Friday, September 06, 2013

ABCs of Autism - I

I has to be for Insurance.  Although *I* hate to discuss it, I have to.  We have never had to deal with the insurance company so much as we have in the last five years and it's horrible.  When we first looked at Anthony's therapy center, we found out that Mike's insurance didn't have to cover us, because they are self-funded and because he works for the Federal Government, they don't have to abide by the autism mandate, and we didn't know what we'd do.  The lady at Anthony's school recommended I talk to another parent of a learner there, a lady who got her son his own insurance policy, and this woman was so nice to me, she gave me her insurance agent's information and said that they just paid their premium and the rest was covered.  She also told me that her son had made great strides at the ABA center, it was a great news phone call, and she remains a friend of mine.

When we thought we could get insurance coverage for just Anthony and they would pay for everything, we didn't believe it.  We were so nervous, like, the whole first year - I mean, we went from thinking we were going to have to get a Line of Credit for $30,000 to thinking we were going to pay $160 a month for his premiums, it was hard to believe!  But it was true, and he was covered for a long time.  We were able to get insurance for Anthony even though he had a pre-existing condition because of the autism mandate in Indiana.  The rules have changed, now, because of the fact that insurance companies are run by a bunch of horrible people, and in order to get your child his own insurance policy, at least one parent has to be on the policy too, which drives me insane, but at the time that we got Anthony's insurance, we just had to get it for him.  It has made for some extra paperwork and the premium has almost tripled since we've had it but as Mike says, as long as they keep paying, we can't complain.

Around two years ago, when Anthony was six, was when we started getting some letters from the insurance company, but it was so strange.  We'd get them on, like, the Saturday of Memorial Day weekend or something, these vaguely threatening letters.  Then of course, we had to take him to his developmental pediatrician every six months to prove that he still had autism.  It's terrible, to be so scared all the time, but we just did it, because who cared?  As long as they were still covering him, and he was doing well, who cared?

Then of course, this year was when they really started to threaten, to promise, that they were going to not pay for all his therapy anymore.  Because he is at school age now, and he is, as they constantly remind us, entitled to a free and public education, they think he should just - go to school.  Just get on the bus and go to school!  Be mainstreamed!  GO TO SCHOOL!  And he can't, I think, I mean, not in the way that other kids maybe can.  He is just getting toilet trained, he is just starting with the iPad as a communication device, he doesn't talk at all.  When I pick him up now, his therapist tells me how his day was, they write notes in his book, but what will happen if we just send him off to school, I wonder? But here's the thing - the insurance company doesn't care at all about Anthony and I love him - we are completely at odds when it comes to Anthony and I don't know how to navigate that.

But we have gotten help - the Training Director at Anthony's therapy center has been here before, they have done appeals before, and we are in the midst of it.  Mike went to a meeting yesterday at what would be Anthony's school - to take a look at it, and to see if there is a way we can send him there in the mornings, maybe, and then he can go to Little Star in the afternoons.  He said it seemed good, the teachers seem nice, and one even goes to our church, which is nice.  But he said that they had concerns that Anthony wouldn't stay seated, and um, he won't!  I don't know if he can right now, not for very long anyway and I worry that it's these sort of demands placed upon a kid like Anthony that leads to teachers and teachers' assistants to tape kids' hands to their desk, or to strap them in a chair and turn the chair on its' back, because the kids just won't listen!  I think they think, here's these OTHER kids with autism, and THEY can sit for hours, why can't this one?  Of course the answer is obvious WHY some kids can and some kids can't, but if what you are doing is MAINSTREAMING kids, obviously you are not focusing on their differences.

Our hope is that everyone decides that Anthony is not ready to have his ABA therapy cut from 40 hours a week to 20 hours a week in the next six months, but now we are more accepting of the fact that maybe if we focus on next fall as a goal for him to go to school part time, he will be better prepared and we all will be in a better place to go.  But I still resent the insurance companies and their scumbag doctors who pull key words from reports about Anthony and say that he is "doing well" and "communicating" and he should be able to be in the FREE and PUBLIC school.  The way I see it. Anthony sees a doctor who is prescribing ABA therapy 40 hours a week, and the insurance company is deciding that that doctor is wrong.  They want to look at an ABA center as being for early intervention only, someone at Anthony's center told me, but I don't know what will happen to Anthony, just because he didn't get better in time.  You can only be profoundly affected by Autism until you are six years old now?  Because the insurance companies say so?

It's awful, it's awful to deal with all this AND everything else, to make appointments to see schools that you don't want to see and meet with people who don't want to give you anything, at the same time that you are making sure Anthony isn't pooping in the yard, or running away, or not getting a dog.  But what can you do?  People have it worse, that's for sure.  I should have made I for IMPATIENT, because that's what everyone in the house is, so I have to wrap this up, ha!


Michelle said...

I saw you on Love That Max & love your idea of ABC's of Autism! How clever!

Astrid said...

Here via Love That Max. I can totally understand how frustrating this is. It's good htat insurance covered Anthony's therapies for so long, but it's sad that they are threatening now and wanting hi sent to an inappropriate school.