Rain and a Sunny Day

As promised at the end of my previous blog post, I told you I would reveal the results of our congressional inquiry filed last August in regards to our son, AJ, being command sponsored overseas to accompany the rest of his family. AJ has Autism Spectrum Disorder and was flagged as unfit to accompany us to England due to various complications with our potential host country.

If you are unaware of the stressful details of our case, I would encourage you to check out the following blog post to catch up:

http://familynomatterwhere.blogspot.com/2016/08/heading-into-storm-i-had-briefly.html

Without further adieu...

Navigating Tricare Overseas

The tricky part about moving from a continental US tour (CONUS) to an overseas assignment (OCONUS) is that Tricare operates completely different, almost as if two separate entities. Perhaps the most frustrating obstacle is the fact that neither party (Tricare-West vs. Tricare Overseas) knows how the other operates. In other words, all offices servicing the military and their families in America can't give you ANY information in regards to how things function overseas. You are left alone to swim in the deep end of the pool without any support-nothing even as much as a floatation device. 

If you think that a call to the overseas headquarters USAFE (United States Armed Forces-Europe in Germany) would be any more useful in helping you understand how to find a provider/therapist, you would be sorely disappointed. You will once again be shot down, because the servicing agent can't assist you until you are actually enrolled in the Tricare Overseas program, which you can't do until you are in the new host country. Really useful, right? 

When AJ was denied sponsorship, the overarching reason included "ABA therapy not available in country". We were dumbfounded by this statement! Let me explain...

A BCBA title that is required to administer ABA therapy (applied behavioral analysis) is an international certification, meaning the same requirements and testing are administered throughout the globe. The certification is interchangeable and recognized throughout the world! Additionally, there is a website registering all certified BCBA therapists along with their locations and contact information. (This website will come in handy later.) 

When looking up the UK, we found over 200 licensed and certified provider...200+! How could a medical board make such a statement "ABA not available in country."? We even had a referral letter from our current therapist turning over all care to a specified, named BCBA in England, proving that such care was in fact available abroad. 

We were also sent an email from a Developmental Pediatrician stationed at RAF Lakenheath (about 2 hours away) confirming there were recipients of ABA therapy on his base! And still...no sponsorship...

It was incumbent upon me to take matters into my own hands and learn the system for myself. We were processed onto RAF Croughton in September, and AJ was enrolled into Tricare Overseas Standard. We would acquire insurance through our servicing interface International SOS, but would receive treatment on the economy. It is important to note that ALL members of our family would be obtaining medial care on the economy through a local GP (general practitioner), not just my son. We were told that our governing base was not suited to treat children with special needs such as AJ's. HA! They weren't suited to treat ANY of us, including my husband, the active duty member. 

It was explained to us by the Tricare office on base to first get established with a local GP. We were strongly encouraged to seek out a private pay GP rather than a doctor in the NHS, although I'm not sure why. We did as we were told and found a private pay physician. This was all necessary in order to receive a referral for ABA therapy for my son. His current referral from America would not be applicable. As I said, two separate entities. Once we received a referral for ABA, we were to submit it to I-SOS for authorization and treatment. 

Here is the tricky part, no one knew if there were any ABA providers in-network. According to our denial, there were NONE! However, it is entirely possible to become a Tricare provider. We were instructed to call I-SOS after we found a therapist we liked. If they were in the system, then the referral would push right through. If they were not, I-SOS would need time to process background and certification checks and would quickly authorize treatment as long as all their checks panned out. Pretty straight forward according to the Tricare office. I felt very optimistic of our way ahead!

I first telephoned an organization called Child Autism UK to see if there were any available therapists that would take us on as clients. I had already been in contact with them while still in America, and they assured me they had certified BCBA's on staff and did provide ABA in our area. After having an in-depth conversation, it was evident that their prescribed methods would not be within the bounds of Tricare approved treatment. 

I then called the BCBA that my original therapist referred us to and asked if she would be willing to provide ABA therapy. She was still in the process of getting her spousal visa and was not allowed to work in country yet, therefore, could not be affiliated with an insurance company. I was running out of ideas. My game plan at this point was to hunt down every BCBA within a 2 hour radius of us that would be willing to become a network provider of Tricare. 

After speaking with I-SOS directly, they informed us the process of becoming an in-network provider was far more rigorous and timely than the Tricare office had described, but not impossible. At this point, what choice did I have but to keep searching for a therapist patient enough to endure the military insurance fiasco? 

Our GP would only write a referral to a specific person, not a general referral for ABA therapy. The pressure was on and the stakes were high. I had to find someone, and I had to find them quickly! 

I followed the prompts listed on the I-SOS website in order to find a local practitioner. Surprise; surprise...no listed ABA therapists in their summary of providers. However, I came across a list of physicians for specialized treatment. It wasn't a big list so the 4+ names didn't go unnoticed. 

I went back to the registration website to look for BCBA therapists and started MapQuest-ing all of their locations in relation to my home. Anyone within a certain radius got an email from me asking for arrangements. By page 4-5, I stumbled upon a name I recognized from the list of network providers on the I-SOS website! NO WAY! She wasn't only a doctor, she was a BCBA! I immediately took down her details and swiftly sent out an inquiry for her services. I thought, "If she is on there, what are the chances the other names are on there as well." Sure enough, another provider was listed on the register and her company hosted 8 BCBA's all approved under Tricare. Another email and voicemail quickly sped out to her contacts. 

So began the wait...

Both therapists contacted me almost immediately and would both welcome me onto their patient list. They were both familiar with filing claims through Tricare and the ECHO program that would pay for their services. Had I slipped on a banana peel? Was this real life? Had all my problems been resolved? 

We selected the provider that would best suit our needs, our GP wrote the referral, Tricare approved the initial assessment and the treatment plan. I am pleased to say that as of last month, AJ is receiving the U.S. prescribed treatment for ASD in Europe! Make that one GIANT check mark next to denial reasons for sponsorship!

British School Systems and EHCP

Another motivator for denial from USAFE was Croughton's school's inability to accommodate AJ's IEP. (individual education plan). This was remedied with a little homework and speaking to the head of the Oxfordshire County Council. They were quick to proclaim they had all necessary means of successfully providing the suggested measures documented in AJ's IEP. The rules for school placement for an OCONUS move had enough room for interpretation that the Special Needs Education Advocate Office in Japan made a full recommendation that AJ be allowed to receive his education needs in the local area as opposed to the government school on base. She changed her position to reflect him as qualified to PCS with approved sponsorship.

If you remember in our original denial, his school placement was the standing reason he would not be command sponsored. After submitting the rebuttal addressing this issue, our second and final denial came through stating "no ABA in country" as the reason for withheld sponsorship. The denial letter had strongly suggested that we were doing our son a disservice by enrolling him into a British school and would potentially cause him harm and significant regression in his scholastic abilities. We were warned that British schools were subpar in regards to the assistance administered to kids on the spectrum. 

They had changed the reason for his denial, without the allowance of a second appeal, and they had shamed us as parents in making decisions in the best interest of our child. They used fear mongering tactics to persuade us to either not bring AJ or refuse the assignment, two unthinkable suggestions. Hence the reason for our congressional inquiry...not just in the ruling regarding our son, but in the process in which EFMP families are treated and the means by which PCS determinations are carried out. In no part of this process were Aaron and I ever consulted or contacted except by the paperwork that followed our appeal process. 

But let's have a look at the reality of AJ's experience in a British school...

AJ is thriving! He is allowed to be in a classroom with peers his own age even though the curriculum is far exceeding that of an American school. His age would suggest that year-2 is the equivalent of 1st grade in America, but these kids are doing multiplication, reading novels, and writing book reports in cursive. I'm pretty sure my first grade experience entailed me learning to read, write my first and last name, telling time, and addition/subtraction among other things...but not anywhere close to the requirements of this year group. 

I will admit my hesitation at first when we enrolled AJ. I cried. I cried a lot. I thought, "He will never be able to do the things that are being asked of him. He is going to fall through the cracks. He will never keep pace; he can barely read and write!" Needless to say, the room spun around me and I felt completely out of control. His teachers assured me it didn't matter where AJ fell in his abilities. They would welcome him into their classroom and take him as he is and help him move forward. They would design an entirely different curriculum just for him and have an aid assist him as much as he needed until they could better grasp where his abilities and strengths lie. They stressed their desire to more adequately provide peer relationships with AJ in his own age group rather than drop him a grade simply to accommodate his educational needs. In other words, they would rather exhaust the manpower to teach AJ individually among his peers than drop him an entire grade level. 

It was evident after 6 weeks that AJ needed additional assistance in the classroom. Having two aids assisting a whole classroom would not allow for the demands of AJ's private curriculum. We thought for sure that would mean AJ would be allowed to fall back a grade. Nope. The school hired on two individuals ON THEIR OWN DIME completely devoted to helping AJ in and out of the classroom. Every day I get a report from his aids and it is so evident to me how much they care for and nurture AJ's development. He is their STAR! The school's Special Education Needs Coordinator (SENCO) has proceeded in developing for AJ an Education Health Care Plan (EHCP) which will only increase their funding entitlement to better assist AJ with additional services such as speech and occupational therapy at the school. 

Don't take my word for it though, let his work speak for itself. AJ is reading paragraphs at a time. I have never seen this kid devour books the way he does. His comprehension of stories and how they progress has improved tenfold. He LOVES to read! Oddly enough, that isn't even his strength. His arithmetic and science skills are the ones his teachers often brag about. They report to me his memorization of addition is so quick that he rarely uses the chart aid that which most students lean on. He can just look at an equation, know the answer, and move on. AJ was recently granted in an assembly the "Gold Book" award for his hard work and perseverance in learning math and his keen attitude for a fast pace. 

His one downfall, I am afraid, is the poor kid is stuck in "CAPS LOCK". For whatever reason, AJ loves to write in capital letters. The teachers were hard-pressed to find a solution to get AJ out of this habit. With a little help from ABA supermom, they have quickly resolved his behavioral preference for capital letter writing. 

We just started receiving updates in his progress in the year-2 syllabus which can only mean one thing. AJ, in 3 months, has pushed through an entire year's worth of curriculum and has just started to move on to year-2 academics. He is catching up! His teacher told me that many times AJ is the hardest working student in their classroom simply because he has to learn twice as much as everyone else before he can move forward, but he never complains and is always "keen for more learning". 

As for the social piece, well...that is always going to be a challenge for AJ regardless of what school he attends. What I can say is AJ is well-liked among his peers. The school is a melting pot of all kinds of children. Some are fresh off the boat from Italy and speak very little English while other kids speak 2+ languages. Students in this country are far from exclusive. They accept you wherever you fall and AJ is no exception. We are met several times with "Good-bye, AJ!" and "Hi, AJ!" as we come and go from school. We have even received invitations to playdates and cards from girls in AJ's class. 

One girl came up to me on the playground and was so pleased to tell me that she got to dance with AJ in P.E. and thought it was the best moment ever! AJ is very much a part of his classroom. In fact, he was unanimously voted "best dancer" in their class during one of their dance-a-thons. 

I feel compelled to say that AJ is far better off having attended a British school during his earlier years of development. I strongly believe AJ will make leaps and bounds over the next three years, and I am anxious to see how far we can take him!

I Thought Those Meds Were Banned?

Perhaps the final nail in our coffin was the "fact" that AJ's ADHD medication was prohibited in the UK due to it being a stimulant and simply not available by regular means. However, the prescription is accessible through the Lakenheath clinic where there is a specialist available to prescribe and oversee the administration of the drug. For whatever reason, AJ would not be allowed the option to seek care for this specific cause at Lakenheath, and since the needed specialist didn't reside at Croughton (his servicing base), he would be denied. 

Let me be the first to tell you the aforementioned paragraph is entirely false. AJ's medication IS indeed available on the economy in the UK, and I have already filled two prescriptions for it! Nothing in AJ's care plan or way of life has been changed. All arguments for his denial have been sufficiently remedied:

1. ABA Therapy ✓

2. School Assistance; IEP fulfilled ✓

3. Medication ✓

Sometimes There is Rain on a Sunny Day

After reading the non-stop good news of my son's progress and achievements, you would think his case would be a shoo-in for reversal. We got the answer back from our congressional inquiry. The response would be "no". Our son would be considered unfit to PCS due to all previously mentioned reasons and the powers that be would stand firm on their previous decision. None of our hard work and attempts to address the issues of bringing a special needs child with us to a foreign country would matter. 

It was clearly evident that no critical thought had gone into the decision making process of whether or not AJ would be awarded sponsorship status. He would not. 

Living with a child on the spectrum is what you make of it. For me, it is mostly sunny in my life. Even in cloudy Great Britain, haha! AJ is the light of my life and brings me so much happiness. Every day is sunny when he is around. My life is better simply because he is in it along with all of his quirks. Sure, it isn't always easy. His schedule is demanding, his skills are still widely developing which puts greater stress on me as his mom, but it is ALWAYS sunny in my house. 

That being said, not everyone has the same opinion of my son as I do. Some see him as only his diagnosis. They see autism and quickly lump him into a category. They don't see him for his personality, for his characteristics, his strengths, his attitude. They only measure him by what it will cost to have him around. 

Certainly, this news came in as a severe disappointment. Sometimes life rains on my parade, but it is always sunny, because we know better. I have never been so glad in my life as I am right now to say, "Sorry, USAFE. You were wrong." 

What Now? 

Aaron reached back to the original congressman's office that had filed the inquiry and again stressed the developments that had been gained during our time spent overseas. She felt that maybe the results hadn't been properly up-channeled, therefore, the decision wasn't determined with all pertinent information present. She encouraged us to talk directly with the EFMP office on base and see if any headway could be made from our end. 

Aaron did just that! Their empathy was clearly intact and resided with our thoughts of approval. However, they were not the decision-making party. The MPF (military personnel flight) are the ones that handle PCS details. 

Aaron phoned MPF immediately. We now have been instructed to go through the complete application process again, starting from scratch, this time with current letters from our present providers (ABA therapist, GP prescribing medication, and proof of EHCP and aid from school) and see what the results would be. 

There is still hope on the horizon, and we plan to do everything we can to ensure that AJ receives the justice he deserves. If you think of it, don't hesitate to send a prayer or positive thought our way as we continue to tackle this great beast of ours. We would greatly appreciate it!

AJ turns 7!

As I said before, AJ brings the sunshine to my world and has now for seven wonderful years. I composed a quick video of his short albeit eventful life. Please check it out and celebrate with us our superstar son, Aaron. 

https://youtu.be/ZpG6YFJy8i8

Blessings to you all Xx,

~K