Game Changer

Where do I even begin?  How in the world do I describe the progress that Michael has made in just 12 short weeks?  And how do I even attempt to put into words how grateful I am that Michael had the  opportunity to attend the Early Childhood Partial Hospitalization Program at UCLA?  It's taken me over two months to write this post, so I guess I'll just have to give it my best shot.

First, I'll try to describe Michael and our family before UCLA.  At school, Michael was completely reserved.  I called him my Little Turtle because he looked like he was shrinking into a shell when he sat at a table with his peers - shoulders hunched, head down, trying to shield himself from the world.  He barely talked at school.  He never greeted his teachers or peers when he arrived in the morning.  He was always the last kid sitting at the snack table, the last kid in line to wash hands, and the kid who shied away from the others during playtime.

At home he released all the stress of "holding it together" while he was out.  He could have up to 20-30 tantrums a day, some lasting up to 90 minutes of screaming and flailing around on the floor.  Things as simple as his waffle falling off his fork would send him into hysterics.  His rigidity was out of control - if anything happened differently than how he wanted it to it resulted into yet another tantrum.  If his fork was too close to his plate, if his sister made a toy car fly instead of drive, or if I gave him a red gummy vitamin instead of an orange one, we were in for a doosy of a fit.  He was even starting to get aggressive towards his 2 year old sister, and me - lashing out by hitting, kicking and clawing when he didn't get his way.  In general, life at home was exhausting.  Don't get me wrong, Michael has always been a wonderful kid - he's cute, funny, and has amazing vocabulary.  But the tough times were definitely starting to outweigh the happy times.  I even realized we'd stopped going out.  If we were invited to a friend's home, or wanted to go to an unfamiliar museum or store, I tended to decline the invitations and avoid the outings knowing that we'd likely spend much of the time "taking breaks" in a back room or heading to the car early.  The stress on Michael and on me to go out made it such that I'd rather just avoid it and stay home.

Fast forward to our life after the UCLA program...

At school, Michael now greets his teachers and peers.  He engages in play (sometimes, but we'll take it!).  He answers questions during circle time.  He's still the last one to finish his snack and the last one in line, but we're working on that.  His teachers describe him as "a completely new kid".

At home, his tantrums are down to less than 10 per week (maybe up to 3 on a bad day).  He's much more tolerant of things that are not in his control.  For example, he can deal with a dropped waffle (with some prompting), he's learning to share with his sister and tolerate different ways that she plays, and he even sits in different seats at the kitchen table.  We now have a full social calendar on the weekends.  We can have playdates at home and friends' houses without major meltdowns or hours of hiding under a table.  We've even managed to attend several birthday parties!  We can go on outings to new places (though not always without challenges, as I'll talk about in a future post about a recent trip to the Aquarium).  And we're going to attempt our first ever trip to the movies to see Cars 2 next weekend, which is something I never would have done before UCLA.

Michael has real friends now - actual connections with a few kids his own age.  I'll say it again because this was something I was afraid he might never really have: Michael has FRIENDS.  To put this into Michael's own words, I have to outline a conversation we had in the car one morning on our way to UCLA, a conversation that will forever be engrained in my memory:
me: "Michael, you know pretty soon you're going to be done at UCLA and you'll go back to your old school."
Michael: "No, I don't want to be done at UCLA.  They are my REAL friends."
me: "What do you mean, REAL friends?"
Michael: "They KNOW me.  And I like them."
This was the first time I had ever heard Michael talk about friends.  And the fact that he recognized the connection that he had made with his peers was enough to put me over the edge to tears.  At UCLA, they trained our kids on some of the basic building blocks of social skills - the kind that come naturally to typical kids.  Things like facing a peer when they're talking to you, or answering a simple question like "Do you like ketchup" with "Yes I do, do you?"  After hours and hours of this type of training, Michael had learned to come out of his shell and relate to his peers, and as a result he has been able to form true friendships.

Michael and one of his friends from UCLA

Another key for us that we learned at UCLA was that Michael was really struggling with anxiety.  Until it was brought to my attention, I didn't see it.  But once they told me what they saw it was so clear.  The poor kids was a wreck with nerves and negative behaviors as a result of that anxiety.  With the help of medication as well as some other coping skills they taught us, Michael isn't a little turtle anymore staying in his shell away from the unfamiliar world.  Which is the only way we can now venture out into the wonderful world of preschool birthday parties and even through the aisles of the new Target store.

This post would turn into a book if I tried to explain all of the skills and techniques they taught us during our 3 month stay.  But I would be remiss if I didn't talk about my Tuesdays there.  Yes, MY Tuesdays.  This program wasn't just for Michael, but for our WHOLE FAMILY.  On Tuesday mornings we had a family intervention session with the behaviorist where we brought Maya and Michael, plus me, their dad and even their nanny so we could replicate some of the situations we were struggling with at home and learn new techniques to help cope.  After that, I went to the parent support group - my favorite time of my week!  We learned from each other, made each other laugh, cried on each others' shoulders, and made some friends for life.  It was an amazing experience going through this program - sometimes overwhelmingly difficult, sometimes triumphant, and always educational.  Getting to share all that with a handful of other moms (and dads) going through the exact same thing at the exact same time was an experience I will treasure for the rest of my life.  (Thank you Laura!)  After parent group, I had time reserved to observe Michael through a one-way mirror.  During that observation time I was able to see how Michael was without me in the room, how he responded to certain things the teachers did with him, how he responded (or didn't respond) to his peers.  It was time for me to reflect on the progress he was making, and the areas we had yet to work on.  I wish every classroom from now until graduation had an observation room :-)

So, all in all the ECPHP program was a godsend for Michael and our family.  But I have to say it isn't a cure for autism.  One of the "veteran" moms told our Tuesday group this very thing on my first day.  She said, "You have to realize that this program is amazing, but you won't be leaving autism behind when you leave here."  Won't be leaving autism behind.  Those words hit me surprisingly hard.  I hadn't realized until I heard her say them that deep down I was hoping that we would.  But the reality is that autism is a journey, a marathon, a long-term commitment.  Call it what you will, the point is that it can't be erased during a magical 12 week period.  No matter how much we wish it to be so.  No matter how much it may seem possible since the whole staff at ECPHP seem to be miracle workers.  But in the end, we walked out of there with the education, encouragement, enlightenment, confidence and skills we would need to continue on our journey.  And we are all forever changed for the better for it.  It's been a true game changer for all of us.

Good luck, and all my love to every family in the program now, and every family who will be fortunate enough to participate in the future.  And thank you from the bottom of my heart to everyone at ECPHP.   I miss you all!

Lights, Camera, Action!

When UCLA asked me if Michael and I would be willing to be filmed for a local news segment about the ECPHP program and the Neurology Study he's participating in, I automatically said yes.  It is, after all Autism Awareness Month and I'm happy to do anything I can to help raise awareness of autism and the research that is needed to help our kids.  Besides, Michael LOVES when he gets to wear his "net hat" and see Amanda in the neuro lab.

On filming day, I was a NERVOUS WRECK.  I can talk about autism all day long, but when someone was going to ask me questions about my personal experience with Michael's autism on-camera, I knew I'd inevitably tear up.  Which I did.  And they totally used a clip of my tearful footage in the promo for the piece that played before the commercial break.  Up next: sobbing mom and a kid with a weird contraption on his head. Stay tuned.  Hey, whatever makes people tune in I guess.

Michael was amazing throughout the entire two and a half hours of filming.  At first, when it was time for him to have the net put on, he resisted, and I momentarily panicked.  But I pulled out my trusty mommy purse filled with distractions and treats and he had it on a few minutes later.  He had to sit in front of the testing screen hooked up to the electrodes for quite a while.  He got antsy and kept saying "Mommy, when I say THREE we'll be done."  "I'm gonna say three soon."  "I'm about to say threeeeee."  Luckily, he never actually said "three" and he finished the filming with flying colors.  He didn't understand why the camera was there, but he thought it was a pretty cool contraption.  And later when he saw the segment on our TV he exclaimed, "Hey - that's MEEE!!!"

I'm so proud of my little man.  For being so good on filming day.  But mostly for all the hard work he's put in and the amazing progress he's made in the last four months.  He's MY HERO.



The segment aired on CBS Los Angeles on the 11:00 news on Wednesday night 4/20/11 and again on KCAL 9 the following day at noon.  You can see the video and comments on the CBS website here.

Zoloft and Bouncy Houses

Until recently, our lives were limited by Michael's anxiety. The poor kid was afraid of everything - bugs, escalators, new places, new people, tall play structures, freeways, airplane jetways - you name it, he was scared of it. We had a hard time going to malls, parties, new parks, etc. Michael was even petrified of bouncy houses. When he was near one his whole body would tense up. He would shake and scream, and we'd have no choice but to leave. The noise of the blower and the happy kids combined with the hugeness of the structure were simply too much for him to handle. Whenever we went to a party that had one, and almost every kids' party in LA has one, we either had to keep him out of sight of one, or we had to avoid them altogether.  His anxiety became so bad that he just looked stressed out 24 hours a day. His shoulders were raised, his fingers were twisted, and he kept his head down. Even his speech was labored. When Michael was being potty trained about a month ago, his anxiety went over the edge. It became apparent to me that his life, and the whole family's life was impeded on a daily basis. Michael's tantrums and non-compliance at home even began to become more aggressive. He was lashing out with his fists.  It was time to do something about it.

I had always avoided the thought of medicating Michael. But months of intensive behavioral interventions and systematic desensitization weren't solving the problem.  So with research and the guidance of Michael's doctors at UCLA, we decided to give Zoloft a try.  It was a bit of a long-shot.  SSRI's only work in about 30% of kids Michael's age, and even less in kids with autism.  But we figured it was worth a try.  We started at a very low dose on a Wednesday.  By Friday, Michael looked like a different kid.  His shoulders were relaxed, he had more eye contact, and he had markedly less general fear throughout his day.  Even his tantrums reduced in severity.  His teachers and therapists who were blind to the med trial noticed a definite change in him.  But I wasn't convinced...yet.  That weekend we had plans to go to a birthday party where a bouncy house was the main attraction.  This was going to be my test. 

We arrived at the party and I prepared Michael for the fact that there would be a bouncy house.  He said "ok" and walked into the house.  We went to the backyard where he seemed unaffected by the sounds of the blower and the laughing children bouncing inside.  He was timid at first, playing just outside the bouncy house in the yard for the first couple hours.  But as some of the kids left the party and the bouncy house became less crowded, Michael ventured inside with his dad.  He sat inside gripping the floor of the house, but beaming with pride.  Daddy made an excuse to leave the house and before long, Michael started jumping.  I couldn't believe it.  After years of being terrified of these things, Michael was bouncing with glee!  Through tears of joy and disbelief, I captured this video on my iPhone.

Once Michael started bouncing, we had a hard time getting him to stop.  On our way home in the car, Michael asked with such excitement he could hardly help but to yell "Mommy, can we have a party for me with a Spiderman bouncy house?!?!?"  Oh, I'm SO planning a summer BBQ with the biggest, bounciest Spiderman bouncy house I can find!

Our life with Zoloft is definitely a happier life.  We've had weekends filled with parties, and trips to the mall complete with escalator rides.  Michael is now happy to greet friendly strangers in elevators and  grocery stores.  The stressed out, tensed up Michael is a thing of the past.  He greets me at the door when I get home from work, buzzing with excitement to tell me about his day.  He's found his sense of humor, and is now the goofy kid at school who makes the other kids (and teachers) laugh, when he used to be the quiet scared kid who didn't talk much.  He is a little more "hyper" now and has had a touch of insomnia, but I'll take it!  He's not afraid of the world anymore, and he's so much more receptive to the therapies and interventions he's receiving to help him learn things like social communication and comprehension skills. 

I'm so grateful that we've found yet another piece to fit into this puzzle that is Michael's autism.  And we're so lucky that it worked for us. 

The membership I never wanted, but can't live without

"Welcome to the Autism Community."  I found myself saying these words to a new mom I met recently and I realized I'd heard them before.  Another mom had said these words to me at my first TACA meeting a few short weeks after diagnosis over a year ago now.  It was an oddly reassuring feeling to be welcomed into a community that up until then I hadn't even realized existed, let alone ever imagined myself becoming a part of.

Being a parent of a child with Autism is like having a membership to an exclusive underground club.  No one on the outside can really know what it's like without experiencing it for themselves.  But once you're in, the immediate feeling of camaraderie is palpable.  It's like we have a secret handshake and speak our own language.  At every meeting, every parent support group, every event, and on every online Autism forum, I meet more and more members of the Autism Community - newbies and veterans, parents and professionals.  There are people who support me, commiserate with me, educate me, laugh with me, cry with me, inspire me and listen to me when I just need to vent.

I am so thankful to everyone I've met along the way, and continue to meet every day.  I couldn't cope, and definitely couldn't be as productive as I sometimes manage to be on behalf of my son without my membership to the club that I never knew I wanted and now can't live without.

IEP Meetings for Mommies (and Daddies)

Someone should really write "IEP Meetings for Dummies".  Of course, we're not dummies, but mommies and daddies.  But I sure felt like a big fat dummy before my first IEP.  So here's what I've learned so far.

IEP meetings, especially your first one, can be extremely daunting and intimidating, so I wanted to share some of the best advice I got from other parents before going to my first one.  I remind myself of these pointers every time I have another IEP meeting.  BTW - I'm still a novice at these - I've only had two so far and I'm preparing for my third which will be my transition to Kindergarten IEP.  Yikes!

Disclaimer alert: I'm not an attorney or an advocate, and everything below is based on my experiences as just a mom who learned from a bunch of other moms and took a few notes along the way.

Before the meeting:

• Request a copy of all assessments to be sent to you a week before the meeting.  This gave me time to read through them, make notes, and get second opinions from other people and professionals who know my son. Then, when they walked through each assessment at the beginning of the meeting, I was able to ask questions and point out areas I disagreed with.  That helps to level-set the room before we start writing goals and discussing services.  If any of the assessments are completely wrong, you can request an IEE (individual educational evaluation) which is a third-party private assessment that they school district has to pay for.  Or you could always pay for your own assessments from the specialists you trust and bring them to the IEP meeting.  
• Request an FBA (functional behavioral assessment) if you are going to be requesting any behavioral services like an aide or ABA.  I didn't even know what an FBA was, and wasn't offered one when they had me sign permission for them to do the other assessments (psych, OT, speech).  Apparently, you have to know to ask for one.  It can take several weeks to be completed, so make sure you ask for it well in advance of your IEP meeting, or you'll need to reconvene again after it's done.
• Record the meeting.  Notify the IEP team (or person coordinating the meeting) in writing that you will be recording the meeting.  You're supposed to give them a week's notice.  I use the voice memo app on my iPhone.
• Bring someone with you.  A spouse/sister/mother/friend.  Anyone who knows your child well, but most importantly, someone who can be there for you.  A good cop to your bad cop, or vice versa.  It can feel like you're being ganged up on in those meetings and it helps to feel like you have someone in your corner.  You just need to have your IEP coordinator add them to the list of attendees prior to the meeting. 

On the day of the meeting:

• Remember that YOU are as much a member of the IEP team as everyone else in that room.  In fact, YOU know your child better than any of the "professionals" who have observed your child over the span of a few days or weeks.  Therefore YOU have a voice in what goes into his IEP, his goals and his services. 
• Bring a photo of your child. I put a big picture of my son on the cover of my binder where I keep all his assessments and paper work.  It's a good reminder for everyone in the room, especially you, what you're all there for.  It can be a long (mine have been around 4 hours each so far) ordeal and if you're like me, seeing a picture of your child can give you strength.
• Bring a snack.  Like I mentioned above, my meetings tend to run long and I was so glad I had some almonds and a water in my giant purse ;-)
• Ask questions.  If you don't know an acronym or a term, ask what it means and write it down.  Don't be afraid that you'll look like you don't know - it's better to learn as you go than not to learn it at all.
• Speak the language.  You may find yourself wanting to say things like "what's best for my child is.." but they aren't there to do what's best.  Sad but true.  They're there to do what's "appropriate" for your child.  FAPE is the legal term that guides a lot of the IEP discussion - it's your child's legal right to a Free and Appropriate Public Education.  So say things like "that placement isn't appropriate for my child because..."  Also, keep all your comments specific to your child's behavior at school, and relative to how he accesses (or can't access) his education.  Don't tell them that he tantrums at bedtime, tell them that he tantrums when asked to do non-preferred tasks in school which prevents him from participating in classroom activities.  Oh - and if your child does anything like head-banging, hitting, biting, darting away from you into traffic, make sure to include that.  Any safety-related behaviors are sure to get addressed since the schools don't want to be liable. "Self-injurious behavior" or "physical aggression towards others" are  good terms to use if they apply to your child.  
• Focus on the negative.  I know it sounds harsh, but keep the conversation focused on the limitations and needs of your child that this IEP team is here to address.  Don't let them tell you "he's just shy" or get you going about how great it is that he knows his ABCs.  The only time you need to talk about what he CAN do is when establishing baseline for writing the goals.  You know all the wonderful things your child can do, but save that for cocktails afterward with a friend. 
• Take breaks.  Don't let them rush you through anything.  If you're getting confused, overwhelmed, or if you're arguing over a service or a goal and not getting anywhere - take a break.  For example, I was asking for more hours for a certain service (OT I think) and they were making excuses and dragging their feet.  I stated why we needed more hours, citing his assessment and some of the challenges he has in the classroom, then promptly excused myself for a bathroom break.  I went and played solitaire on my phone for about 5 minutes in the faculty restroom, and when I returned they offered me more hours.  Another time, I took a break because I didn't want them to see me cry.  Point is, you can take as many breaks as you need!!!  You're in control.
• Bring your list of goals and make sure they are all addressed in the IEP.  They will probably have a short list of goals and try to move on, but if you have some that weren't covered by theirs, stop and go back.   Services are based on goals, so if you don't get all the goals in there, it may be difficult to get certain services.  For example, my IEP team had no social skills goals.  I had them add goals like social greetings, initiating conversation with peers, and conflict resolution.  If these weren't in there, I wouldn't have any basis for needing an aide.  If you need help writing goals, click here for a really good resource I recently came across.
• Remember that the IEP team members are in special education for a reason. Even though they may seem like the enemy, and might not be "authorized" to offer the services your child needs at the time of the IEP meeting, they're not necessarily bad people.  They sure didn't get into special education for the fabulous salary and posh benefits, so try to remember that deep down they really want to help you and your child.  
• The IEP meeting is not the end.  If you don't get all the services you want during the meeting, there's always mediation, due process and even litigation if it comes to that.  Do your best to get what you can agreed to during the meeting, but don't feel like you failed if you walk out of there in a stalemate on something like OT or Speech. With all the budget cuts lately, the districts make it a habit to offer very little up front.  They're banking on 90% of the families accepting what they're offered in the IEP meeting.  But in a great many cases, those families are entitled to more under the law and can get it by going to mediation or due process.  I look at the IEP meeting as being the opening to the negotiations.  Once they learn that you'll fight for what your child needs, it may get easier over time.
• DON'T SIGN ANYTHING during the meeting except for the piece of paper that says you attended.  Take it home, read it, have others read it.  Have an attorney or an advocate read it too if you're so inclined.  You can take as long as you need - a week, two weeks, up to you.

After the meeting:

• The IEP document is like a Chinese Menu.  You don't have to accept everything offered.  For example, if they offer you a placement in a program that is not appropriate for your child you can decline the placement but still accept the OT and Speech services if you want.  Services and placements are separate.  I think you can even partially accept a service, like if they offered 4 hours of OT a month but you think he needs 16, you can accept the 4 hours for now to get services started while you have a second evaluation done - I haven't done this so you may want to consult an advocate or attorney to see how you can do something like this.
• You can call another IEP meeting whenever you want.  If something changes, a new behavioral issue arises, a service ends (like OT hours run out but you think he needs more), you can request to reconvene the team and re-evaluate.  You aren't limited to the annual IEP meeting.

Random acronyms/terms that I didn't know before my first IEP but come in handy now:

• NPA - non-public agency.  If the district can't provide a service for whatever reason - not enough staff, not qualified, not enough room in a class, they have to pay for an NPA to provide that service.  ABA is a service that many people used to get as NPA service, but I've heard it's getting harder and harder to get the districts to fund NPA services.
• IDEA - Individuals with Disabilities Education Act
• FAPE - Free and Appropriate Public Education
• FBA - functional behavioral assessment
• IEE - Individual educational evaluation
• Stay-Put - this goes into effect if you had a service and now they want to remove it.  For example, if you had 4 hrs of OT a month from a previous IEP, and now they want to remove it, under Stay-Put you can continue that service while you go to mediation or due process so your kid isn't left without services while the grown-ups duke it out.

Sheesh!  That was a long post.  I hope I didn't bore anyone or scare the crap out of anyone.  IEP's can be tough.  But some people sail through them.  It all depends on your district, your kid and your team.  I've had a rough go of it so far.  But with the above advice I've received over the last year I now walk into these with confidence.

So my parting words to parents who are preparing for their first IEP:  YOU CAN DO THIS.  Just like everything else we do for our kids, it's no fun but we can totally handle it.  Be calm, confident, and take your time.  Do your best and just get through it.  And lastly, make sure you have childcare scheduled for a couple hours extra - so you can go have a cocktail or pedicure or something to reward yourself after :-D

GOOD LUCK! 

photo of Michael on my binder cover for my last IEP meeting.

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.