Tuesday, February 15, 2011

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


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

Tuesday, February 1, 2011

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.


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


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.
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.