It was tricky getting his other services going again - getting back on the schedule for OT, and getting his short-term aide back in the classroom. In fact, the original aide he had (who was awesome) had been reassigned in the week we were gone, so we got a new one. Who sucked. So we got a new one. Who also sucked. Unfortunately, we ate up the rest of our allotted hours from the school district on sucky aides. But that's another blog post for another time.
Within a few days of getting settled back into our regular routine, I began to prepare my Level 1 appeal. The first thing I had to do was get a copy of my Plan (Summary Plan Description for self-funded plans). This proved more difficult than I thought, as my HR people sat on my request until I found out that it was my legal right to have a copy. When I highlighted this fact I received it right away. This first appeal was based entirely on the fact that Aetna had told me that we would be covered. I included copies of my handwritten notes from both of my phone calls. I included the notes from the lovely woman at UCLA from their phone call with Aetna. I included copies of the letters from my Senator and my Congresswoman. I asserted that since they told me we would be covered, then they needed to stand by their word. I called to make sure they received it. Then I called every few days to check on the status. On the 15th calendar day, which was their deadline according to my plan description, I hadn't received a decision. I called them to tell them they were in non-compliance with my plan and I was entitled to a response to my appeal immediately. I then found out that I could call the Department of Labor for assistance (for self funded plans. For state-regulated plans, you would call the DMHC). So I called them and they actually gave me the name and phone number of someone at Aetna that I could call directly. So I did. I received my response to my appeal within 24 hours.
It was a denial.
They had pretty much copied and pasted my initial denial word for word. Denied based on an "exclusion for services related to developmental delays".
This is where many parents stop. And that's what the insurance companies are banking on. I heard that only 10% of initial denials are appealed. The percentage of Level 1 appeals that go on to Level 2 appeals are a fraction of that. So if you do the math, it's in the insurance companies' best financial interest to deny, deny. Well, I'm in that fraction of a fraction who went to Level 2.
This time I had to find a different angle. A LEGAL angle. I discovered in my research that a self-funded plan is not bound to the state parity laws, so AB 88 (pretty good parity law in California) couldn't help me. Self-funded plans are governed by ERISA (Employment Retiree Income Securty Act) which was enacted in 1974. That's before I was born, and WAY before Autism was the epidemic it is now. But no matter, I started digging. I found a couple legal cases I thought sounded relevant, and there was the new Federal Parity Act that might lend some weight to my argument. So with the help of an extended family member who is in a related legal field, and a wonderful ERISA attorney in Salt Lake City whom I was fortunate to be introduced to by that extended family member, I crafted the appeal letter below and crossed my fingers. I first sited the Federal Mental Health Parity Act, which basically says that if a plan offers a certain service, like Occupational Therapy for example, for a medical condition, then they have to offer that same service with the exact same copays, visit limits, etc. for a Mental or Behavioral Health need. Next, I attacked their definition of Autism as a developmental disorder by siting a legal case that I found online - Wheeler vs. Aetna. And just for good measure, my attorney threw in Kunin v. Benefit Trust Life Ins. Co. which defines autism as a medical condition not subject to mental health coverage limits.
15 calendar days went by. I followed up with phone calls, but every time I called, their "system" didn't show anything. It had now been about three months since Michael's first day at UCLA. Three months of internet research, phone calls with attorneys, the Department of Labor and anyone else who might have a friend of a friend who might be able to help. Three months of drafting appeal letters and re-writing them over and over and second-guessing myself. Three months of passing UCLA on my way to work every single day wishing I could send my son back there. Three months of Michael asking when he could go back to "the school with the big cubby".Attn: Appeals DepartmentRE: Appeal #XXXXXXXX
To whom it may concern:
This letter is to serve as a Level 2 Appeal regarding coverage for my son, Michael, for treatment at the UCLA Early Childhood Partial Hospitalization Program (ECPHP) at the Resnick Neuropsychiatric Hospital.
In addition to the facts I provided in my Level 1 appeal (attached), incorporated herein by reference, please consider the following.
Your exclusion of coverage for autism violates the federal Mental Health Parity Act. The plan's exclusion of educational services, developmental and learning disorders as applied to autism is a non-quantitative treatment limitation that restricts our access to medically necessary mental health coverage for Michael. Please provide me with information that demonstrates this exclusion is or has been applied to limit coverage by the plan for treatment of medical or physical conditions in the same way you are applying it to limit coverage for Michael's autism. If you cannot identify medical or physical conditions for which this exclusion has been applied, I believe the exclusion cannot stand and I ask you to authorize payment for Michael's treatment for his autism.
Furthermore, the argument that Aetna has asserted in this instance to deny coverage for Michael’s care is that somehow the plan’s exclusion for coverage of developmental disabilities trumps the plan’s explicit coverage for medically necessary mental health coverage. Aetna has been sued for such a determination in federal court on this precise issue involving an ERISA plan, and was determined to have acted arbitrarily and capriciously in so doing. In Wheeler v. Aetna Life Ins. Co., 2003 WL 21789029 (N.D. Ill. July 23, 2003), an Illinois federal court held that Aetna violated the Employment Retirement Income Security Act (ERISA), 29 U.S.C. §1001 et seq., by arbitrarily and capriciously denying coverage for a boy with autism and developmental delays. See the attached decision. Because the plan delegated to Aetna the fiduciary responsibility and discretionary authority to interpret the plan's terms and determine eligibility for benefits, the court's review was limited to determining whether the denial was arbitrary and capricious. This is a very difficult standard for a plaintiff to satisfy and informs how obviously unsupported Aetna’s decision in this instance is.
In Wheeler, the court held as follows:
We interpret the terms of the policy “in an ordinary and popular sense as would a [person] of average intelligence and experience.” Phillips v. Lincoln Nat'l Life Ins. Co., 978 F.2d 302, 308 (7th Cir.1992). Ambiguous terms in an insurance contract are strictly construed in favor of the insured. See id. Accordingly, we find that the “developmental delay” exclusion is inapplicable to developmental delays caused by autism. This reading is the only reasonable reading of the plan and comports with the plan's own definition of autism. Defining autism as a developmental disorder, but then excluding treatment for developmental delays caused by autism, would in effect render the provision for coverage for autism meaningless.
What is most remarkable about the facts in Wheeler is that they are so strikingly similar to those here. As in Wheeler, Aetna originally asserted coverage and then after services began to be provided changed its mind using the exact same rationale. The court in Wheeler closed its decision on this issue with the following: “Defining autism as a developmental disorder, but then excluding treatment for developmental delays caused by autism, would in effect render the provision for coverage for autism meaningless.” While not involving Aetna, a similar decision under ERISA appears in Kunin v. Benefit Trust Life Ins. Co., 898 F.2d 1421 (9th Cir. 1990)(requiring coverage of autism under an ERISA plan as a medical condition not subject to mental health coverage limits).
I look forward to hearing your response within the next 15 calendar days.
It was now the week before Christmas. I was on my last business trip of the year. UCLA had called and left me a voicemail that there was an opening for Michael on 1/5 if we wanted it. I didn't even return their phone call, since I was sure I would be receiving my Level 2 DENIAL phone call any day. I was sitting in the airport waiting to board my flight back home with my boss on a Friday night. I saw an 866 number calling on my phone. I knew it was Aetna. I picked it up. "Hi, this is So-and-So from Aetna. I'm calling to tell you that we've reviewed your Level 2 appeal and have decided to OVERTURN YOUR DENIAL. We've already contacted UCLA and have cleared you to start the program on January fifth." Long silence. I was so in shock, I literally couldn't speak. I think I squeaked out a "thanks" before I hung up my cell phone. I then realized that my hand was clenched on my boss' shoulder, and I had tears streaming down my face sitting in the middle of Gate #27 at Oakland Airport with a half-eaten tuna sandwich on my lap. I HAD WON. This time I would get to fly home from my trip and bring Michael something much better than airplane peanuts - I would get to give him the news that he was going back to UCLA. I have to say, it was one of the best days of my life - right up there in my top five for sure! I had received my Christmas present early, and the New Year would hold a new beginning for Michael.
|Michael and Mommy on our way in for his first day at UCLA|
|Michael's "big cubby"|
|Michael's star on the wall in his classroom|
|Michael after his first day. That face was all the thanks I could ever need.|