Wednesday, July 6, 2011

The wonderful world of Autism and Insurance

Let me start out with a back history.  A few weeks ago our daughters OT (occupational therapist) told us that she was leaving and moving out of state. Well that would have been nice to know a few weeks earlier when we were setting our plans for the summer. When I got the news then I was upset. And it wasn't because of the "oh fudge we have to find a new therapist" to me it was like our little girl was going to be loosing her best friend and she didn't even know it. She LOVED her therapist. LOVED. She knew exactly how her time was going to be when she was with her. She always lit up when she saw her and was always on her best behavior for her. She was the only OT she has had from the start until she started school.

Last week we had our appointment with her and it was suppose to be one of those to start transitioning to a new therapist time slot. As we left she said to us "see you next week!" Ok have a great weekend!

On Tuesday I got a call from the clinic telling me that our OT had to leave sooner than she thought and she quit. WTFFF <--- that means What The Fucking Freaking Fuck. Sorry for the words but that's exactly how I felt. As the chic on the other side of the phone is trying to discuss with me getting another therapist in there sooner I am bawling on the phone. Bawling. FUCK. Poor Avery. OMG How is she going to react to this? No goodbye's nothing! WTF. The poor kid. I don't know what happened in our OT's life that this had to be so sudden and she was wonderful for the whole time we had dealt with her so I can't be pissed at her for the sudden departure ( I mean I can be but I just can't)  I am just very disappointed that Avery will never get that closure (even though she wouldn't know what was really going on) but this will be one of the first time's someone she adores just leaves with no explanation.

The backlash to loosing her therapist is that kids like her deal with changes not during the change but sometimes process it later and react to it later. So we finally had a weekend with not a lot of head hitting and physical outbursts and now I can expect a whole lot more of this with this change.

Then today was the cherry on the sundae of the WTFFF. 

I had just finished with my physical therapy at the rehab center for my foot problem. I got a call from the school to pick her up because she wasn't feeling well and some green gunk coming out of her eyes and nose. Awesome. So I managed to get her into the pediatrician right away and get her checked out while the babysitter was with my oldest.

When I was gone the clinic called and asked that I call them back. Ok I call back and before we can schedule with the new therapist I had to talk to the benefits coordinator because they realized or found out that we had maxed out our 60 therapy sessions for the year. omfg. Our insurance policy through my husbands work renewed in May so I thought hmm that's odd let's call the insurance company. When I talked to the customer service representative (first one I ever dealt with that was nice and sympathetic) she told me that our insurance is based on a calendar year January -December. So that whole May deal of renewing the plan was just to make sure everything was the same. wtfff. THEN the best part of this is when I asked about the Illinois Autism Insurance Coverage Law. I found out that my husbands company is a self funded insurance plan. Who guess what opted out of the Autism coverage on their policies. WTFFF. So we are now at the point where we have to pay out of pocket if we want to have outside OT services. To the tune of $500 a month. Because the clinic who apparently thinks everyone can just dole out $120 a week by guilt for their child does not believe in a sliding scale. By the end of the year it would cost us $3,000 out of pocket if we were to keep her at the clinic. Anybody else crying with me yet?

Obviously this was a big blow to us today. Disappointed with the company he works with. Disappointed with the clinic and their strictness. Just a big ol wtfff. Because this would not have been that big of an issue 2 months ago. We would have had the extra money. Since then, well since Thursday of last week we don't have my husbands second job to get the extra income. It was killing him and it became impossible for him to juggle the two jobs. So we made the decision for him to quit finally after 5.5 years. Sigh. Then this.

While I sat today and tried to figure out what to do, and if you are ever in this position just an FYI nobody knows how to help you when you ask. So start looking yourself! I was able to get her into a short term therapy program through our local Easter Seals for the break between the summer session of school and the fall. During this time I will be looking into a long term solution. There is a regular 1 year waiting list for OT services through Easter Seals. Why Easter Seals? Because they have a private pay plan that is half of what the clinic would charge. They are in town and it's short term and will get her a chance to get on the waiting list if we decide that we really like it there.

So I am not going to end this post on a negative note because while I can only dwell on the insurance crap we are dealing with now I need to focus on a positive or I will go nuts.

Avery got on the bus yesterday to go to school and as she got in her car seat and I waved good bye to her she waved back!! It has never happened before and when I started clapping I was so happy that she did that she started clapping back! Yay! Go Avery!!!

So there you have it. Insurance + Autism = Suck Ass and Avery is waving bye bye! Good and the bad. Once again I hate Autism.


  1. This is much the suck...but wow, it's amazing that you were able to find even a duct-tape-solution right away. You are such an amazing mom!!

  2. I don't know how much contact you have had with other autism families in your community, but I found out behavioral therapist by asking other moms. He does the work on the side (not at a clinic) and charges about half what a clinic would charge... it has really helped out!

    Another thing to consider -- some clinics will offer you a discount if they know you are paying out of pocket (we have NO coverage for speech and got this info by asking around too). It's always worth a try to ask!

    And congrats to A on that big wave bye-bye! Hopefully, before you know it, she'll be doing it all the time :-)

  3. OK, that all sucks but the wave part--that melts my heart. I'm glad you found the positive in the midst of all the muck.

  4. love your happy ending
    That is devastating on the autism insurance :-(
    I spoke to our HR people and they decided to cover OT and PT
    We pay for ABA and play therapy out of pocket but atleast OT and PT are covered
    DO try that