This post is actually two posts!
The first is about Maria and school. It's happy and cute. Below it is another post, dark and upsetting. I'll tell you when to stop reading, so you don't accidentally read that one.
Here's the first post:
Maria's First Day At Preschool
Here's the short version: she cried. A lot. When I picked her up at noon, the director, a lovely lady named Carmela, said to me: "She had a rough first day." I asked her, "Well, did she EVER stop crying?" Carmela: "…um.."
Here's she was that morning, before she figured out what the hell was going on.
That turned out to be a good sign, because the second day of school went much better. I am assured that she played and chatted, even though there were tears when I dropped her off.
As it turns out, because Kurt is part of a class that was added at the last minute, he actually doesn't start for two more weeks. So he gets extra special Mommy and Kurt time a twice a week while Maria is at school. This week we went to the track, because the track combines two of Kurt's loves: running and neat, symmetrical lines.
He had a great time. He barely broke a sweat. I nearly died.
Okay, here comes the second post.
In Which We Are Up A Creek and I Feel Responsible
Let's say you're us. You're living in Canada, about to be kicked out for having an autistic kid, when a great job at a great little public university in Virginia materialises. The area seems like a good fit, cost of living is totally reasonable, and best of all, working at a public university in Virginia means you'll be a state employee with decent benefits, like health insurance from a company called Anthem.
Now, if you were to read this, which is the text of a bill passed in Virginia mandating insurance coverage for Applied Behavior Analysis (ABA), the standard treatment for autism, and then you were to read this, which is the Virginia employees' Human Resources website announcing Anthem's coverage for ABA therapy starting last July, and then you read THIS, Anthem's own member's handbook announcing its coverage of ABA therapy on page 2, you might slyly conclude that university employees have health insurance that covers ABA therapy up to $35000 a year from ages 2-6, in accordance with state law.
If you're the paranoid type like I am, you might even call the human resources department at the university and double check with them that it's all true, in which case they tell you Yes! ABA therapy is covered by Anthem.
Then, because you're a crazy person, you might call Anthem directly and ask them if it's all true, in which case they, too, tell you Yes! ABA therapy is covered.
It seems pretty cut and dry, doesn't it?
Except… look at the wording of the bill that was passed and at the insurance policy itself:
"....... (therapy) shall be provided or supervised by a board certified behavior analyst who is licensed
by the Board of Medicine."
Do you know how many ABA therapists are licensed by Virginia's Board of Medicine?
Zero. Because the Virginia Board of Medicine doesn't actually, thus far, license ABA therapists.
That's right. ABA therapists have their own regulatory body, and with few exceptions, in this country and in Canada, "board certified behavior analyst" means "certified by the board of behavior analysts." Licensing doesn't enter into it.
So what does this mean? Well, a few things, really.
1. I hate to generalize about large groups of people, but this was the greatest of many experiences I have had with human resources staff in which they didn't seem very knowledgeable about their company. They seem intent on giving the listener an answer, any answer, without doing any work to ensure it's a correct answer. In this case, we were communicating with a (now very apologetic) senior HR staff member.
2. It must be great for insurance companies to be able to advertise a huge benefit no one can access. As a nurse, I've seen some pretty fucked up situations in which insurance companies could be directly implicated, but this takes it. That the customer service representatives at Anthem seem genuinely ignorant of the situation is not surprising, because Anthem actually farms out its mental health benefits to a company called Value Options.
3. But most importantly, we're on the hook for Kurt's therapy until….when? Until Virginia's Board of Medicine can determine the criteria for licensure, and then license everybody. Until then, the cost of the therapy Kurt had in Canada would run us, oh, about $1900 a month. Roughly twice our mortgage.
Don't get me wrong here. It's not that I object to state licensing requirements for autism therapists. I object to insurance companies pretending to cover therapy for autism.
And yes, I'm reaching out to the ASD community here, and yes I'm writing higher ups, and yes I plan to annoy the hell out of Value Options and yes I'm considering TP-ing the governor's mansion.
But actually, the worst part of it is how dumb I feel. Maternal guilt is burdensome at baseline. But there is a lot of autism research and general judgement out there to mess with your head. Mothers of autistic kids, we're not refrigerator mothers anymore, but rest assured, it's still all our fault. Now we've got bad genes, and we were too fat when we were pregnant, and we didn't try hard enough to avoid a c-section or we weren't paranoid enough during pregnancy. Then maybe we didn't get the kid treatment soon enough, or what we've given him isn't the best treatment possible, or it isn't enough hours per week or we're not trying alternative treatments. We're not proactive enough, we're not "warrior moms", we're not devoting every extra moment to trying to engage our children, we're not banding together with other moms to form new autism schools, and we don't love our kids enough to come up with innovative solutions.
Or we enthusiastically support a cross continental move to a place we can't decently afford basic, but probably still inadequate treatment because we weren't resourceful enough to figure out the insurance shell game. Being called a Fridge Mama is looking pretty good by comparison.