Check My Math

I haven't posted for a while...sorry about that.  I've been consumed with  one issue...getting insurance coverage for autism.  If you live in Utah, please read and consider.
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Sunday night was kind of weird.  I woke up at 3:00 and my mind started churning about how to get our legislation passed.  I said, "Shut up, mind" and tried to get back to sleep.  Then Ben woke up with a croupy cough.

With a little coaxing he got back to sleep, but I was awake.  Thinking about math is usually a good way to get drowsy.  This time it wasn't so helpful.

I thought about probability.  Bear with me, please.

Assuming autism is randomly distributed:

• The odds of having an autistic kid in Utah are 1/47.
• The odds of not having an autistic kid are 46/47 or about .9787.
• If you have 2 kids, the odds of neither of them being autistic is .9787 times .9787 = .9578 or 95%.

It continues like that - for any group of people, you raise .9787 to the power of the number of people in the group to find out the odds of NOT having one of them being autistic.  

Google will actually do this math.  Here's the whole thing as a formula that works there - just put it in the search bar:  :

• 100*(1-(46/47)^33) 
• 100*(1-(46/47)^66)
• 100*(1-(46/47)^110)

You put the number of people in the population you want to look at as the last number and it spits out the probability that at least one member of your population will have autism.

• 33 people gives >50% chance
• 66 gives >75%
• 110 gives >90%

You can do any population size you like, just replace that last number with how many people you've got.

You can start with your kids or how many you'd like to have.  Add your nephews and nieces.  Add how many grandkids you have or hope to have.  Plug that number into the formula.  What are the odds?  

If you have a business, how many kids do your employees have?  How many are there in your kid's class?  You can plug those numbers in there. 

This math didn't put me to sleep, and I hope it will be a wake up call for some of y'all.  

We have a bill, SB57, currently in the Utah Senate.  It doesn't fix autism, but it does ensure that autism doesn't break a family's finances when they have health insurance.  That's what insurance is for.  It doesn't directly help families who don't have health insurance, but it keeps those who do from competing with them for scarce resources.

If you live in Utah, please take a moment to e-mail or call your state legislators in support of SB57 - you can find them here.  If you'd like to learn more, visit the Utah Autism Coalition's page.

Jungle Gold: Family Emergency

Not a light topic today...sorry.

One of our friends just posted this to Facebook.  It's an episode of a reality show about two men, George and Scott, who are prospecting for gold in Ghana.  When Scott's 2 YO is diagnosed with an autism spectrum disorder, he flies home to be with his family.

Around 24 minutes into the episode, the wife explains to him that there is therapy that can help their son, but that it's very expensive, and not covered by their insurance because they live in Utah.  Yup...they're from Utah.

If they lived in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Iowa, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Minnesota, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia, or Wisconsin, they would have a still have a scary diagnosis to deal with, but at least they'd be able to access medical help without going bankrupt.

I don't watch TV much, and reality shows less, but this scene really impressed me.  They managed to sum up in a couple of minutes the emotional rollercoaster that so many Utah families have experienced:  getting a diagnosis, then learning that there's therapy that works for most kids, but it costs more than an Ivy League education and is not covered by most insurance in our state.

Thanks Scott and Andrea for sharing that moment for us.

And welcome to the autism community...we're on a road less traveled and it can be hard, but there's a lot of joy and good friends to be found and occasionally gold.

I hope y'all find some gold.

Breaking Bad (news)

Have you heard about the Canadian version of Breaking Bad? It's about a high school chemistry teacher who is diagnosed with cancer. He gets free healthcare and gets better. There's no second season.

Ba-doom-ch!

(Mom:  Breaking Bad is a show about a guy who starts making an illegal drug to save his family from financial ruin.  Things go poorly.  You don't want to watch it.)

Here's the Salt Lake Tribune story about how this year's autism insurance mandate croaked yesterday.  Here's my favorite quote:

"After conferring with House and Senate leadership — I don’t have the support of the insurance industry, and I frankly don’t have the votes for the bill in its original form."

I think Senator Doctor Shiozawa is awesome.  He's intelligent and articulate and I hope he stays in politics for more than one term.  We don't really have a two party system in Utah, but elect more guys like him and it'll be okay.

A couple of things irk me about this.  The bill quietly transmogrified into more pilot program.  The pilot program can help some people, and I'm happy for the kids who get help (assuming it passes).  What irks me is that it happened without public debate.  I want to hear the arguments against it.  I want our elected officials to stand up and say why they won't pass this bill.  Maybe there are really good reasons.  I'd like to know them.

The other thing that irks me is highlighted in yellow above.  Why is the insurance industry's voice more powerful than doctors and people who need treatment?  If their arguments are that persuasive, why haven't we heard them?  Insurance coverage for autism is required in 32 states - has it bit into insurers' profits there?  How much?

Don't worry about us - we're going to get Ben what he needs.  Our family can summon the resources with or without insurance.  There are a lot of families who aren't so fortunate.  Maybe a little high school chemistry can help them...*

*Happy Trouble does not condone the manufacturing or selling of illicit goods or services.

Balls.

18, 532.  That's how many balls were displayed in the Utah-shaped enclosure.  I showed up late to the event on Capitol Hill, and there was only clean-up to do.  I held out a big plastic bag while Home Depot volunteers scooped balls into it with a shovel.  We filled up bag after bag, until the pit was not very deep.

Mirella said, "At some point, it's easier to pick them up one-by-one," so I squatted down and started picking up balls.  After a few minutes, I stopped and looked at the ball in my hand.  This is a child I'm holding.

We had bags and bags of them...big bags, stuffed to the brim, and there were still so many on the floor.  I looked at the bags against the wall and the remainder in the pit.  I wonder which one of them is Ben?

I don't know if this display had any effect on our legislators, but it got me right in the feels.

So, that's a lot of balls kids.  I was impressed by Senator Mayne when SB55 was discussed in the Business and Labor committee.  She was an educator for many years and talked about seeing the impact of autism on not just the kids, but the families too.

I shouted at my monitor when I heard this Fox News story on the meeting.  Towards the 2:30 mark, the reporter says something like "there are about 18,000 parents watching this debate with a real investment in its outcome."  I'm sure it was just a brain fart on his part, but it usually takes 2 parents to make a child, so that would be 36,000.

It's not easy to be the sibling of an autistic kid either.  Utah has the highest rate of children per couple in the country, but let's say it's 2 for easy math.  Two grown-ups and two kids times 18,532 = 74,128 people whose lives will be directly impacted by this bill.  It's not as straightforward as that, of course -- some people have multiple autistic kids, and this bill won't affect uninsured people, and so on.  On the other hand, I'm not including grandparents or classmates or friends or co-workers or any of the other relationships that wind up being altered by one kid with autism.  When you help one kid...just one, you are helping all those people too.

Okay, enough talk...time to go make dinner.  A family's got to eat.

Groundhog day 1

Shiny!

Today,  I attended a public meeting of Utah's Autism Treatment Fund Advisory Committee and it made quite an impression on me, so I want to share that with you.

This was the first time I've attended their meetings, but I recognized several people right away.  There was Cheryl Smith, whose son Carson is the namesake of a scholarship we hope to get.  Also representing parents was Leeann Whiffen, who looked vaguely familiar.

ERRRK!

OK, I started writing that days ago last week.  I was going to write something about "finding your voice" and speaking up for autistics.  Then I got distracted when I started researching the Carson Smith scholarship.  It turns out that it's linked with the politics of school vouchers.  This was Distraction #1.

Other than voting, I've never taken a particular stand on vouchers.  I think that everybody in the U.S. should get to vote when they turn 18.  I think it's important that they should be able to think critically about issues, do their own math, and make good decisions.  Otherwise, our democracy will wind up run by people who vote the way some extremist on TV or radio tells them.  A quality free education through at least high school seems to be the way to go.  Caveat:  My mom was a public high school teacher.


There is a school of thought that says the IDEA should force school systems to provide ABA therapy.  Imagine if all 582,793/47=12,400 autistic Utah schoolkids asked for $30,000 worth of treatment ($372M) and Utah's government agreed to it (that would be increasing the education budget by about 10%).  That's about as likely as forcing the Fed give its land to Utah.

I feel pretty strongly that autism is a medical condition that should be covered by insurance.  Unfortunately, that was shot down this year, so, yea, I'll have our voucher application in on time, because ABA is expensive and you can only take out so many mortgages on one house.

Stay tuned.

Good sunrise.

Castle Valley Sunrise

I'm a bit dense this week.  I think it's the spring allergy season kicking in.  That and Ben has been having some sleep issues.

I had a post pretty much ready to go, but managed to delete it.  Darn.  I say, "Darn," but I really mean something stronger.  When you only get to write every now and again, losing a post is a blow.

Alright then, nothin' to be done except to move on.

F is for friend

The deceased post was about a weekend we spent in southern Utah in a cabin.  We were there so that Lovely Wife could run in a half-marathon, and we stayed with 3 other couples and 4 other kids.

It was a really fun time.  The thing that struck me most was the importance of friends, for both kids and grown-ups.

One of the boys there is 9 months or so younger than Ben.  He's neurotypical, so he was talking a mile a minute and following Bubba around.  For at least part of the time, Ben latched on to that samba line and was actually, kind of, in a way, playing with another kid.  It may not seem like much, but historically, Ben completely ignores other kids, treating them like inanimate objects.  Hearing Ben actually say something to "C" and getting a response...priceless.  This was a win.

Adorable.

Here's to friends for grown-ups.  When you have a special needs kid, it can be really hard to maintain your friendships with other adults.  When you go to someone else's house, you have to spend 90% of your attention wrangling your kid.

Staying in a cabin with us (or camping, or whatever) is not the same as with typical families.  One of us grown-ups is devoted to the special kid.  The other one may be able to handle everything else, but it's definitely not as easy as hanging out with typical folks.  So...thanks...thanks for hanging out with us.  It means a ton.  It's very easy to get isolated and go days without speaking to an adult (like when LW is on a bidness trip).  BTW, LW is away on a trip right now!



And when you ask me "how's it going?' and I unload the pure and unadulterated agony of failure from the Utah legislature... thanks for not running away (this means you, John V).

Anyway, I've got a dozen things buzzing away in my brain right now, and there's no way to put them into a decent blog post, I'll just have to purge that stuff I guess.  I do have to tell y'all that there's a new study published about the incidence of autism.  Utah is winning!

Autism? Walk it off, kid.

I did it! (once)

So, I've been getting involved with our Utah government to try and get legislation passed that would force insurers to stop excluding autism.

Big news!  So, Utah Republicans have come up with a way to help 800 children with autism get the therapy they need.  I'm glad that some kids will get help.  I have some concerns though.

According to the Children's Defense Fund, there are 868, 000 children living in Utah.  From what I understand, Utah's autism rate is higher than the national average at 1 in 77.  That means we have about 11,000 autistic children.

So, 800 kids will get help when 11,000 need help.  Hmmm.

I'm going to a town hall meeting tomorrow night to learn more.  I'll try to stay positive.  Meanwhile, Ben is having a really hard time getting to sleep tonight.  Potty training has been going well at school, but not so much at home.  Poop.

Things that make you go, "hmmm"

sometimes, curvy is calming

Last Monday, I got a chance to speak with Utah Representative Mike Noel about HB69, which would make it so that insurance companies would be required to cover people with autism.  He was nice, listened to our concerns and said thoughtful, intelligent things.

At one point in the conversation, Lauren (UAC intern) mentioned Temple Grandin.  Representative Noel didn't bat an eye...he started talking about curved cattle moving equipment  Representative Noel is a cattle rancher, and to him, Temple Grandin designs innovative cattle stuff.

Lauren said, "You know... Temple Grandin has autism."  Representative Noel and his intern expressed surprise.  I felt a little tingly thing in my brain that might have been a stroke, but I can still move my fingers and toes as well as I could before, so probably not.

A little part of me thinks Representative Noel was just pulling my leg (he seems a clever fellow).  The romantic part of me thinks about how cool it would be if my own autistic kid would someday be noteworthy for being the best at something.