“Our Whole World Fell Apart” – South Dakota Moms Fight For Autism Therapy Insurance Coverage, Part One

SIOUX FALLS, S.D.– A group of South Dakota moms didn’t know each other a couple of weeks ago. Now, these moms are bonded forever. They’ve teamed up, fighting for their children with autism ,and they’re taking their battle to the state capitol.

A child’s cry, seeking sensory experiences in an overwhelming world. This is autism.

“If we didn’t understand her or know what she wanted, she would go around the house and just start knocking everything over,” said Krystal Trull, whose daughter has autism.

“Before he got diagnosed, he only spoke 100 words,” said Darcy Weber, whose son has autism.

“The first day he started preschool, I sat outside his classroom all day because I was terrified that they couldn’t figure out what he wanted,” said Molly Eliason, whose son has autism.

Then, the families each discovered applied behavioral analysis therapy, or ABA. It’s individualized therapy designed to teach children real-world skills while early intervention is possible.

“So I reached out to ABA and that’s when our whole life changed for the better,” said Kari Quail, whose son has autism.

These moms say the results have been nothing short of extraordinary.

“I call it ‘Easton’s world’ and then, ‘our world’, so like ABA brings Easton out of his world and into our world,” said Weber.

“I was so worried that she was going to be nonverbal and I wasn’t ever going to hear her say ‘mom’ and she said her first word in less than two months,” said Trull.

“Within a month, he was speaking like three to four word sentences,” said Weber.

“I can’t even explain how far my son has come,” said Eliason.

Then, everything changed.

“Our whole world fell apart,” said Quail.

The families received these letters from their insurance providers in January. They say they will no longer cover ABA for those with small group or individual insurance plans. The cost of ABA varies, and none of the providers KDLT contacted would disclose any prices at all. However, one mom said it would cost her family $65 an hour out-of-pocket for ABA.

Many of the families are considering moving out-of-state or getting a new job at a larger company. For now, their children have stopped receiving ABA.

“She’s already shown regression,” said Trull.

“The eye contact is gone,” said Weber. “He doesn’t play with his sister as much. It’s devastating to watch your child go through that.”

ABA therapy is often 30 to 40 hours per week.  However in public schools, children with disabilities sometimes receive as little as fifteen minutes a week of more generalized speech and occupational therapy. Parents say ABA offered hope that was ripped away.

“It makes me angry,” said Eliason. “It makes me feel like our kids aren’t important and they are.”

“It’s hard to like watch my child like lose his service and not get it,” said Weber.

These mothers aren’t giving up. Two bills are going through the state house to revise or replace health insurance coverage requirements.

There’s much more to this story. KDLT’s Allison Royal reached out to one of the insurance companies that sent those letters. We’ll have part two to this story coming up on Thursday.

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