Saturday, April 27, 2013

No Health Insurance Reform this Year for Hawaii--A Sad and Shameful Day



Kudos to Sen Josh Green, MD--sponsor of SB668.  Thank you for your foresight and compassion and efforts to make Hawaii a better place for Hawaii's autistic children.
Yesterday was a shameful day for Hawaii and a big disappointment for our kids with autism, and their families.  After passing through all committees necessary to bring this bill to a floor vote—and with seemingly strong support from all committee chairs, Hawaii’s backroom process allowed this bill to be killed.  Although Hawaii’s culture is big on saving face and blameless legislating, I’ll add a little accountability here—Della Au Belatti from the House and David Ige from the Senate were key in getting this bill killed. 

It wasn’t without a lot of help from HMSA (what Blue Cross/Blue Shield is called in Hawaii).  They lobbied very hard against this bill, which would have provided up to $50,000 per year in Applied Behavior Analysis (ABA) services--the recognized standard-of-care for autism.  And they blatantly lied to the State’s Health and Human Services Department, falsely telling them this bill would cost them $42 million per year because the state’s Medicaid program would be required to cover ABA costs for kids in the program—despite the fact that there was language in the bill that specifically said Medicaid would not be included.
 
Wall of Shame: Rep Della Belatti and Sen David Ige, voters will remember you on election day...
Rep. Della Au Belatti (representing District 24—that’s you, Makiki, Tantulus, McCully and Papakolea) patted herself on the back, saying the bill had come the farthest it had ever come, so we could be proud of that.  She said she knew “a few” states had already passed similar legislation, but there were “too many issues”.   Apparently “a few” means TWO THIRDS to Rep Belatti.  As an FYI, Rep Belatti, two thirds is more than HALF. 
Yes, we can!! Let's vote out the buffoons!
To date, THIRTY-TWO states have passed similar bills, and in no state is Medicaid required to cover ABA therapy for autism.  As an FYI, a federal judge recently ordered Florida Medicaid to cover ABA for the treatment of autism spectrum disorders for children under the age of 21, effective April 2, 2012.  Florida is appealing this ruling, but you should expect to see similar cases popping up around the country.  In her ruling for the plaintiffs, U.S. District Court Judge Joan Lenard's ruling that its denial of ABA coverage under Medicaid was "arbitrary, capricious and unreasonable." The judge found AHCA's claim that ABA was experimental "outrageous."
Green states have insurance reform; red and yellow are pursuing it. The bright green states are pursuing legislation to STRENGTHEN their existing bills. 

It is really hard for me to understand why the insurance companies come out so strongly against covering autism.  There is now data from the states that have passed insurance reform that show the average cost is 31 cents per month per insured.  That’s it—31 cents.  That works out to less than $4 a year—barely enough for a Starbucks coffee.  And the insurance companies can always spread the cost around—which is what insurance is all about, spreading risk—if they think this cuts into their profits too much. 
Insurance for autism costs less per year than one Starbucks drink!
To all those saying they don’t want to pay another penny to see autistic kids covered, to you I say you are paying a lot of dollars for those kids--that and go see if you can buy a heart. Autism is the fastest growing developmental disability in the US and these kids go to public school, where their needed services are provided by the schools.  That’s your tax dollars at work, and they will increase every year to continue to provide the kind of care insurance companies don’t have to pay for.   
Without insurance reform, in the end taxpayers will foot the bill...
Then these children age out of the educational system, and your tax dollars pay to care for these kids—estimated by a Harvard researcher at over $3.2 million per person over the lifetime.  So ask yourself why you are so keen to give the insurance companies a pass…

Yesterday’s events felt like a kick in the gut to me, yet my son, Ryan would not even be covered under this bill.  As federal employees, my husband and I have federally-regulated insurance policies so are not affected by any legislation passed at the state level.  

As I have said before, I am not a selfless person so I struggled with why I felt so completely miserable when our “legislators” failed to move the bill for a full floor vote.  Of course I was incredibly disappointed that so many children will not receive desperately needed services that could result in their recovery—such a waste of human capital.  I realized how very expensive it will become for my state to care for autistic children as they grow into autistic adults. The hours invested in getting this bill passed seemed to have been a waste, and my time is very valuable to me.  But none those things really explained why I felt sick to the very pit of my stomach.

And then it hit me…it’s almost as if these folks in the legislature who represent our state are saying our children’s lives don’t matter.  Autistic children are just not valuable enough to possibly risk some political capital for. 
Their lives MATTER!
I see comments on-line where people make some pretty disgusting comments about kids with autism. I try not to let that bother me—most of these folks are clearly not intellectuals. It makes me wonder who the “special needs” people really are, in fact because whether these knuckledraggers realize it or not, society will pay to care for these children one way or another.  We can choose as a society to care for these kids while they are young so they have a shot at leading an independent life, or we can pay exponentially more to keep them in state-subsidized group homes while receiving social security payments. To me the choice is clear.

To the Hawaii legislature, most especially Rep Au Belatti and Sen Ige, I want to say our kids matter.  

They matter a lot.


132 comments:

  1. Hey Janet,

    I am so sorry to read this ! I though that your bill would make it this year. I cannot understand why they did not let it pass.

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  2. Thanks, Jana...we will keep pressing and looking into other options! I had to "vent" after this long and frustrating journey. Blogs are good for that! I appreciate you reading my blog all the way from Germany. Bis dann, Janet :-)

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  3. Thank you for all your hard work. I have a autistic son, and I was hoping this would have passed. It's costing a lot out of pocket to raise our son. It even bothers me more that Rep. Belatti did not make this happen. She is from the same alumni that I graduated from. They will only realize later when one of their love ones are affected with autism and see how much this is needed. I think this is a selfish act that they have displayed to the autism community. We need more people like you who has heart and brains to know what is greatly needed for the families of Hawaii. I hope we try again and make this bill resurrect.

    Meredith

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  4. Aloha, Mer--we will keep at it. Rep Belatti is not the only one to blame, however. Still, she did not show the leadership required of a committee chair.

    Yes, it is a lot of money out of pocket--but what else can you do? It's infuriating to hear legislators vote it down seemingly not caring at all about the children who will not live productive and independent lives because their parents couldn't afford the therapy their kids need. Or the parents who go into bankruptcy and lose their homes...and these are people who did the right thing and paid their insurance premiums for just such a medical crisis.

    Remember these folks at election time...

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  5. The regional center in california gave me a few dozen hours of low quality aba a few years ago. I also got a social skill class called ucla peers but my medical insurance paid for most of it and i think development disabled services pay for rest heck no i get 500 bill i am fighting. Ucla peers has program for people age 5 to 25 if peers soci as l skill class can help anybody or their child look it up on internet they have class outside of la area as well.

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  6. California has insurance reform for autism coverage--if your insurance is regulated by the state. Good luck getting the services you need.

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    1. Wow—writing a reply to a 5 year old blog piece. You must have a lot of time on your hands. As far as whining goes, if you had to pay high insurance premiums only to find your child’s medically-necessary treatment is specifically excluded, you might be whining, too...however, in my case, since our insurance is federal vice state, this legislation (which has since been passed) doesn’t affect us, but it does help thousands of children with autism in Hawaii.

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