Lucas Camilo

As some of you may know, we’ve been involved in a lawsuit against one of the biggest health insurance companies (Regence Blue Shield) since we moved to Seattle a few years back.  An amazing lawyer named Ele Hamburger brought the case against Regence (after winning settlements with the other two largest insurers in the state) over their denial of coverage for “neuro-developmental” therapies.  Though the case focused on Applied Behavior Analysis therapy (ABA), Lucas had the potential to be included because he has required speech, physical, and occupational therapy since early in his life due to his disability.  Therefore, we were asked if Lucas would be a named plaintiff in the lawsuit.  Always up for a good fight, Lucas said yes, and the case has been in the courts ever since.

Well, a few weeks ago Lucas and his fellow plaintiffs (other kids with developmental disabilities) won!  Or rather, the lawyers reached a very favorable settlement requiring Regence to pay $6 million to families who were denied the coverage.  More importantly, going forward thousands of kids with disabilities (primarily but not exclusively autism) will now be able to get the neuro-developmental therapies they need – fully covered by insurance – without any low, artificial limits on number of visits.  It’s shameful that Regence and other insurers denied or limited such coverage in the past, and awesome that Ele and her team forced them into the settlement. (The settlement still needs to be approved by the judges but it seems likely that it will be.)

It turned out to be  a double victory as the Washington state supreme court subsequently ruled that Regence was violating the Mental Health Parity Act by denying coverage to these kids.  As the article says:

“A unanimous state Supreme Court ruling last week provided mental-health advocates with a powerful tool to ensure equal insurance coverage for disorders of the brain and body.  In unequivocal language, the justices tossed out a blanket exclusion of coverage for childhood autism treatments imposed by Regence BlueShield, the state’s largest insurer.”

And that wasn’t all.  After the ruling, the state Insurance Commissioner then declared that all Washington state insurance companies (not just Regence) must notify policyholder that they have the right to review claims going back to 2006. Once claims have been re-evaluated, the insurance companies will be liable to pay for any coverage that was denied in violation of the act.

So even as we’ve continued to struggle with some issues related to Lucas’s school this week and the fact they still haven’t hired a 1-to-1 aide for him (a subject for a separate blog post), we’re feeling good about this victory and excited to share it with you all.  Already some friends who have a daughter with special needs have been in touch with the lawyer here in Seattle about help moving forward on a similar suit in another jurisdiction.

In the meantime, we celebrated last weekend by going shopping for Halloween costumes at Goodwill :)

We’ve mentioned Lucas’s primary passion — dinosaurs — quite a bit on this blog.  But you may not know that he loves music almost as much as prehistoric creatures.  Lucas loves listening to music at home, and he constantly calls out the playlist when we’re in the van.  (If you wonder why our most current music knowledge is the release date of the new Casper Babypants album , it’s because Lucas hogs the stereo.)  And for two years we took him to Music Together classes with a fabulous local teacher.  We’d sit in a circle with kids mostly younger than Lucas and sing songs (parents sang, kids did whatever they wanted), dance around like trains, pull imaginary persimmons out of our pockets, and bang away at instruments.  Lucas loved it, and he’d sing all the songs at home, though at music class he was usually quiet.

He had sort of aged out of Music Together a while ago, but we kept going until kindergarten made it impossible to go.  And then I saw a little sign up for a family community choir.  I thought Lucas would love it, though I worried that all the extra noise we bring (suction and vent can be quite loud, especially when everything else is quiet) could be awkward.  So I wrote to the choir director and asked if the choir could handle some unusually loud machine noise, and she said “no problem!”

So Lucas and I (and Burke when he can make it) joined the choir.  And its awesome.  There are usually just five or six families with their kids sitting around singing folk songs, or sometimes pop songs — last week one of the older girls requested a song that is apparently on the radio all the time (like I said, I know nothing beyond Casper.)  And we sang True Colors, Cyndi Lauper’s super hit from the 80’s.  The choir director is musically amazing.  She gets the group, most of whom have limited musical experience or talent, to sing some pretty complicated rounds.  And she is so welcoming to Lucas, making time and space for him and his unique sounds, and celebrating when she notices he’s singing.  Or even trying to sing.

The fact that he’s trying to sing along is the amazing thing.  Lucas can be shy when he’s not among friends or family.  For example, during the first few weeks of kindergarten he supposedly only said a few words.  In two years of music class, even when he knew every word to a song, he almost never sang in class.  And this all makes sense to me.  He knows people have trouble understanding him.  He has a quiet voice when he’s sitting up.  He can feel shy, but physically has no way to move himself away, so not speaking or singing is his only way of shrinking away.

But on the very first day of choir, he sang along to This Land Is Your Land.  Then he listened for the rest of the hour, but I was still beaming with pride.  The next week he sang along to two songs.  And then last week we did a call-and-response song that went around the whole circle.  We had done it before and I’d sung Lucas’s part for him.  This time I kept whispering in his ear “are you going to sing?”  (I actually dread this song because the key is hard and I sound terrible when I sing my solo response part.)  The whole choir sings “Hey Krista,” and then I have to sing back “I think I hear my name.”  And then that repeats, and then one more line where you “pass” the song on to someone else.  Well.  We were going around the circle, and then the person next to Lucas went.  And then the whole choir sang “Hey Lucas.”  There was a pause.  And then his tiny, sweet, so-absolutely-unique voice sang back out “I think I hear my name.”  My heart exploded I was so proud of him!

When he passed the song on to me, I couldn’t help but laugh at myself.  If Lucas can do it — with the physical challenge of simply making sound around a trach, and knowing he sounds different than everyone else, and being a shy kid — I certainly can get over my hang ups about my less than perfect pitch!  I mean, I’m still not planning on taking over the Seattle karaoke scene, but I felt so bolstered by Lucas’s bravery.

[Note: if you signed up to receive updates when we post to Lucas’s blog you may have noticed that last time it sent out like 6 different emails.  Sorry about that!  It’s fixed now :) ]

Fall is in full swing and lots it’s going on in our world that we haven’t had time to write about.  We bought a house, for example.  It’s a block away from where we currently live and has a great single floor layout for a kid in a wheelchair (and a basement that we’re hoping to rent to a friend eventually) – so that’s exciting!  Lucas calls it “the house with the birds on the walls” or “the house where we speak with a British accent.”  The former is probably self-explanatory; the latter stems from the fact that our real estate agent is British and Lucas REALLY likes speaking with a British accent these days, so having an authentic Brit to do it with made the house quite memorable.

In other good news, Lucas has continued to do well in kindergarten, going from a half day to when he first returned to 2/3 of a day now.  His leg is all but healed but he still has a removable splint on it, and we’re going to wait until we get the go-ahead from the orthopedic specialist (hopefully next week) to remove the splint entirely before trying a full day at school.  The other challenge is that the school still has not provided Lucas with a one-to-one aide, something which is required under his Individualized Education Program, or IEP.  Lucas is accompanied to school by his nurse but she can’t be on top of his health needs (which includes feeding him through the g-tube, changing, etc) and also work with him on academic matters.  At least there is someone coming into the class occasionally to give her bathroom breaks!  Krista put some pressure on the school last week and finally they are moving ahead on hiring a permanent aide for Lucas.  We’ll report more on his life at school when we have more time; for now, its fair to say that despite some challenges, it’s encouraging to see enjoying it and building up stamina for the longer days.

This weekend Krista is at a yoga training and so Burke and Lucas are getting out for some fun activities. He’s currently taking a long nap (something he doesn’t do as much during the week these days since school takes him right through his old nap time.)  Earlier today we made it to Lucas’s cousin’s soccer game and we’re happy to report they trounced their opponent – maintaining good sportsmanship, of course.   Here are a couple shots from the game: