“She sure is pushing this medical care grant thing". This thought kept running through my mind while I listened to the nurse at Seattle Children's Hospital on a cold and rainy January morning. I heard her say our son was diagnosed as autistic. That message was hard to miss. I also heard her stress we needed to start therapy as soon as possible. But those thoughts were pushed to the back of my mind; instead I kept thinking, "Why is she pushing medical care grants? Our insurance will surely cover whatever therapy our son needs". I was certain being a federal employee with the much-maligned "Cadillac Healthcare" meant I had nothing to worry about in terms of paying for my son's therapy. Unfortunately, I couldn't have been more wrong.
My wife and I felt run over by a truck when our son was diagnosed with Autism Spectrum Disorder (ASD). In reality, only I felt run over; my wife's motherly instincts had suspected it for a while, as I did everything I could to explain away my son's lack of development. Regardless of how we felt, we quickly resolved to follow the medical experts' recommendation and get our son into therapy as soon as possible. Not so easy a task without the right kind of health insurance, as it turned out.
I look back at it now and laugh at the phone call with our health insurance company: "Hi there, ah...my son was just diagnosed with Autism, and I was told by Seattle Children's that he needs to start Applied Behavioral Analysis (ABA) ASAP, so I'm calling to see which providers are in network." The agent replied, "Unfortunately sir, ABA is excluded from this particular coverage. However, we do support you pursuing therapy for your son, but you must pay for the expenses out of pocket." Flabbergasted, I replied "OK, I’ll read the policy again. I really think you're making a mistake, there's no way your company doesn’t cover ABA". Pretty funny right, me thinking a health insurance company doesn't know EXACTLY what it does and does not cover.
I read our policy, and sure enough, there it was in bold font: "ABA Therapy is excluded from coverage". OK, I thought, there are about twenty other plans I can choose from under Federal Employee Healthcare Benefits (FEHB), and since my wife is pregnant, we can just use that as a qualifying life event to switch to one that will cover ABA. Except there wasn't one that would cover ABA, not a single one...in the entire State of Washington. There were FEHB plans in about half the country that would cover ABA, but those in the other half were out of luck (people like us). "I'll deal with FEHB later" I thought, "right now I have to find another way to get insurance to get my son into therapy".
Besides being a Federal Employee, I'm also a pilot in the Air Force Reserves. Military Reservists are usually eligible for military healthcare called TRICARE Reserve Select (TRS), which does covers ABA. But, there was a catch: Current Federal Law states if you are eligible for FEHB then you are ineligible for TRS (still waiting for someone in Washington D.C. to explain why some Reservists like me are denied a standard military benefit). Now the military reservist healthcare option was out. We looked at buying our son his own healthcare through the Affordable Care Act, but we missed the open season. We looked at the grants mentioned by the nurse, but we didn't qualify based on income. We were left with one last choice if we were to get our son into therapy right away; I would have to deploy overseas in support of contingency operations to get "temporary" military healthcare (very complicated, we could talk for hours). I made some phone calls. I begged and made ridiculous promises I could never keep, and I had my orders to deploy in the summertime. While it wasn't my first choice to leave my wife alone for a few months with a special needs toddler and a newborn, it did mean we could get our son into therapy right away, and we were extremely blessed to have absolutely amazing family members and friends volunteer to help in my absence. Lesson One: “There are lots of healthcare options out there, and while they might initially sound out of the question, in the end, they might be better than nothing.”
So we solved the first problem of getting our son into therapy, but like I mentioned, it was only a temporary solution since the military healthcare would end six months after my return. The much larger fight was how does an individual get a federal program like FEHB to change their policy? The short answer is an individual can't do it alone; it takes a lot of help.
Like most parents who recently learn their child is autistic, you log on and start to devour the advocacy websites. Both Autism Speaks and Washington Autism Advocacy and Alliance (WAAA) were a wealth of knowledge. These groups not only provided the facts, but they do an excellent job of distilling the information into the basics so those new to the advocacy efforts could jump into the race with both feet running. I was a man on a mission. I didn't want to spend the rest of my life deploying to get the same benefits as other Federal Employees and Military Reservists, and I was willing to work night and day to get my son the healthcare he needed. I read all the articles. I read the federal and state laws. I called my friends who worked in Washington D.C. OK, I might have been a tad overzealous cold calling the Vice President of Autism Speaks, but I'm sure she has forgiven me. Lesson Two: “Find established advocacy groups to further your cause and avoid reinventing the wheel.”
After educating myself with the help of advocacy groups, I decided it was the right time to call my Congressmen and Senators. My Congressman Denny Heck's staff was great, meeting with me almost immediately. I even got the opportunity to meet with Congressman Heck personally. You would have to ask Congressman Heck, but I got the distinct impression by the expression on his face that he thought "not giving this guy the same benefits as other Federal Employee and Military members is the dumbest thing I have ever heard". With the help of Autism Speaks and WAAA, I was also able to meet with staff members of both Washington State Senators. Despite these meetings, no laws were changed, and as far as I know, Congressman Heck was the only one who wrote a letter on my behalf inquiring why ABA Therapy was not mandated for FEHB plans. Lesson Three: “Even though Government Representatives may be sympathetic to your cause, it involves a long process (measured in years, not months) with no guarantees of success”.
Finally, in attempt fix the lack of benefits under FEHB, I turned to social media. Initially, my efforts were haphazard, as I sent out a barrage emails to friends, posts on Facebook and tweets on Twitter. This effort got me nowhere, and it took my son's Godmother, Lori, to show me how to leverage social media. Lori excellently wrote an emotional blog; one that not only described my family's situation, but more importantly put a human face on this issue (you can read it here). By sharing Lori's blog with others, I was eventually contacted by a journalist who wrote an article about our family's plight, published in USA Today. Lesson Four: “Learn how to tell your story in way resonates with those unfamiliar with the issue”.
It has been a long ten months of advocating for my son. There have been way too many dead ends and disappointments along the way. But finally, I received an email last week from a FEHB provider saying that they will begin covering ABA Therapy! I don't know if all my efforts had any real effect in changing the policy, but I do know that the combined efforts of all the parents like us made a huge impact. The fifth lesson I took away from this experience was "Never give up fighting for your children".
Speaking about huge impacts, my son has been in ABA Therapy for eight months. He's gone from being almost completely non-verbal to saying “Daddy, can I have apple juice please” and “I love you Mama”. My deployment was an emotional one for my family, but upon my return, my son said, “Daddy, I missed you" to me, and could do all his ABCs, things we were told he may never do. There’s no way my son would have made this kind of progress without ABA; and while the cost might be high (upwards of $60,000 a year), Insurance companies should see it as small price to pay for helping ASD children in becoming functional adults. Therefore, the last lesson I took away is “ABA works!”