Heading into the Storm

I had briefly mentioned that AJ had been denied command sponsored travel in one of my previous blog posts. I wanted to elaborate on the back story to further illustrate our reasons for contacting our congressmen and to help inspire others to rally behind us:

When AJ was diagnosed with Autism Spectrum Disorder at age three, he had to be enrolled into a special program called the Exceptional Family Member Program (EFMP). The EFMP's job is to act as an advocate in your family's order placement to ensure the family member in need isn't placed into a location where his or her services aren't available. There is a subset off of Tricare called ECHO that provides payment for specialized entitlements such as Applied Behavioral Analysis (ABA) therapy which is the standard care for ASD in the USA. 

When we originally received our assignment to England, all family members were required to go through a screening process through the EFMP to ensure we were okay to be approved for travel. Everyone in our family was approved with the exception of AJ. The reasoning behind his denial not only seemed confusing, but possibly an error. He was denied for the reason of his Individual Education Plan (IEP) being outside the available care at the nearest Department of Defense Education Activity (DoDEA school) which is roughly 1.25 hours away from our residential area. We explained that we would not be living any where near the DoDEA school and wished to receive our education elsewhere closer to home. As his parents, we had already researched the process of school application and found the European schools to be highly equipped and in some cases better suited to assist children with special needs than that of our American schools. This was irrelevant. Kids traveling overseas are measured up against the nearest DoDEA school, but the regulation says they should be measured against schools within their community. You can already see the process is subject to interpretation and is more opinion based than regulation based. 

When we contacted the extension given to us in regards to questions concerning our denial, we were met with a host of inappropriate responses to include calling Aaron's professionalism and integrity into question. Not only was that both upsetting and insulting, but an indication of the illegal behavior denying parents their right to be involved in the placement of their children in the school of their choice or even the option of homeschooling. The other reason for denial in the notes included that ABA was limited within the UK.

We have only one opportunity to appeal any claims that USAFE has used in the denial process. We went to work! We contacted the head of the council that is involved in children's school placement with special needs and the SENco (Special Education Needs) professional at the school of our liking and both agreed that AJ's IEP needs could and would be sufficiently met. In addition, we contacted a Board Certified Behavioral Analyst (BCBA) that agreed to meet with us and take on AJ's care. We also found a company known as Child Autism UK that is run by case managers. Their CEO agreed to help with our transition to the UK, coordinate us with one of their many certified therapists in our area, and work directly with our insurance company for billing purposes. Our appeal was reviewed by the special education liaison in Okinawa, Japan. We put her into direct contact with the head of the school council and were approved  for sponsored travel. We even received a complimentary email to put our minds at ease that AJ was approved and our homework had certainly paid off in our benefit. We were over the moon, but Aaron was still cautiously optimistic. 

A week and a half later, we were told our appeal had bypassed the EFMP office entirely and was redirected to the headquarters at USAFE. This was troubling to us as this is the traditional route of a denied appeal. We were correct. This time the denial came with a different reason. (underhanded) We had won the battle of school placement; AJ will be allowed to attend school within his community, but he was denied for reasons to include ABA not being available anywhere throughout the UK. (FALSE) ABA is not the standard of care in the UK for treatment of ASD. (TRUE, but IRRELEVANT) Kids with autism get little to no help in the school system. (FALSE) Furthermore, an additional claim was directed to our family that travel for this individual was not only ill advised, but that we needed to understand bringing our son into country would cause significant regression and much hardship for our child. (FEAR MONGERING AND SHAMING) Now our parenting was being called into question. Enough was enough! We have been successfully parenting our child for 6 years, and this felt like nothing more than a financial road block. There, now you're all caught up!

Aaron and I both felt the EFMP process and DoD regulations were flawed and outdated. As it stood, any child diagnosed on the spectrum would be denied access to government sponsored travel to any English speaking assignment in the UK. If you aren't familiar with autism, you should know it is a spectrum. It ranges from severe to mild and each individual holds their own spot on the spectrum. The powers that be have never met my son and simply cannot define him with such a blanket statement.

Our next approach was to file an IG complaint for the treatment we received in the process and to request a congressional inquiry with our congressmen from our home state of Montana (S. Tester, S. Daines, and R. Zinke). Senator Tester's support staff reached out to us first. They agreed to meet with us Weds., August 10th. The meeting went better than EXCELLENT. We received much support and felt the democratic team was very empathic to our story and request. Cheryl U. had caught fire listening to our experience, took detailed notes of our story, and requested supporting documentation to back up our claims. If my husband is good for anything, it is meticulous note taking. The man doesn't delete a single email!!! Cheryl U. agreed to start the inquiry for the Senator and get us some reach back into the process. We were thrilled and felt a small win for the autism community.

I have zero impression that this will resolve our situation. I fully expect to pay for AJ's means of transportation to the UK, acquire him a visitor visa, pay out of pocket for his ABA care, and take him to a civilian provider for medical treatment. There are other hardships that will occur because of these facts. AJ will be required to return to his home country every 6 months to reapply for a visitor visa and return to the UK on our own dime. He will not be allowed to be seen in a military treatment facility nor will he be allowed access to his stimulant medication provided only by the MTF. I have been immensely blessed with the sale of our home in the recent months and have a small fund set up to do so for AJ. That being said, the process is broken and children with ASD are being discriminated against, and an insurance company is dictating when and where a US serviceman can and will serve his country based on in-network providers. If there are qualified providers in an area outside of the USA, it is Tricare's duty to reach out and find ones that are willing to work for their payment schedule. It's wrong in the simplest of terms. Aaron and I both feel very strongly that it is our civil duty to "poke the bull" and start a conversation about the care of our servicemen and their handicapped dependents. This is bigger than us! This is a policy change that needs to happen to help protect the military child!

We made our mission very clear! We wish to: 

-change the status of our orders by opening up our EFMP case and review it based on the 239 available certified behavioral therapists in the UK

-take a closer look at the care available for children with autism in the UK

-attain in-network ABA care in the UK. That is EFMP and Tricare's job. We wish to return EFMP to a program of advocacy, not one of bureaucratic and financial roadblocks. 

-involve parents in the EFMP process

This is a picture of us outside of Senator Tester's office. You can tell we are in very high spirits!

Aaron searched to see if there were any autism committees within our federal government and discovered that Utah Representative Jason Chaffetz sits on the Congressional Autism Caucus. It was a long shot, but Aaron reached out to his brother in Utah to see if he had access to contact information to Rep. Chaffetz. He was successful and a phone call was placed. We received the personal email contact information of Rep Chaffetz and our lengthy file and documentation were sent. We received a personal email from Rep. Chaffetz in 16 minutes! Our case was passed on to Sean H., a healthcare portfolio manager for the autism caucus, and he requested a phone call with Aaron at his earliest convenience. We are still waiting to hear back for an appointment for said phone call but remain optimistic. 

Representative Zinke's support staff followed up with Aaron, read his files, and have already sent off the request for the congressional inquiry. Senator Daines should be in the reviewing stage of our files and sending the additional inquiry later this week. Again, considering the short turn around time with which we plan to leave, it is unlikely to see any change in our current situation, but our hope is to bring attention to the EFMP process and help change regulations permitting parents to be more involved in the placement process of their children. 

On another note, we went to our immigration interview for AJ in Helena on Tuesday hoping to get some revelation on how the visa process works and what is required of us to get in and stay in country once we arrive. Not only did the tech not recognize or know how to process our application, but she didn't have any insight into the process at all. I left the office in complete tears and hope had all but vanished. Sometimes, you just got to let let it out. I put the kids away and began to sob in my front seat. Paisley in true fashion informed me, "You are not a baby; you're not even a kid! You're a mom with BOOBS!" It was like I got my superpowers back, folks! 

I stifled a little giggle and said a little prayer to be directed to the information I needed to successfully keep my son with me on our next assignment. I asked to be spared any financial hardships in doing so and that certain hearts would be softened along the way. It is no coincidence that Aaron and I were simultaneously directed to a Facebook page and another website giving us instructions on what to do in this exact situation. For the first time in this whole journey, I felt a bit of peace; I felt resolve! 

The reason I titled this post "Heading into the Storm" is because I know that many times in life we will face horrific storms. We will be in the midst of darkness and raging waters. It may be tempting in those moments to give in to the storm, allow your ship to sink, and for heaven's sake "Don't rock the boat!" It's in these moments when we have to look for our Savior, for He is out on the water with his hand outstretched asking us to have faith and come unto Him. He tempers the storms; He tempers the waters. I know that this storm will eventually pass, and if my boat should sink, I won't be on it. I will be with Him. 

Have faith. ~K

Photo of Kristi & AJ copyright Hope Ann Photography.