Parents of children with autism say Gov. Noem broke her promise to them


SIOUX FALLS, S.D. (KELO) – Earlier this year, KELOLAND Investigates exposed why many children with autism were losing their insurance benefit to cover effective treatment.

Just last week, the state found a way to close the loophole that allowed insurers to drop coverage for the therapy. But the new requirements won’t go into effect until 2021. Now several parents say Governor Kristi Noem broke her promise to them and their kids.

Parents and autism advocates pushed for legislation in February to require that small group and individual insurance policies cover Applied Behavior Analysis, just like large group policies must do. Opponents argued that would open up a Pandora’s Box, requiring insurance companies to cover just about everything. There was also a concern that it would affect what everyone in the State pays for insurance. But several mothers say the Governor gave them hope that even after the bill was killed, their kids could get this essential therapy sooner rather than later.

We first introduced you to four-year-old Easton as he was losing insurance coverage for a proven therapy for children with autism. Easton had been non-verbal before Applied Behavior Analysis. Now six months later, going without ABA is taking its toll.

“He’s going back into what I always say, ‘Easton’s world,’ he’s not responding as well to what he was before ABA therapy,” Darcy Weber said.

Molly and Brad Eliason say their 14-year-old son’s ABA therapy over a decade has been essential.

Molly Eliason: When he started getting ABA therapy he was doing physical harm to himself. He would try to shove his fist down this throat. He was just not capable of doing anything. And because of ABA he’s…
Brad Eliason: Where he is today… I mean he’s not independent, but he functions just fine without our family unit.

They paid $800 a month for an individual insurance policy to cover it until it was dropped. Now they’re worried without it, he won’t be able to function as an independent adult.

“What happens when he turns 18 and he’s an adult? I’m frightened for his future,” Molly Eliason said.

These parents are praising the State’s efforts to require all private policies to cover ABA starting in 2021. But they’re concerned about their children in the meantime.

Krystal Trull’s four-year-old daughter Nikole has autism. She asked Governor Noem about the loss of coverage at her 2019 Priorities Tour stop in Sioux Falls in February.

“I have talked to my senior staff–that we’re going to get together with a lot of you that have really been dramatically affected by this and lost coverage, and see if there is a way we can work to get coverage because every day you’re not getting treatment has a big impact on you and your families, your children,” Noem said on Facebook video in February. 

“That she was going to find a solution for these kids now. Because she seemed at the time to understand that every day without therapy is a problem,” Trull said.

Governor Noem also made a promise to parents that day.

“It’s not something we can just say, ‘Oh the bill died and it goes away.’ So we’re going to be working with you. We have all your contact information from that hearing,” Noem said in Facebook video in February.

Angela Kennecke: Did her office reach out to you?
Trull: They did not. I reached out to them; multiple times.

The Eliasons showed KELOLAND Investigates a photo of their son meeting Noem at a Hobo Day Parade, and his mom’s Facebook plea to restore his therapy coverage:

“I’ve emailed her several times, asking her for help. My son needs help. You stopped to help him at the parade. He needs help now too. And she’s never responded to me,” Molly Eliason said.

These parents say if another year and a half goes by and the state fails to take action, their children will fall through the cracks.

“I go back to what she said in February. We’re saying, we’re acknowledging that every day without therapy has a big impact. She said that. And she still wants these kids and families to go a year and a half without this coverage,” Trull said.

We requested an interview with Governor Noem; instead her office issued us a statement.

Governor Noem and her team have been working to allow for greater flexibility and increased health coverage opportunities for children with autism. The recent federal approval will result in added coverage plans for applied behavior analysis therapy – the gold standard treatment for kids with autism. Governor Noem understands why some are frustrated with the speed of these changes, but it’s our hope that these changes will be sustainable and effective once in place.

Kristin Wileman, Press Secretary

One of the major arguments in this case was the cost and potential rise in insurance premiums for everyone.

KELOLAND Investigates looked into other states that mandated coverage by all insurance policies.

In Missouri in 2018, Insurance premiums went up by 51 cents a month because of ABA coverage. 

In South Carolina in 2015, premiums rose up by 40 cents a month.

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