As a proud Air Force spouse, I was still glued to the TV during the Commander in Chief Inaugural Ball, and words will not do justice to the feelings I experienced when I heard you, yet again, voice your desire to support our military families.
Thousands of our families are in crisis, and we desperately need your help. While many aspects of our lives are unique to military service; one thing is not, and that is the autism epidemic. Not only am I a proud Air Force spouse; I’m the mother of four young children, two of whom have autism.
Autism does not discriminate, and is not unique to the military, nor are the lifestyle changes and huge financial challenges that come with raising and medically treating our children with autism. While it is a big one, the only exception is preparing for and living through continual deployments and temporary duty assignments. That said, in the civilian community there are countless parents who travel frequently for work. Our families and children, who make up the autism community, as a whole, do not have the support our families need nor do we have the coverage of treatment our children with autism require. I am positive you can understand some of the challenges our families face on a daily basis. There is much work that has to be done.
Autism is a physiological disorder affecting multiple body systems which impacts neurological functioning. When the physiological disease states our children suffer from are treated, they are then able, neurologically, to acquire necessary life skills imparted through behavior intervention modalities, and benefit and recover. Every child with autism is different, and has sustained differing physiological damage to their body systems in a different way leading to their neurological impairment. Each child requires a different treatment protocol designed specifically for them.
The CDC has a prevalence rate of autism occurring in 1 in 150 children based on selective data from 2000 and 2002. If you look to the Department of Education and look at population instead of prevalence, you will find that for the 2006-2007 school year data shows that 1 in 67 children have autism. In the military looking at population data, you will see that at least 1 in every 57 military dependent children of active duty members has autism.
I am very aware that Senator Durbin and President Obama drafted the “Autism Treatment Acceleration Act of 2008” (ATAA2008), while your husband was still in the position of U.S. Senator for Illinois. The autism epidemic commands consensus language for this Bill that Senator Durbin and your husband planned to introduce. The American Academy of Pediatrics and the American Medical Association are not on the front lines of treating and recovering children with autism. Our long standing autism organizations, researchers, and doctors who are putting the pieces of the autism puzzle together are on the front lines. They are the “troops” who are fighting, and winning against autism, for our children and our future.
As the mother of two boys with autism, I know what I’ve done for my children versus what my American Academy of Pediatrics pediatrician recommended. Her recommendation, which I followed, landed my younger son at age 4 in the children’s psychiatric ward for 11 days. Her recommendations were discontinued 3 years ago, and she has since been “fired” for numerous reasons including that mentioned above. Her plan was not patient centered. Her care, of our children, was not individualized and specific to our children. Our plan for our children, based on research and input from those at long standing autism organizations, has led to recovery. Our youngest son will most likely be completely mainstreamed, educationally speaking, next year.
Our military children do receive some coverage for the treatment of autism, but it is covered as a “special education” benefit under TRICARE (military healthcare coverage), and United States Code 1079. Less than 10% of our children are receiving this benefit due to the failures of TRICARE, and essentially a failure of our Department of Defense.
On October 14, 2008, President Bush signed into law the National Defense Authorization Act of 2009, which included provisions for our military children with autism that would eliminate an arbitrary monthly cap on the medically prescribed treatment our children require and instead placed an arbitrary yearly cap on medically prescribed treatment our children receive under a special education benefit. As of the date of this letter to you it’s been three and a half months going on four months, and this change has yet to be implemented officially or in any capacity for that matter, for our military children. It makes me, again, think of Walter Reed and what a horrible situation. On that note I will share with you that I’ve spoken with several of our Wounded Warriors who have children with autism. They all say the same thing and that is, “our kids have it way worse than we ever did”. Our Wounded Warriors knew the risks involved with signing up for service. Our children had no choice.
Due to the nature of the disease/disorder process of autism, I would ask that the ATAA2008 Bill language be re-visited, and that great consideration be given to input from long standing autism organizations research, and assembled into the necessary revisions of the ATAA2008 language pertaining to treatment of children with autism. I will also point out that TRICARE is an entitlement, and not health insurance, and as such the ATAA2008 will not benefit our military dependent children with autism at all, unless this too is addressed in ATAA2008. Revisions are completely necessary in order to make this Bill effective to heal our children, and healing is what they require in order to become contributing members of society.
Our nation elected and is trusting, your husband, President Obama, and you Michelle, our First Lady, to do what is right, “of the people, by the people, and for the people”. Our children with autism are a huge part of our nation’s people. Our children and families need your help to stop the autism epidemic, and help our children now be able to recover and reach their potential as contributing members of “our people”.
I have hope and faith that you will bring change for our children and families. Our children need your help. I have hope and faith that you will do right, by our children, and our future.
Angela Warner is an Air Force spouse and mother of four children (two with autism). She runs the blog Autism Salutes, and is an active volunteer for several autism organizations. Her volunteer work for Feb. 5, 2009 will consist of taking her letter and organizing a briefing package to send to our First Lady on behalf of all our children. Here's to hoping we hear something!