Home > Government Relations > Kentucky’s Kids with Autism Deserve Better

Kentucky’s Kids with Autism Deserve Better

This is a guest post by Janet Pope, Autism Speaks volunteer and Anne Gregory, Autism Speaks Kentucky Chapter Advocacy Chair.

This past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.

After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!

Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.

We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments.  Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.

Thank you, Bart Baldwin, Representative Greer and Representative Brinkman!  And take that, John Grisham!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda please visit www.autismvotes.org.

Left to right – Janet Pope, Autism Speaks volunteer; Kentucky Governor Beshear; Anne Gregory, Autism Speaks Kentucky CAC

  1. Lorita Franklin
    May 30, 2010 at 8:03 am

    I’m so excited to hear that this bill passed. I am a mother of a child in Kentucky who has autism. I have also experienced the financial drain of costly therapies and treatments. Kudos to those who put this bill out there and also to those who thought enough of our kids to pass it.

  2. virginia
    June 10, 2010 at 1:33 pm

    I’M SO EXCITED TO HEAR THAT THE BILL PASSED . I AM A MOTHER OF A SON WITH AUTISM.IN KENTUCKY.THANK TO ALL OF U THAT THOUGHT ENOUGH OF OUR KIDS WITH THIS PAINFULL AUTISM.IT IS GOOD TO KNOW SOMEONE IS OUT THERE ON OUR SIDE.SO GOD BLESS U ALL .IT IS HARD ON THE KIDS AS WILL AS US AS MOTHER’S AND FARTHER’S OF KIDS WITH AUTISM.TO SEEOUR LOVE ONE’S GO THROUTH SOMETHING LIKE THIS IS HEART BREAKING.DAY IN DAY OUT. BUT WITH SOMEONE ON OUR SIDE IT IS A LITTLE BIT BATTER FOR US.SO THANK U AND GOD BLESS ALL OF U.

  3. Connie Simmons
    August 31, 2010 at 6:35 pm

    I very glad that Kentucky passed this bill. I am the mother of a 12 year old with Aspergers Syndrome. We have had Humana insurance the majority of his life and it always angered me that if he qualified for Passport he would have gotten more therapy that he needed. Passport covers vision therapy which a lot of autistic children seem to need. Humana doesn’t cover this therapy, nor does any vision plan. So we paid for this out of pocket. Two sessions a week at 60.00 a session. At that time I was working and had a flexible spending plan, so it covered the cost up to 2500.00. Last year I lost my job and so we did not put him back into therapy this summer as we did not have the money. (And still make too much money to qualify for any assistance.) I wonder if this bill will force Humana and other insurance companies to cover this therapy? Also for those of you who don’t realize this…your employer chooses your benefits not the insurance companies. So your employer could still decide not to cover certain things. I know this because I worked as an insurance verification and authorization specialist for several years. Unless the bill has some kind of clause that will prevent this and I hope it does.

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