Robyn Schelp and Molly Myers are both moms of children with intellectual and developmental disabilities here in Columbia.
Robyn has three sons, and her 11-year-old has an unknown genetic disorder. Molly has an 8-year-old son who is missing a part of his brain, twin girls who were born prematurely and another three-year-old daughter.
They spoke about their ongoing fight to get their children the therapies they need because, in Missouri, legislation only requires insurance companies to cover diagnosis and treatment for people with autism spectrum disorders.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.
Robyn Schelp: So, we moved to Columbia six years ago, because we needed those services. And we couldn't get them where we were. Insurance only covered services for kids with autism. And even in Columbia, as wonderful as Columbia is, I still, we still can't use services because we have the wrong diagnosis.
And it is really frustrating… because he doesn't have autism, and it's so frustrating because I just want to scream, "He needs the exact same therapy as the child with autism for the exact same reason." It's a different diagnosis. But we have to start looking at needs and giving services based on needs. And not because they fit in the right box. And so –
Molly Myers: And taking away the hierarchy
Molly: Taking away the disability hierarchy. All kids with disabilities are deserving of those services, and deserving to reach their full potential.
Robyn: And this isn't just us bitter moms. Both of us – I'm sure you have friends, I know I have friends whose kids have autism that say, "It is wrong that my kids get all this, and you guys don't, and you're having to fight."
And so, they're fighting right alongside us. Because we… so two years ago, I started with the mom of a child with autism, working to change Missouri's law that was passed nine years ago. Because right now in Missouri, kids with the diagnosis of autism can get all their therapies covered by insurance, and our kids don't.
But we have insurance for a reason, and we pay ridiculous premiums so that we can use our insurance to cover medical needs, and they won't cover the medical need of my son's therapies and it is medically necessary.
Molly: Will has to have his therapies. He has to have it. Therapy is our medicine. And like you said, you know, the list can go on and on, Robin.
We are saving so much money down the line if Will can walk on uneven terrain. He is not going to fall down and break his leg all the time. When he falls down and breaks his leg, that is a huge cost to have it casted, to go to the specialist, to go… the list just… it's this snowball. It's a necessity.
Robyn: Politics can get ugly. I think when we started, I was just kind of like “whatever.” No, it's not a whatever. I really do feel like the David and Goliath, and there are times I'm like, "Goliath just keeps getting bigger,” and I really am just standing there with my little slingshot. Like "how are we going to do this?"
Molly: We have to keep proving what we know, what we know to be true. It's just a job for so many people. They might touch on personal things within the job or things that hit a little closer to home. This, this is not a job for us. This legislation is not a job. This is not a paycheck. This is our life.
This piece was reported and produced by Isabel Lohman.