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)