Appeal Letters, Phone Calls, and Gate #27

I came home from DC feeling defeated.  But I made it seem like a party to Michael that he got to go back to his preschool.  I was careful to not make any promises to Michael that he would go back to UCLA (because I ALWAYS make sure I can keep my promises to the little boy who NEVER forgets ANYTHING).  But we did talk about how fun it was there and wouldn't it be great if we could go there again.  Michael just wanted to have his big cubby back.

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.

SHOCKER.

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. 

Attn: Appeals Department

RE: Appeal #XXXXXXXX

11/19/10

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 (9^th 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.

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". 

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.

My battle with Aetna began 3,000 miles from home

When I received my first phone call of the day on Monday morning, I was on location outdoors for a video shoot for work in Washington DC.  And so it began.

That call was from my HR representative to tell me that Aetna was indeed denying coverage of the UCLA program.  Meanwhile, Michael was already on his way to UCLA back in LA.  I felt like disappearing.  I had NO idea what to do or who to call for help.  I felt panicked, desperate and hopeless.  We got so close we literally could taste it, and now my son's best chance of improving his future was taken away.  I got angry.  Really angry.  One of my colleagues at the photo shoot asked me what was wrong.  When I told him, he got angry too.  He told me about his dad, who is an advocate for people with disabilities in Michigan.  He asked if I minded if he called his dad.  Of course, I was open to anything.

He got his dad on his cell and told him what was happening, then he handed me the phone.  Within the next five minutes, that man became one of my angels.   He said to me "This is NOT over.  You get on the phone right now with your senator's office and your congressman's office.  You tell them this is an emergency and you need their help now.  Tell them that you need them to intervene and tell Aetna to resolve this matter immediately.  They can write a letter to the CEO.  Then you start gathering your notes from your calls with Aetna and get ready to appeal."  I had no idea I could call my senator or my congressman for such help.  He lit a fire in me that day and gave me the confidence and knowledge I needed to reach out for help and not stop until I found a solution.  I will be forever grateful to him.

I excused myself from the photo shoot, as this was a family emergency if ever there was one.  I situated myself in the grass on a hill in the DC heat, armed with my cell phone and some scrap paper I had in my purse.  I made and received 72 phone calls that day.  Many back and forth to my senator's and congresswoman's offices.  Some calls were to other advocacy groups.  Many calls were dead ends.  But I would keep dialing until I found more people who could help.  I also cold-called the benefits director at the holding company in New York that owned my company.  I called the main number I found online and kept getting transferred until I found his office.  I kept calling until I got him on the phone.  He had the power to make Aetna pay for my coverage since he managed the self-funded plan.  He refused, but strung me along by telling me that he would have Aetna look into my issue further, and to look for their notes and recordings of my calls.

By the end of that Monday, letters from my Senator and my Congresswoman had been faxed to the CEO of Aetna urging them to attend to my matter immediately.  I had Aetna "searching" for their notes, and I had gotten another 24 hour stay of execution from UCLA - they agreed to not give Michael's spot in the program to another child until end of day Tuesday.  But sadly, they asked him not to come back until we were admitted.  I couldn't blame them, so I thanked them.

At the end of his second at UCLA, Michael's dad came to pick him up.  He started clearing out his cubby and packing up his things, including the picture of Michael glued to a big yellow star that was hanging on the wall with the other four kids in the program.  Michael got upset and said "No Daddy - that's my cubby.  That stuff stays here!" Michael's dad explained that we would bring this stuff home and we might be going back to his old school.  Michael said "No Daddy!  Call Mommy.  She'll tell them I can stay!"  When I heard that from 3,000 miles away, my heart melted and I promised myself that I would not stop until he was back in that program, with his picture on that wall and his things back in that cubby, no matter how long it took.

On Tuesday, there were more phone calls, more tears, more ridiculous conversations.  I knew I wasn't crazy, they HAD told me TWICE that we would be covered.  They quoted my plan document (which I did not have a copy of) and said that there was an exclusion for "services and treatments relating to learning disabilities and developmental delays".  I asked them where it said there was an exclusion for Autism.  It didn't.  I asked them where it defined in writing that Autism is in fact a developmental delay.  It didn't.  I asked them if there was a problem with Michael's Medical Necessity pre-certification.  There wasn't.  They told me it was an administrative decision, not a medical one.  WHAT???  How could this be happening?  It was like trying to reason with a rock.  On my way back to the airport to fly home, I received the most insulting call of my life.  It was someone from Aetna who I hadn't spoken with before.  She said "Sorry for your inconvenience, but we couldn't locate our recordings since they were probably deleted, and our notes from the dates of your two phone calls were inconclusive.  Therefore, coverage for Michael for the UCLA program is denied.  But feel free to appeal."  INCONVENIENCE?!?!  I admit it, I totally lost it on that woman and my metro car driver must have thought I was completely nuts.  I continued to scream into the phone at the curb outside the airport, to the point where a police officer gave me a sideways look.  But the woman on the other end repeated "I'm sorry for your inconvenience.  I'm hanging up now."  CLICK.

I cried all the way home behind my sunglasses on my Virgin America plane.  I didn't care who saw me.  I had just failed my son and I had no idea how to face him when I got home.

To be continued...

When Aetna said NO

I'll probably go back and talk about how we came to our diagnosis, and various other battles we've had along the way in later posts.  But for now I'm going to talk about our latest battle - the hardest one I've ever fought in my life - the one when Aetna said NO.

It all started back in June, about 6 months after our Autism diagnosis, when I came across this incredible program for the treatment of Autism at UCLA.  It had a long and somewhat intimidating name: The Early Childhood Partial Hospitalization Program at the Resnick Neuropsychiatric Hospital.  Check out their website here. It sounded like exactly what we needed.  But the waiting list can be long - several months to a year or more.  I decided to give it a shot.  During our application process, the woman at UCLA (who has come to be one of my favorite people on Earth) recommended that I call my insurance company to see if they had any exclusions for Autism.  She gave me a list of specific questions to ask.  I called Aetna and asked them if my self-funded plan had any exclusions for Autism, and they said no!  They went on to say that the program at UCLA was indeed covered as a contracted provider and it would be covered as outpatient.  All I had to pay was my co-insurance.  Hooray!!!  Now all we had to do was wait.

About two months later, way sooner that I expected, UCLA called to tell me they had an opening for Michael.  It was like a dream come true.  I called Aetna again to confirm that we would be covered, and they said we would be.  So we made quick arrangements to pull Michael out of his current preschool and put all of his other services that we were getting through the school system on hold. 

Let me stop here for a minute.  As anyone with a child with Autism knows, any minor change in a daily routine can throw the child into fits.  So just think about the fact that we were about to throw Michael's world completely off its axis with a new school, new people, new schedule, longer hours, harder work and even a new sleeping schedule.  I was nervous, but I knew in my heart that this program was the best thing for him.

So off we went to our first day at UCLA.  It was a Friday at the end of August.  I remember walking through the doors of the hospital thinking that this would be the first day of the rest of Michael's life.  A bit cheesy, I know, but that's how lucky I felt to have the opportunity to take him there - the place with the fish tank with the "Nemo fish" that Michael fell in love with, the place with the smiling, welcoming staff, the place with the sympathetic and supportive parents of the other kids, and the place with the vast team of trained professionals who would be treating my son with no restrictions from budgets or allotted hours or ulterior motives.  He would be getting unbiased treatment with approaches and goals created and tailored specifically for Michael's needs.  It was Heaven on Earth.  

After we dropped Michael off in his new "classroom" and put his things in his new extra large cubby, we sat down for the next three hours with the clinical team for our intake interviews.  We talked about his medical history, his challenges, his strengths, his goals and his needs.  Then we headed to our car for a lunch break before we had to pick Michael up at 2:00.  That's when we got the call.  UCLA called to tell me that Aetna wasn't approving Michael's admission.  There had to be some sort of mix-up!  I had pages of notes from my two separate calls with Aetna saying we would be covered with no exclusions.  However, when UCLA called Aetna to complete the admission paperwork (when Aetna found out how expensive the program was) Aetna was now claiming that he wouldn't be covered under an exclusion in my plan for "developmental disabilities".  NO WHERE in the plan did it state an exclusion for Autism.  But they had decided that Autsim qualifies as a developmental disability. 

I called my HR Benefits Manager at my company in a panic.  He assured me that they would get it cleared up, and to go ahead and send Michael back to UCLA on Monday.  I didn't sleep that entire weekend.  Sunday night, I had to fly to Washington DC for a business trip.  On Monday morning Michael went to UCLA, while my world began to fall apart on the other side of the country.

To be continued...

Just Another Mother Warrior

My name is Christy, and I'm just another mother warrior - one among thousands - fighting for my son who has Autism.  It's been almost a year to the day since my son was diagnosed with Autism. It's taken me about that long to get my head above water enough to have time to start this blog. I wanted to share my experiences and information with anyone who may find it useful, comforting, informative, or commiserative. I'm not a lawyer and I'm not a great writer, but I'm hoping by sharing my story, my battles won, and the armor and ammunition I've used, I might help another mother warrior.