Well, after a lot of fighting we got Alex to the Kennedy Krieger Institute. It was a ridiculous battle, and shame on Providence for trying to deny somebody as obviously in need as Alex. Their initial denial was flimsy at best, claiming various administrative errors. We appealed and they denied with much more coherent (but still ridiculous) reasons.
Their position was that ABA was experimental and therefore not necessary. Not only is that somewhat absurd, it’s also not the only thing KKI does. They have a toolbox filled with possibilities, and while ABA is an important part of their process, it is far from being the only thing.
Providence went on to claim Alex wasn’t going to benefit from the therapy anyway because he’s developmentally delayed, and Providence doesn’t cover developmentally disabled people’s mental health services.
Then they actually tried to claim that Alex’s Tuberous Sclerosis could be to blame for his behaviors, not his autism. I don’t know what kind of back-woods doctor they have on their team, but any decent review of Alex’s medical history would show that no doctor has ever believed that to be a possibility. We had a lot of hope that getting tumors out of his brain might help, but they just aren’t a significant issue in terms of behavior. And even if they were, KKI can look into that further anyway! Repeat after me: KKI isn’t just ABA therapy.
When we saw their statement, we asked to skip the level 2 appeal and jump straight into an expedited independent review. Less than one business day after we submitted our counter-arguments, the independent reviewers overturned Providence’s decision.
If anybody out there has a child with autism who is being denied something important, FIGHT. It almost seems like the denial was just a formality to see if we were serious, because the independent review was so quick to point out how ridiculous Providence’s claims were. Now I’m aware autism therapies are very expensive, but I’m convinced the costs could be lower if kids like Alex could get the help they need before things go to hell. Early intervention as opposed to constantly fighting to deny important treatments.
So leaving Alex a million miles from home is awful. But at least this time we know he’s with very specialized people who exclusively deal with major behaviors like Alex’s. There were a lot of people at Alex’s group home who did an amazing job, but it just didn’t have adequate staffing, and the staff who really cared weren’t given the support they needed to stick around.
Once Alex returns from KKI, he’ll have a doctor-ordered plan that needs to be followed, and per KKI’s suggestion a new group home where everything will be new to him – no falling into old habits or having staff who are used to doing things one way having to be retrained.
Giving up on cannabis, at least for now, is also pretty disappointing, especially for me. I had put so much faith into this little plant, especially after some of our amazing successes. But in the past year or two, it hasn’t done more than give him that “two point boost” I described a while ago. The huge improvements we saw early on have been very difficult to reproduce, and while we usually saw improvements, they weren’t consistent, they weren’t amazing transformations, and they only happened when we could get him to take the medicine – i.e., not every visit, not when he was extremely anxious, not when he was ruminating, etc. KKI can’t help with the cannabis, but what they offer is still incredibly important. They’ll be figuring out how to make him feel more in control and setting up a plan so he always knows what’s going to happen next.
A more pressing issue is why cannabis can’t get the hell off schedule 1. If it were allowed to be prescribed and grown, finding the right strain and getting consistency wouldn’t be so tough, and combining regularly low doses of cannabis with a solid behavior plan would probably do wonders for Alex. So while I am not renewing Alex’s OMMP card, you can bet I’m still watching carefully for who does and doesn’t support reforming our nation’s destructive war on drugs.