Life Of Jason

Lt. Governor Peter Kinder signed legislation creating the Missouri Commission on Autism Spectrum Disorders and the Office of Autism Services in the Department of Mental Health.  The ceremony was held this afternoon at the Burrell Behavioral Health Children’s Center.  (A really great facility for this event and the staff at Burrell was very nice and very helpful.)

The event featured Lt. Governor Kinder, Julie Keathley (wife of late Office of Administration commissioner Michael Keathley), Rep. Dwight Scharnhorst and Bernie Simons of the Missouri Department of Mental Health.

Rep. Sara Lampe of Springfield was there to lend her support and give the session a bi-partisan flavor.  I spoke with Sara about a bill she had mentioned she was going to sponsor earlier this year regarding autism and insurance companies and she told me that her bill was never even given the chance to come to the floor for a discussion or vote.  She pledged to bring that bill back for the next session.  All of the bills that were directed at insurance and autism never came up for votes in the last session.

Also in attendance were many families of children with autism who were generally excited about the creation of the Office of Autism Services.  The fact we have this office is a step in the right direction and right now anything positive from Jefferson City is a very welcome item.

The Lt. Governor spoke first and detailed the $3.9 million in funding in the last fiscal year to shorten waiting times for diagnosis and early intervention of autism.  That funding had doubled the previous dollars granted for autism diagnoses, treatment and research.   Lt. Governor Kinder said this year $12.4 million in new funding has been secured for services relating to autism including funding help to build a world-class treatment facility in Columbia at the Thompson Center.

“The Office of Autism Services will provide leadership in program development for parents, adults and children with autism spectrum disorders,” Lt. Governor Kinder said.  “Such leadership will include establishment of program standards, coordination and program capacity.  Combined with these funding increases, the Commission and Office of Autism Services will help insure that more Missouri families have what they need to help their children with autism live fuller and happier lives.”

“For too long, families dealing with autism have been frustrated yet determined in their search for services and treatment related to autism,” Lt. Kinder said.  Talk about an understatement.  Hopefully the Office of Autism Services will be a strong tool for Missouri families facing this.

The Lt. Governor then spoke about Mrs. Keathley and then praised a local Springfield area advocate for autism awareness, research and early intervention and thanked him for his efforts.

“It is vitally important that the state step up and do everything we can to help families cope with autism spectrum disorders,” Lt. Governor Kinder added.  “I am pleased that this legislation will do just that.  I am here to tell you that the State of Missouri over the last two to three years has stepped up and has provided more resources on this problem than we ever have in the history of Missouri.  It’s not the whole answer but it’s a major step forward from where we were just a few years ago.”  Boy…ain’t that the truth.

Julie Keathley came to speak while Lt. Governor Kinder was signing SB 768.  She spoke about how she and her husband adopted their son Mason and what their family is facing with autism every day.  She said he was diagnosed at age three.

“When we went to get help for our child we found out that it really was a problem and there was not a set policy about what you do for these children,” Mrs. Keathley shared.  “So we just started knocking doors down.  It was just great that I had a husband that worked in Jeff City and happened to work for the governor and so here we came!”

She spoke of the loss of her husband to cancer in March and how they are going to continue to work to get more state support for families facing autism spectrum disorders.

“We’re helping get a unifed approach of how we’re going to approach autism for all the children that are coming in the future,” Mrs. Keathley said.  “This is a great step.”

Rep. Dwight Scharnhorst of the St. Louis area spoke next and shared about how he came to know autism through a blue eyed boy like Mrs. Keathley…his grandson Bryce who died last year.  He talked about how Bryce spent every other weekend with him and it gave him a first hand knowledge about what families throughout Missouri are facing every day.

He said that he has in the past and will continue in the future to introduce legislation aimed and helping Missouri families “get through the fog of autism.”

“Just identifying it early and getting early intervention can improve the quality of life not only for the individual with autism as well as their family,” Rep. Scharnhorst said.

I want to scream an amen when he said this:

“We have a short window to work with and as parents of autistic children and grandchildren already know once that window has passed the quality of life will be diminished permanently.”

That’s the whole crux of the issue here.  The earlier children can get treatment the greater likelyhood of success from therapy and treatment.

Rep. Scharnhorst was the man who brought SB 768 to the house and it passed the house 151-0.

“All the legislators are aware of the epidemic that is coming our way,” Rep. Scharnhorst stated.  “We’re on the very front edge.  The prospects of 1 in every 150 children…1 in every 93 boys…in the future is just hard to imagine.  It’s hard to wrap your brain around it.”

“Bills like this, a commission like this will go a long way,” Rep. Scharnhorst continued.  “It’s not the answer.  It’s another step.”

Rep. Scharnhorst said that Lt. Governor Kinder and Governor Blunt should be commended for their leadership on this issue.

Bernie Simons of the Missouri Department of Mental Health said this will allow them to really focus on autism spectrum disorders.

The floor was opened to questions.  I asked Mr. Simons how the new funding will lower the waiting times for families with autistic children.  He basically gave me a long answer that said he really couldn’t tell but because of the basis they’ve set up this year with the $3.9 million funding that trained professionals to deal with families in more rural areas so that it can cut down on the number of people who have to travel to major cities for treatment.

Chad Livengood from the Springfield News-Leader asked the Lt. Governor about insurance matters and how behavorial therapy isn’t covered.  He wanted to know if the Lt. Governor felt more could be done to get the private sector involved.  The Lt. Governor said that it was an education process with “our partners in private industry” and spoke about mandates that can drive up insurance rates.

“It’s a good question that we should all be focused on,” Lt. Governor Kinder said.

So I jumped in and followed up asking about insurance companies that turn down families for coverage because of an autistic child even though they won’t pay for treatment of autism.  (Yes…they’ll turn down a family because of autism ostensibly because of the cost to treat it but then they don’t pay to treat it.)   I asked if he would be in favor of requiring all insurance companies in Missouri to rule out autism as a pre-existing condition for use in denying coverage.  He said that he would likely be in favor of that but he would want to see arguments on both sides.

Overall, a good day and a good thing for families in Missouri dealing with autism.  I want to thank the Lt. Governor for giving me a signed copy of the bill that will be hanging up in Eli’s bedroom.