Newsflash: Life Still Not Fair

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.

Photo (16)

Later that day at home, however, she asked to put her backpack on, and proceeded to just wear it around. Photo (17)


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.

Photo (19)

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.

Photo (18)

 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.

11 thoughts on “Newsflash: Life Still Not Fair”

  1. So, lemme add to that stemwinder of a post that the Canadian system is looking pretty goddamn good by comparison, at least when it comes to actually covering autism treatment. But I bet we don’t get our own campaign commercial.


  2. The media might be a good weapon here. You might also consider spicing it up with some audio tape. If you could get people on the phone claiming they cover the treatment it would go much further. Threats to go to the media might get you pretty far…though maybe not, insurance companies don’t really work for the public – they work for your boss.
    Anyway, sad times.


  3. What a slap in the face. Jayne, you did SOOOOO much checking and researching. There is NO way you are, in any, even tiny way, responsible for any sort of “mix-up” here.
    We are sorry, surprised, upset to read about this new development…..we only slightly saw it coming when you mentioned the insurance companies were looking for ways out of paying for therapy.
    After our tears are dried and our anger has calmed, please tell us what there is, from our end, that we can do to get Kurt therapy NOW, not when the insurance battles have been fought for several years.


  4. What Kim said. You can just assume that the expletives are included in mine.
    Darwin is right about the media. Outrage is a powerful weapon.


  5. Jayne its not your fault…you didn’t do anything wrong, your are a great mother and you always ate wel took good care of yourself when pregnant; there are alot of autistic kids out there…is there a group of women you can get involved with where you all can talk things out and where you can try diffrent things out there? I will say prayers too , I know there is an affordable helpful answer…it will pop up…you might get ahold of the media and let people know about this…it is the only way things will change…


  6. one more thing, I just remebered…you went to day care for a week and you cried the whole week and then mom found out they were putting you in a closet or bathroom and she took you out of there so fast and gave them Hell!!


  7. Oh Jayne, this is horrible. It’s like it was set up so that it was impossible for you to find out the correct information you were looking for.
    And nobody who knows anything would believe that autism should be blamed on the kiddo’s parents. Ugh.
    I hope and pray that better solutions come for Kurt, and SOON. Or, like his grandma and grandpa said, NOW.


  8. I wish I could come up with something as witty as Kimberly. Perhaps a creative use of many, many expletives. Poo on the whole lot of them. I am seeing a good friend of mine who has an autistic child AND lives in Virginia. I will let you know if she has any suggestions. In the meantime, you are a truly wonderful mom who did her homework. Give ’em hell!!!!


  9. This just makes me so mad. It is something everyone should know. I am so sorry you have had such a bad experience here. There is strength in numbers. Find those friends to stand with you to solve this. I will start by alerting the Virginia Counseling Association of this. They lobby for legislation.


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