The Rest of the School Story

(Re: July – September 2010)

I got back to the office and prepared my appeal to the insurance company who had initially denied coverage to Liam because we didn’t have a diagnosis and sent that on its way. (Many other details of my glamorous life of phone calls and paperwork have been removed so I don’t lose your attention.)

Several days later, I received a call that they would be extending coverage to Liam!!

Two pieces of our puzzle were finally in place. We had a diagnosis and an insurance policy to help us pay for Liam’s care!!  Too bad the school I had intended to send him no longer had an opening…..

Luckily, there are a few other center-based ABA therapy programs in the area.  We selected another one and began their enrollment process.  They are located much farther away, but they offer transportation!  Liam started after Labor Day.  I meet the van at a CVS Pharmacy near my office in the morning and the afternoons.  The van takes him to the center and back each day. 

We were so blessed that everything worked out like it did.  Nevertheless, I was pretty terrified to send Liam off to this therapy center all day everyday in a van driven by some guy I’d met once.  Not to mention the ever-lurking fear of what comes next????

Let the Research Begin

(Starting May 2010 – the rest of my life)

Now we know that there is a “high likelihood” that my child “may be a child with autism or Asperger’s”.  Fantastic.  Now what? 

On my way from that meeting back to work, I stopped by a school for kids with autism nearby called Little Star.  I had previously run across this school “accidentally” in a search for preschools near my office.  I no longer believe that it was coincidence that I knew about it.  They laid out for me everything I would need to do to get Liam enrolled.  The school provides ABA therapy for their students, which I later learned is really the only proven type of treatment for autism.  First things first, we would need an actual diagnosis.  Secondly, we would need to figure out how we were going to pay for it.  They pointed me to all of Indiana’s state specific heath insurance laws and guided me in what questions to ask of our current health insurance policies.

Diagnosis:

This would need to come from a developmental pediatrician or a pediatric neurologist.  We had already scheduled an evaluation with the developmental group at Riley, the local children’s hospital.  The appointment was set for August, more than three months away.  Someone I ran into (another coincidence, I’m sure…) suggested I call everyone on our current health plan who could make the diagnosis and see who had the earliest appointment.  Admittedly, this may not be the best way to select a medical provider for one’s offspring, but each day that passed felt like I was losing my child further into this unknown chasm.  I found a pediatric neurologist with a June 30 appointment, and scheduled it. I didn’t cancel the other, more comprehensive evaluation just in case.  Some doctors were scheduling a year out. A YEAR!!

How to pay for it:

I won’t bore you with how many phone calls and faxes were actually made and how many hours of research I did, but here’s what I found out: Health insurance policies written in and governed by the state of Indiana are required to pay for treatment for autism.  However, Josh and I are both covered by self-funded health insurance policies, which basically means they get to pick and chose what they cover, and neither covers ABA Therapy. So we found a private policy for just Liam that does and filled we applied for the coverage.  In case you’re wondering why we just don’t pay for it ourselves, Google it and you’ll see that we simply wouldn’t be able to afford it on our own.  After almost six months, I still almost puke when I see copies of the bills. 

The plan:

We had two plans in place, one for each possible outcome. 

Plan A: If we get approved for the insurance policy, then Liam goes to a full time ABA therapy center. This was best case scenario for Liam and for us logistically.

Plan B: If we are not approved for the insurance policy, then I quit my job, Liam goes to the half day program in our school district while I am home teaching myself ABA therapy, which I then do with Liam in the afternoons.

Both plans assume diagnosis on the spectrum because by this point I had entered Google University and read every book available at Borders, so I was pretty sure it would happen.

All of our balls were rolling, we just had to wait and see where they ended up...