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Wednesday, April 2, 2014

Handling the Stress

Ok - it's been way too long since my last blogpost.  Seeing as how today is Autism Awareness Day (have you bought your blue lights 'y'all?), I pretty much had to post something today.

To my credit, things the past month have been pretty busy....I've

-Conferenced with state senators and national advocates about the changes to Colorado's Autism Insurance Mandate (Booyah!).
-Contacted every last ABA therapy clinic in the state about said changes
-Turned Craig's room into a top security facility after he demolished all previous baby proofing efforts by yanking screws out of the walls, breaking a lamp base (did you know there is clay in the bottom of those things?), and tearing zip ties (yep, those things that police occasionally use for handcuffs).
-Teamed up with The Arc of Larimer County to form a support group
-Started shopping for a condo (rent here is E-X-P-E-N-S-I-V-E)
-Had a visit from my Mother in Law

Bob and I are frequently asked of how we handle the stress of all this on top of intensive therapy hours, team meetings, IEP's, evaluations, etc...

I have three basic ways...

#1 - HUMOR...
It's no secret that I'm a pretty sarcastic person.  I more or less believe that "Life is hard; get a helmet!"  From prince to pauper, bad things happen.  You don't think that Bill Gates doesn't regularly stub his toe or Oprah Winfrey has an occasional bad hair day?  So, I like to laugh at life long the way...like when Utah legalized gambling...
#2 - Yoga...(and other exercise)
I recently discovered yoga on accident (long story).  Anyway, on a regular basis I do yoga (sometimes Craig helps).
#3 - Crafts...(and organizing)
I L-O-V-E crafting and organizing.  People constantly ask me if I'm on Pinterest.  The answer is NO!  This is because an alcoholic doesn't go into bars, a gambler doesn't go into casinos, and a craft/organization-oholic doesn't go on Pinterest.

I was going to create a montage of the shopping bags, storage chest, DVD stand, and birthday gift I made just in the last month alone...but...Photoshop hasn't allowed me to save any files for days now...so you'll have to settle for just the DVD stand (still, pretty cool, right?).
Now Bob...well Bob doesn't really have time to be stressed with all my projects.

Wednesday, March 5, 2014

When Insurance Companies Decide to "Play Doctor."

In my home I have two conflicting documents: a note from my son's psychologist (who is an employee of our HMO) stating that Craig needs 20 hours of ABA therapy a week, and a letter from that same HMO stating that their approved 4.4 hours a week will adequately, "meet Craig's needs."

Indeed, my son's psychologist freely admitted that there was no way our insurance policy would pay for her recommended amount of treatment.  She also told me that Colorado's law was changing, and he could lose even more services.

The past few months, I've worked tirelessly to prevent just that.

For example: yesterday I happily sat through an hour and a half of testimony at the Colorado Division of Insurance listening to the implications of emergency regulation 13-E-16, how the ACA applies, considerations from MHPAEA, the efficacy of ABA, instructions from HB 13-1266, the process of obtaining accurate actuarially equivalents, precedent set from various state courts, and details revealed from public records requests of various health insurance plans.

At this hearing, parents sat next to clinicians as we shared how these complex matters weave together to decide if this child (my child), along with hundreds of other children with autism in Colorado, will have their treatment determined by a licensed and qualified clinician (who will have performed multiple tests, carefully draw up personalized recommendations, and will follow his progress closely through meticulously recorded data), or a health insurance company (with their eye on their own bottom line):

I cannot emphasize enough: this treatment changes lives.  It gives children with Autism the chance to learn to speak, teaches basic self help skills, allows access to education, and helps children grow up to be independent adults (aka: taxpayers).

That's why I'm asking you to send this letter to the Colorado Division of Insurance at DORA_INS_RulesAndRecords@state.co.us (with "Comments on 4-2-47" in the subject line) by March 7th at 5pm (MST).  It doesn't matter if you don't live in Colorado; please write in anyway.  Colorado is blazing the trail; other states (possibly your own) are soon going to follow what Colorado does. 

If you have any questions, please leave a comment below (I'm happy to answer them). 

Monday, February 17, 2014

What we do on a cloudy day...

Sane people stay indoors on stormy Saturday mornings.  But, in our house, I start to shout, "BOB!  FAMILY PHOTOS!!!"
I'm not exactly a professional photographer (and by "not exactly," I mean "not at all").  To compensate for a lack of skill, I always take photos on cloudy days.  The stormy skies act as a great filter and produce fantastic results...

We always have to take hundreds of photos since Craig won't look up.  I've tried bribery, but rocks are way too fascinating.
Thankfully, going down the slide always puts a smile on Craig's face. 
This last time, we even managed to capture a rare moment of cuddling. 
And don't worry, that isn't a gun barrel.  I used a long slide to recreate this James Bond shot.  I'm just waiting for Bob to start introducing himself as, "Brown, Bob Brown." 

Friday, February 7, 2014

New Face At The Brown House

This past week saw a new addition to our family:
Bob and I have been thinking about adopting a cat for a while (we both grew up with cats).  After looking into various studies on the positive effects pets have on children with Autism, we finally decided to make the commitment (literally, we had to sign a huge stack of documents before we could adopt the cat).

Craig wanted to name the cat "cat."  I felt that would seem a little cold..."Come here cat!", "Don't let cat get out!", "Get off me cat!", "Did you feed cat?"  Yeah...doesn't exactly scream love and affection.

Instead, Bob and I named her Nacho (after Craig's favorite movie).

Craig already loves the new family member, but he's still a little scared.  A few years back he was licked by a giraffe (yep...a giraffe); he still doesn't like animals to look at him...it's as if he thinks they are going to extend a long tongue out at him.

Thankfully, Nacho is helping Craig's social skills grow leaps and bounds.  Craig's IEP actually contains a goal stating that he'll speak at an appropriate volume with peers.  Currently, Craig will only whisper to classmates...yeah...that doesn't work out too well in a room full of 15 other screaming kids.  However, Craig ALWAYS yells at Nacho.  I figure that between the two, we'll get him to an standard volume (hopefully before Nacho needs a hearing aid).
In the mean time, it's great to have a 3rd living thing in the house that ignores me at every opportunity, makes messes I'll have to clean up, gets into things I would rather her stay out of, complains when I try to cuddle with it, needs me to feed it....

Saturday, January 18, 2014

The Reason I Have Gray Hair

I'm only 26 years old, yet I need to regularly dye my hair to hide all the grays.  The origin of my canities isn't a mystery: constant battle with insurance.

At the risk of whining rather than "Celebrating the Small Stuff," let me just say that parents with autistic children are experts in insurance troubles: there is always one more skirmish, campaign, or clash waiting just beyond your current struggle...it's like being stuck with poor Phil Connors in "Groundhog Day" (trust me, it's not as funny when it's a personal experience).

Today I received a devastating letter from Kaiser; they have denied my formal appeal for more ABA therapy.  Earlier this year, in blatant disregard for emergency regulation 13-E-16, Kaiser only approved  550 ABA therapy sessions for all children age 0-8.

In my appeal, I sent Kaiser the emergency regulation from the Colorado Division of Insurance stating, "all carriers... must provide coverage annually for ABA therapy that is equivalent to what was required prior to May 13, 2013."  This means that Kaiser must pay for a minimum of 8-10 hours a week of therapy.

However, their denial letter states, "The annual benefit maximum for ABA Therapy for children ages 0-8 is 550 visits/year."  This comes out to just 4.4 hours a week of therapy (those who passed 2nd grade math will recognize the large difference).

While this is devastating news, I still hold hope with my formal complaint to the Colorado Division of Insurance.  Additionally, later on this year the Division of Insurance will release permanent regulations (presumably to fix problems just like this).

In the mean time, excuse me as I take another trip to King Soopers to buy more hair dye...I'll need it tonight.

If you'd like to help out, I have a page detailing what you can do here.  Any amount of help is GREATLY appreciated.

Thursday, January 16, 2014

WANTED: ABA Therapy Data

In case you haven't noticed, I'm currently working with clinics, advocacy organizations, and parents from around the nation to help the Autism Insurance Mandate in Colorado have a smooth conversion into compliance with the Affordable Care Act (if you haven't noticed by now, where have you been?).

This conversion is especially critical as Colorado is one of the first states in the nation to take the step; other states are bound to follow in upcoming years. 

The Colorado Division of Insurance (or DOI), who is charged with the task of the conversion, has been closely working with the Autism Community throughout the process (and I'm very grateful for this). 

However, the DOI needs help; they are currently trying to determine exactly how much ABA therapy bills out for per hour.  Due to insurance contract restrictions, therapy clinics cannot share their billing information with the DOI.  Additionally, insurance companies are unlikely to comply with our requests for this data.

Through my discussions with the DOI and therapy clinics, it was determined that a good option would be for parents to send this information in themselves; but getting the word out is still problematic.  Therapy clinics cannot even ASK parents to send this information in, so the Autism Community is trying to get the word out: send Kim Tenure from the Autism Society of Colorado your ABA therapy bills (view their request for data here).  She is going to compile the information and give it to the Division of Insurance.  

Specifically, we need:
1 - The billing code used
2 - The billed amount
3 - The paid amount
You can black out all personal information (your personal information is NOT needed) on the bill or explanation of benefits and email a copy to kim@autismcolorado.org.  Even if you're not from Colorado, this data will still be helpful. 

If you feel more comfortable, instead you can send the information directly to Matt Mortier from the Division of Insurance at matt.mortier@state.co.us.   If you need, I have a sample letter you can use here.  Again, PLEASE black out all personal information first (I have spoken with the DOI personally and they DO NOT need your personal information for the data to be useful). 

If you have any questions, please feel free to leave a comment below or email me at askautismquestion@gmail.com. 

Thank you all again for your help!

Sunday, January 5, 2014

Not Playing By the Rules

Last week I was thrilled to see the Division of Insurance take a step to protect Autistic children from losing therapy services (read about their emergency ruling here).

Sadly, our insurance provider, Kaiser Permanente, is electing not to play by the rules.  On Friday (after being forced to cancel 2 days of therapy from a lack of authorization), our dedicated Kaiser representative called me to say that Craig has only been approved for 550 sessions this year; the emergency regulation from the Division of Insurance clearly states that Craig must be approved for significantly more (about 2-3 times more).  In other words, Craig should have been approved for at least 8-10 hours of therapy per week (possibly more), yet he was only approved for 4.4 hours a week.  For those out there who aren't ABA experts, 4.4 hours per week isn't effective (and there are dozens of studies to prove it).

After that call, I frantically filed formal appeals with the Division of Insurance and Kaiser.  Additionally, Maddie Garrett, from KOAA, recently covered Kaiser's direct violation of emergency regulation 13-E-16.

Now we're embroiled in a terrifying waiting game; a game we moved states to avoid...
When living in Utah, we had to count on an autism insurance mandate being passed before the pilot program lost funding; realizing that's no way to live our life, we moved to Colorado.  Now, since Kaiser isn't adhering to the emergency regulations, we have to hope and pray that our appeals make it through before Craig runs out of therapy sessions.

I'm not gonna lie - it sucks.

Thankfully, we do have other things to help us smile in the mean time...like the outfit Craig wanted to wear to church this morning:
Oh yeah, he chose this all by himself.