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)