Thursday, August 1, 2013

Autism updates

Here's Sean boarding the bus for Camp TLC, a four-day three-night camping trip for kids with Autism/Asperger's Syndrome. Two of the kids Sean started school with over ten years ago will be there with their sisters and one of their mothers, so he'll have at least five people he's familiar with. He'll be home on Sunday afternoon. Seems like a long time right now, but by Sunday, I'm sure we'll both be saying that it went too fast. :D

This particular weekend trip is sponsored/coordinated by (amongst others) Sport-Social, an awesome place I didn't even know existed until now. Sean already loves the place and he was only there for half an hour's worth of observation/assessment so they could match him up with a "buddy" for camp. Every camper gets their own "buddy" who is trained to deal with kids like them, and several of these trained buddies come from Sports-Social. Check 'em out!

The actual location of the camp is Torino Ranch, at the base of Mt. Charleston next to Red Rock Canyon. It looks gorgeous! Maybe I'll go next year too.

Now for the recent downside of things. Sean is also attending a day camp for Asperger's students at Montevista Hospital.  The program is wonderful and Sean is doing well with it. I can't say enough good things about the people running the program.

So what's the downside? Insurance, of course. Thankfully, Sean has Medicaid who have agreed to pay for a limited number of visits (with the opportunity to ask for more as needed). It's HPN that's the problem. Again.

Remember how they kept wanting to send Sean to Touro University for ABA therapy when we were asking for PSR (psychosocial rehab)? Guess what. They *still* want to send Sean to Touro for ABA, and refuse to cover anything else, because:
  • "This treatment is focused on your specific problems and diagnosis. Additional services the requesting program could give you, such as learning study habits and socialization skills, could also occur at community support groups or school."
Now that would all be fine except for a couple of minor problems. First, it takes three to four months to get into Touro for an assessment, and they're going to say the same thing I did... Sean doesn't need ABA therapy. Yes, his primary diagnosis is autism, but he's also listed as being at the Asperger's (high functioning) end of the scale. As I understand it, ABA therapy is more for the little ones when they are first diagnosed. Sean has progressed beyond that. So why waste everyone's time filling out this huge packet of forms so we can wait three or four months only to find out there isn't much they can do for him? This program at Montevista, is available NOW, he's benefitting from it NOW, and high school starts in three *weeks*, not months.

My other complaint is that, once again, some paper-shuffling pencil pusher (PSPP) is telling a doctor what treatment their patient needs. Sean's psychologist has a PhD in clinical psychology. She is the one who recommended the Montevista program for Sean. She has been working with him for a few years now and knows him well. Even if the PSPP is a clinical psychologist, they don't know Sean, nor do the know the program he is being referred to. So how can they say that a different program is better? Just because of a word written under "diagnosis"? A term that covers a whole spectrum of behaviors and developmental problems? ABA is not the only treatment for autism, folks.

Imagine this: a doctor refers his patient to a certain facility for an MRI because the patient is too large for the regular machines, and this facility has the bigger ones. The insurance company, on the other hand, insists that the patient go to another facility (where they won't fit into the machine any more than Sean fits into an ABA-only program), and even insists that they have a CAT scan instead because it's generally more revealing than MRI for the patient's specific diagnosis. Maybe so; but don't they think the doctor has reasons for ordering an MRI instead of the CAT scan? Do they think the doctor doesn't know the difference and they have to tell him that the CAT scan should be the better test?

This may not be the best example since I don't really know all the reasons a doctor would have for ordering an MRI or a CAT scan to begin with, much less why one would be chosen over the other. My point is that the doctor should be allowed to decide what treatment is best suited to their individual patient's needs, not some PSPP with a list of diagnoses and matching tests/therapies expected to fit all situations. It's just plain stupid for them to continually throw ABA at us over and over again as if it were the only/best way to treat a patient with an autism spectrum disorder.

Now I admit, having insurance is better than having none. Trying to pay for everything we need for Sean, much less the rest of us, would bankrupt us for sure. But the only reason the doctors and hospitals charge so much, from what I understand, is because of the insurance companies to begin with.  

All that aside, the important part is that Sean *is* getting what he needs, to the best of our ability to provide it. People like Tara at Montevista, programs like Nevada Medicaid and Nevada Checkup, and generous places like the Torino Foundation have made that possible. No thanks to HPN whatsoever. (Raspberries to HPN - :P~~~  So there.)

Okay, now that I've got that off my chest, I'll be happy to leave you in peace (or pieces, as the case may be) while I clean up my own pieces and get them put back together. Again.