Sad Day — Good-bye Rohde Family

I was sad to learn that Wayne and Robyne Rohde are leaving Oklahoma. If you don’t know who they are, maybe you should. They have been fighting a difficult battle with the Oklahoma Legislature to enact “Nick’s Law,” which would mandate insurance companies to pay for the treatment of children with autism spectrum disorders.

The law was named after the Rohde’s son Nick, who has autism. The bill passed in the Senate, but was defeated in the House. I’m sad that Oklahoma is losing a family who not only advocated for their child, but for the children of hundreds of other Oklahomans. I’m sad that the legislature chose to stand up for the insurance companies rather than families. Who are they sent to represent?

Oh, I know. Those who voted against it said that it would increase all of our insurance premiums up to 20 percent. This has not been the case in other states that mandate insurance coverage for children with autism. And we end up paying much, much more for these children down the line. And what happened to doing the right thing? Doing something to benefit the greater good?

I applaud Sen. Jay Paul Gumm, D-Durant, who will continue to fight the hard fight for these families who are faithfully paying their insurance premiums, yet can’t get coverage for the very expensive treatment that children with autism need.

I don’t know what I would like to do to Rep. Jason Nelson. It probably can’t be printed. While giving lip service to his sympathy for the Rohdes and families like them, he doesn’t support the mandate. His answer was to author a bill that would give $14,000 a year to parents to send autistic kids to private schools. I wonder how many private schools there are around the state that take children with autism. Wouldn’t it be better if they could just get the individualized therapy and medications they need from their insurance companies? The Rohdes pay approximately $40,000 a year out-of-pocket for therapy and medications for their son. I wonder what school Rep. Nelson has in mind for Nick? I don’t know why he and others like him (mostly Republican representatives) don’t just say they are supporting insurance companies (and now private schools) rather than be condescending toward these parents.

I can’t even begin to imagine what these families deal with, but I do know that they struggle to afford the costly therapy that their children need. They’re told that the children will benefit from therapy and often medications, and the earlier the better, yet they can’t afford to get it.

I can’t imagine the heartbreak of knowing what you need to do for your child, yet you can’t do it. These are not deadbeat parents. They are working people, contributing members of society. They have insurance. They pay their premiums.

When my son was 6, he was diagnosed with asthma. Prior to that he had never had any kind of breathing episode or any extraordinary problem. When we sent the claim for treatment to the insurance company, we were denied because his asthma was labeled a “pre-existing condition.” So, we paid for doctors, medications, treatments, shots, everything associated with the prevention and maintenance of this illness out-of-pocket. It was a struggle sometimes. And we paid ENORMOUS monthly insurance premiums, which kept going up, despite the fact that they wouldn’t cover my son. It’s beyond frustrating. Dealing with my son’s problem is tiny in comparison to what parents who have children with autism face.

I can’t imagine what the Rohde family has had to endure, emotionally and financially, but I don’t blame them for moving to another state where some of that pressure will be lessened. I feel bad for the families left behind in Oklahoma.

Categories: Editor’s Blog