Sample Letter - Feel Free to Copy and Paste

Dear,

I need your immediate help. On Tuesday, May 20th, Congressman Joe Sestak of Pennsylvania will introduce an Amendment to H.R.. 5658 (the Fiscal Year 2009 National Defense Authorization Act). This Amendment will help thousands of military children and families impacted by autism. On behalf of these military families, I ask for your immediate help and action to voice your support of Congressman Sestak's Amendment. I've outlined instructions below for contacting your Congressional Representative and Senators. I ask for your phone calls, faxes, and signature to our online petition. With your immediate action, we can effect change and help to improve the lives of our special children (and the many more yet to be diagnosed).

Congressman Sestak's amendment will increase funding of autism treatment, including behavior intervention services based on the principles of Applied Behavior Analysis ("ABA"), for military children through the TRICARE Extended Care Health Option (ECHO) from $2,500 a month to $5,000 a month. The effectiveness of ABA in autism has been well documented through five decades of research by using single subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. ABA improves language and communications skills, social skills, daily living skills, and play and leisure skills. ABA works to develop positive family relationships and helps to reduce harmful and interfering behaviors.

A child's treatment plan should be based on individual need and consistent with best practices. The National Academy of Sciences and the American Academy of Pediatrics have recommended a minimum of 25 hours of ABA a week. Optimal results are often seen with 35-40 hours a week. The $2,500 monthly financial limit of the TRICARE ECHO program is not sufficient to meet minimum standards. Costs for these programs often exceed $5,000 a month. Congressman Sestak's amendment marks great progress toward recognizing the importance of providing effective intervention services.

During this time of persistent conflict and extended tours of duty, our military families face an extreme set of circumstances. Autism greatly compounds the challenges many military families bear. Providing for effective medical care and family supports is essential to mission readiness. We owe military parents who have children with autism the very best quality of life that we can offer. Our military men and women who deploy repeatedly to combat and serve this great Nation with honor and integrity deserve nothing less.

Congressman Sestak is a great American. His advocacy for our military children and families is greatly appreciated. This Amendment is intended to help the most vulnerable of our military children, but unfortunately, significant resistance is expected. We need your help. We need your action on behalf of our military children with autism.

I thank you for your support of our military children and families. Together we will effect change!

Sincerely,

Befrosted Paths to the Unknown

As I begin to share our family’s journey through the hell of autism, I have to be frank and tell you that I do not like to write this story. It makes me angry, but most of all it makes me want to cry for the precious time and lost years during which our two boys with autism spectrum disorders have not been able to access medically necessary treatment due to the barriers to care that are the Extended Care Health Option (ECHO) program.

Our family has been so traumatized by the impact of autism and the lack of services available for our children that I am unable to speak about what we have been through to a large degree. The only way our family has been able to help our own children is to turn the trauma that we have experienced into action through advocacy to help all children with autism; both military dependant and civilian children alike.

It is through daily prayer which I firmly believe has been heard by God, Mother Nature, and Saint Jude, that our family has been able to “carry on”. It is my hope and prayer that you will find what I am able to share with you following below, to be so disturbing that it will lead you to action on all levels to help our children with autism and our families. It is also my hope and prayer that you realize that what has happened to our family is not unique.

My husband, SrA David G. Warner II and I have been married for eleven years. My husband has been active duty for almost four years and is attached to The Portland Air National Guard in Portland, Oregon. We have four children. Isaac is eight and has been diagnosed with an autism spectrum disorder, tethered spinal cord syndrome, spina bifida occulta, and also has a trebeculated bladder with diverticuli. Nathan is six and has also been diagnosed with autism spectrum disorder. Emma is four, Samantha is one, and both are typically developing.

To say that autism has impacted our lives is a gross understatement. To say that autism has turned our lives upside down and inside out might some a bit closer to the truth, but still, a gross understatement. Autism has touched every single area of our lives; from grocery shopping, to family outings which are non-existent now due to the unpredictable nature of autism. In the rare event that we do all go somewhere together, I have cards that I carry in my purse ready to be handed out that explain autism, in case there is a meltdown.

I cry when I think of how far into recovery my boys could be right now had they ever been able to receive the medically necessary treatment they need through the ECHO program. I find it unconscionable that a price tag has been put on our children. I am disturbed to know that over ninety-five percent of our military dependent children with autism have been denied medically necessary treatment through the ECHO program policies. I am absolutely heart broken when my phone rings and it is another military family getting in touch with me (as happens roughly three to four times a week) and these families are all saying the same thing. My child is going without medically necessary treatment because of the ECHO policies.

Autism and the special needs of our older son have negatively impacted our relationships with our other children, our friendships, our extended family, our marriage, and sadly my husband’s military career.

I get angry when I think about the support, or shall I say lack thereof, that our family has received from our own base. Two years ago my husband went stateside TDY and was scheduled to be gone for a period of three months. Our younger son (he is more severe on the spectrum) regressed severely, and became extremely aggressive. I reached out to my Family Program Coordinator for help, resources, and support. She recommended that I put my son in foster care. Nathan ultimately had to be hospitalized due to his regression and aggressive behavior. The hospital wanted my husband to return home. A Red Cross message was sent to my husband’s home base chain of command, and chain of command at his TDY station. His Major (who was then a Captain) did absolutely nothing. Ultimately a second Red Cross message was sent. My husband’s Major again did not issue a leave number. When my husband did finally return home on emergency leave, we were both met with threats and intimidation from his chain of command.

What needs to be understood is that this whole situation never would have happened had our family been able to access medically necessary treatment for our boys’. Our family has never been able to access treatment through ECHO, and sadly the demonstration project does nothing to increase the accessibility to treatment; in fact the demonstration creates further barriers to adequate treatment.

I hear new stories every week from all over the world regarding rampant lack of support and denial of medically necessary treatment for our children with autism and other special needs. In fact our family has felt it on both the level of autism and the other special needs, and again directly from my husband’s chain of command. This past fall when our oldest son Isaac had surgery to un-tether his spinal cord (see attached picture of my son’s spinal cord during the operation), my husband received a letter of counseling (LOC). My husband’s Major ordered him to schedule Isaac’s post surgical follow-up appointments outside of his micro-neurosurgeon’s recommendations and medical advice. The Major is not a doctor and most certainly not a micro-neurosurgeon. The Major ordered my husband to do this knowing I was available to take our son to his follow-up appointments. The Major in question and ALL those in my husband’s chain of command have refused to remove this LOC from my husband’s file. This is discrimination against our military members who have children with autism and other special needs at its finest.

That what it is; my husband dons his uniform daily with pride. I wear his dog tag with pride. When I am asked for ID in any situation, I pull out my military ID. When my husband is deployed, it is I who is holding down the home front I am proud to be of service to my country as well. I press my husband’s uniform and feel proud to do so. My husband and I are proud to serve our country, even amidst the lack of services, intimidation, and blatant discrimination we have and continue to experience by the organization we serve under.

I recently read an article in which Secretary Gates stated: “I’m asking you to be part of the solution and part of the future”. Secretary Gates, and anyone else reading our story, I am asking you to “be part of the solution and part of the future” for our children with autism and for our country. Our children can no longer be ignored, our numbers are too great. According to the Department of Education we have one in every sixty-seven children in America receiving special education services under the autism eligibility category. One in sixty-seven children with severe autism! If our children are not able to access medically necessary treatment in the immediate future, in another ten years (if even that long) our country is going to be in complete financial crisis because of the autism epidemic.

The truly saddening thing is; the impending financial crisis can be avoided. Children with autism can recover, just as children with cancer can recover.

A dear friend of my great-great-great uncle Ralph Waldo Emerson once wrote:
“Your doctors, and your proctors, and your deans,
Shall not avail you when the Daybeam sports
New risen o’er awakened Albion. No!
… Because your manner sorts
Not with this age wherefrom ye stand apart,
Because the lips of little children preach
Against you, you that do profess to teach,
And teach us nothing, feeding not the heart.”
Lord Alfred Tennyson

I ask you to consider this timeless poem in deep reflection and think of the autism epidemic. The heart is our children and our children are our future. We have a moral and ethical obligation to offer every single child with autism the opportunity for recovery.

Thank you for the opportunity to share what I am able of our family’s story. Thank you for the immediate and necessary action you will take regarding the medically necessary treatment coverage for our children with autism spectrum disorders. Thank you also for the immediate and necessary action you will take to help our children and families as outlined and supported wholly by our national autism organizations as demonstrated in the fully endorsed letter to Secretary Gates regarding such.

Very Respectfully,


Angela Warner – Air Force wife and mom of four children (two with ASD)
Vancouver, Washington

The American Academy of Pediatrics Has Refused To Endorse the Autism Collaboration Letter to Secretary Gates!

The refusal of the American Academy of Pediatrics to endorse the proposed and MUCH needed and necessary changes to our TRICARE program detailed in my letter to Secretary of Defense, Dr. Robert Gates (post directly below) led me to question in depth, the reasoning behind the academy's refusal. Below you will find in order, the email exchange between myself and Karen Hendricks, AAP Assistant Director of Federal Affairs... decide for yourself... Is the response the continual spin we hear, or did Ms. Hendricks fully answer my direct question?


to

khendricks@aap.org

date
Apr 9, 2008 2:39 PM

subject
Academy Insurance Funding Question Autism, Military, Treatment

mailed-by
gmail.com

Dear Ms. Hendricks,

Allow me to introduce myself. My name is Angela Warner. I am a military spouse and the mother of four beautiful children. Two of my children have Autism.

I recently drafted a letter to Secretary of Defense, Dr. Robert Gates outlining proposed and much needed changes to our TRICARE program. These changes would provide our military dependent children with autism continuity of care and access to effective treatment. All of our national autism organizations have endorsed this letter to Secretary Gates. Many of our highest ranking senior military leaders have written and endorsed these changes as well.

I contacted the American Academy of Pediatrics in hopes that the Academy would recognize the seriousness of what our children are enduring and the treatment they have been excluded from receiving, and with hopes that the Academy would endorse. I was given the answer of "no, the academy will not be endorsing".

I am completely dumbfounded by this response from the academy, especially in light of April being the Month of the Military Child (as well as Autism Awareness Month), and the featuring of this on the AAP's website. What better way for the academy to show their true support of our military families and children than to sign this endorsement. I shared my concerns with folks at headquarters in IL.

We all know that our insurance companies (all of them Cigna, BCBS, you name it) do not and have continually refused to cover treatment for autism. This is why parents such as myself have had to work so hard to get autism coverage insurance mandates passed in our individual states. The excuse of the insurance companies is that it will raise premiums. Well, my thought is that it would cut into their profit. Then I have to ask myself, are they so blind and so inept that they are not able to do the simple math and realize the long term monetary consequences to our country if our children and civilian children with autism do not get the effective treatment they need and deserve. I assure you, it will last for generations, and will run into the trillions of dollars.

The only logical reason I could think of as to why the academy would refuse to endorse with no discussion of possible re-drafting, is that the academy receives funding from insurance companies. If the academy does receive funding and endorsed an insurance issue (especially one at the federal policy level) that was in direct conflict with the thought process of funding agency, well, I think it's safe to say that funding would be no more.

So I ask you - does the American Academy of Pediatrics receive funding from any type of insurance company, whether directly or indirectly. The time has come for the academy to be completely transparent to the public and especially to the autism community.

I would ask that you provide me with this information no later than tomorrow afternoon. I am also a writer and am working on an article regarding the military coverage for our children with autism and I have a deadline of Friday for publication. If I do not hear back from you I will only be left to think and believe that my reasoning behind the refusal to endorse is correct.

I appreciate your quick attention to this matter.

Sincerely,
Angela Warner
A-CHAMP member
http://www.autismsalute.blogspot.com/


to

autismrr@gmail.com

date
Apr 9, 2008 4:23 PM

subject
Re: Academy Insurance Funding Question Autism, Military, Treatment

mailed-by
aap.org

Dear Ms. Warner:

Thank you for your response. The American Academy of Pediatrics has along history - since its founding in the 1930's - for advocating forhealth care and appropriate insurance coverage for all children.

Autism is an important issue for the Academy among a very long list ofdiseases and conditions that impact all children. The Academy willcontinue to advocate for further research, cures and treatments for allof these conditions and diseases that adversely impact our nationsinfants, children, adolescents and young adults, including autismspectrum disorder.

A very high priority for the Academy is to ensure that all children inwhatever venue they are receiving care have the necessary, comprehensivecoverage that those with insurance need and should have. In addition, ofgreat importance and advocacy is our commitment to address thedevastation of over 9 million children who are completely uninsured.Whether it is a child with autism spectrum disorder or a child withcancer or an ear infection the Academy will not rest until qualityhealth care is available and affordable for all. This may well put us atodds with some but the importance is a core value that you may alsoshare for your own children.

With respect to the other matter that you raised - our funding sourcesare public record. Ms. Warner, the Academy has a diverse source offunding that supports our activities including to advocate for and onbehalf of our members and the children they have under their care. We maintain that diverse portfolio consistent first and foremost with ourmission and commitment to the attainment of optimal physical, mental,and social health for all infants, children, adolescents, and youngadults.

Thank you for contacting us. While the Academy is not able to join your specific letter you have raised an issue that reaffirms our need for acomprehensive system of health care on every level - for all children inmilitary and non-military families.

Karen M. Hendricks
American Academy of Pediatrics


to

Karen Hendricks

date
Apr 9, 2008 4:55 PM

subject
Re: Academy Insurance Funding Question Autism, Military, Treatment

mailed-by
gmail.com

Ms. Hendricks,

With all due respect, you did not directly answer my question. While your financials are public record and I have reviewed them, there are many many donations you claim that are less than less than $100,000 and as such the donating organizations are not listed specifically. Those donations all together for fiscal year '06 amount to $1,372,908.00. I do not think it is an unreasonable request and expectation that the donor information for these amounts be public as well, no matter how time consuming it may be for the accounting department to list them all.

So I ask again, does the American Academy of Pediatrics receive funding from insurance companies? As I've stated, it is time for the academy to be transparent and your initial response is not forth coming.

If the academy truly has the health and well being of all children at heart, it is truly and clearly time for this to be demonstrated by the academy with loud, swift, and strong action on the part of our leaders at the academy. And you have two golden opportunities in front of you. Signing this endorsement, and sitting down with Defeat Autism Now! and getting into the research and treatment options that are recovering thousands of children from the lost world of autism.

Thank you again for your immediate action on this very urgent issue of our children's health and for your anticipated direct answer to my question.

Sincerely,
Angela Warner
A-CHAMP member
http://www.autismsalute.blogspot.com/

Autism Treatment Federal Policy! Call To Action!

Here is the quick background on this situation:

According to the Department of Education statistics 1 in every 67 children and their families is impacted by autism. You can read that report HERE. The military is no exception.

In September of 2005, the Department of Defense implemented a separate program under TRICARE called the Extended Care Health Option (ECHO). The purpose of the ECHO program was to create access to Intensive Behavioral Interventions proven to reduce the behavioral symptoms of autism.

Unfortunately, the ECHO program did just the opposite. Military dependent children with autism have been cut off from these medically necessary therapies for over two and a half years. ECHO has prohibited children with autism from receiving continuity of care across duty stations. Data indicates that only 5% of military children with autism have received some level of help through the TRICARE ECHO program. It is unacceptable that 95% of our most vulnerable military population have been forced to go without care. Lack of effective services has taken its toll. Our families are reaching crisis state. ECHO has also negatively impacted combat readiness, retention, and most importantly the physical and mental well being of our military families.

In response to parent and service member led advocacy for change to ECHO policies through legislation; TRICARE has announced the DoD Enhanced Access To Autism Services Demonstration. Families have been awaiting the arrival of this program to improve access to the medically necessary treatment our children require. Sadly, the new demonstration project misses its proposed target to ease access to care and creates additional barriers to care; some of which border on discrimination.

WE NEED CHANGE!

The below letter of endorsement I put together ("with a little help from my friends" :) which has been sent to all of our national autism organizations. For the purpose of this posting Autism Salutes, and on Age of Autism; (will run on 03-17-08) the term AUTISM COLLABORATION means every single child, adult, and parents of children and adults with autism spectrum disorders, medical professionals, teachers, and therapists who work with children and adults with autism, and of course, autism advocates.

Here are the changes that need to be made to existing policy:

Dr. Robert Gates
Secretary of Defense
1000 Defense Pentagon
Washington, DC 20301-1000

Dear Secretary Gates:

On behalf of thousands of military parents who have children with autism spectrum disorders; we write asking the Department of Defense (DoD) to work in a leadership capacity supporting and reimbursing for the numerous therapies applicable to the treatment of autism spectrum disorders.

The Autism Collaboration is comprised of the longest standing autism organizations devoted to research, support, advocacy and treatment for children with autism and their families. The Autism Collaboration knows that when TRICARE policies are further reviewed and revised, these further revisions based on our recommendations (below), and that of many others which you’ve already received will have the potential to effectively help thousands of families and children with autism in the short term. In the long term, further revision of TRICARE policies, and the DoD Enhanced Access to Autism Services Demonstration will serve as a model for other insurers and health plans to emulate.

While the Center for Disease Control (CDC) reports that the number of children with autism is currently 1 in 150; the Department of Education statistics show that 1 in 67 children are impacted by autism. The American Academy of Pediatrics has recently issued a policy of early diagnosis and early intervention. Early diagnosis does absolutely no good if children with autism are not able to receive early treatment. An ounce of prevention is worth a pound of cure and that old adage applies to treating children with autism as well. It is estimated that over the course of a life time it will cost anywhere from 3.2 million to 5 million dollars to care for a person with autism. It is currently estimated that there are between 250,000 and 500,000 children with autism in the United States, and the number of children diagnosed with autism continues to grow every year. And America thinks the war in Iraq was expensive! If left unchecked, the autism epidemic will prove far more costly, and will do so for several generations to come.

Autism is treatable and children with autism are actually recovering, but when treatment is delayed the effectiveness of treatment is significantly diminished; thus the increased and real possibility that a child with autism will need life long care. It is time for DoD to work in a leadership role which will benefit children with autism, families, and the long term financial health of our country.

With over 75 years of experience in successfully providing answers that make a difference in treatment options for autism, the Autism Collaboration brings to your attention the following recommendations. It is when these recommendations are acted upon and implemented; DoD and TRICARE will be demonstrating leadership in the treatment of children with autism.

INSERT: I'm sure it's safe to say that we as parents, medical professionals, teachers, therapists, and advocates have hundred's of thousands of hours of combined experience, if not millions, or possibly billions? How many years would that be equal to??? It is time for our politicians and military leadership to start listening to The AUTISM COLLABORATION, and The AUTISM COLLABORATION!!!


AUTISM COLLABORATION Recommendations:

DoD revise the Code of Federal Regulations to recognize the medical necessity of treatment for autism spectrum disorders. Treatment for autism spectrum disorders is medically necessary to treat a neurological disorder and necessary to prevent future physical and mental injury to the patient.

Treatment for autism spectrum disorders should include the following care prescribed, provided, or ordered for an individual diagnosed with an autism spectrum disorder by a licensed physician or a licensed psychologist who determines the care to be medically necessary: Habilitative or rehabilitative care, pharmacy care, psychiatric care, psychological care, speech therapy, occupational therapy, physical therapy, and any care for individuals with autism spectrum disorder that is determined to be medically necessary by the beneficiary’s physician.

Habilitative and rehabilitative care should include professional counseling and guidance services and treatment programs, including Applied Behavior Analysis and related structured behavior programs that are necessary to develop, improve, maintain, and restore to the maximum extent practicable, the functioning of the individual with autism spectrum disorders. Applied Behavior Analysis and related structure behavior programs are not special education and this categorization requires correction.

DoD, TRICARE, and ECHO policies need to include specific language pertaining to the exact diagnosis, and include all categories of autism spectrum disorder under the umbrella of Pervasive Developmental Disorders in the DSM-IV.

When a child is diagnosed with an autism spectrum disorder, eligibility and enrollment of the child into ECHO needs to be physician directed, automatic, and seamless. The enrollment process as it is now, serves to second guess and scrutinize physician recommendations and the treatment needs of children with autism.

Eliminate the arbitrary monthly cap of $2500.00 of covered treatment. The Demonstration has reduced the rate of payment to providers in order to maintain this cap. This reduction in rate to maintain the cap provides little incentive for highly educated professionals providing therapies to become TRICARE providers. This is not to the benefit of children or families. There is no other health condition a child may have that has a monthly cap on the dollar amount of services a child can receive.

Eliminate the requirement of a clinical review of each child’s diagnosis and treatment plan. The child’s treatment plan should be directed by his or her physician and the provider of specific services rendered, not TRICARE. Submission of an IEP/IFSP is not necessary if treatment is physician and provider directed, thus reducing paperwork and ECHO program overhead.

Eliminate the requirement of children under the age of six to undergo IQ testing. There is no other disability in which any insurance or health plan requires a child to score a minimum of 35 on an IQ test before medically necessary services will be provided and covered. Furthermore, as ECHO currently covers IBI as a “special education” service; it would be a violation of federal law for public educational services to be denied to a child with autism who might score below 35 on an IQ test. The AUTISM COLLABORATION is very concerned about this requirement as it appears discriminatory, and would be considered such in California as it is against the law to require IQ testing for African American children.

Given that the American Academy of Pediatrics recommends that children begin intensive intervention as soon as the child is diagnosed; there should be no age requirement for enrollment. Enrollment should happen immediately upon diagnosis.

The current ECHO respite benefit is unavailable to most families due to the current policy restricting access to this vital service as well as the current $2,500 financial cap. It is unethical to force parents to choose between treatment for their child and respite care. Respite care is vital to the physical and mental well being of those parenting a child (ren) with autism.

The AUTISM COLLABORATION is aware that, the current ECHO program has and the Demonstration project will continue, to interfere with combat readiness and military retention. The DoD has a moral and ethical obligation to the United States of America to provide the treatment and care that military dependent children with autism desperately need. The Department of Defense needs to set the standard for treatment and care of children with autism, and in doing so continue to protect this great country of ours.

We thank the DoD for the serious consideration and action you will take based on the recommendations of the AUTISM COLLABORATION.

Very Respectfully,

The AUTISM COLLABORATION
Alright everyone... let's go... Call to action! Comment, suggest, and endorse away! Our kids need some help - let's get them the help they need and deserve! If you want to go further than just commenting here and send a letter to your own Representative, Congressmen, or Senators, you can get the needed contact info by visiting HERE. Feel free to use all or any portion of the above letter in telling them what needs to be done to help our kids. Thank you all! And future THANK YOU's to any of our wonderful national autism organizations who are willing and/or able to sign on! YOU! the autism organizations AUTISM COLLABORATION have enabled soooo many of us to not only seek out and get the treatment our children need, but have set an example and supported us in our own advocacy efforts.
Thank you from the bottom of my heart.
Angela Warner (Ang)