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South Dakota parents look for autism treatment coverage

February 9, 2019
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In this Friday, Feb. 1, 2019 photo, Krystal Trull plays with her daughter Nikole, 4, at their house in Sioux Falls, S.D. (Loren Townsley/The Argus Leader via AP)

SIOUX FALLS, S.D. (AP) — Krystal Trull jumped into action when she heard her insurance plan was dropping her daughter’s intensive autism treatments.

The treatments gave 4-year-old Nikole the gift of speech for the first time, and for the first time Trull received the simple yet precious gift of being able to talk with her daughter.

But the treatments are gone.

This month, some insurance plans through Sanford Health and Avera Health lost coverage of effective, evidence-based autism treatments. And the families who lost therapy for their loved ones asked state lawmakers to intervene.

“For these kids right now that were abruptly taken out of therapy, there’s nothing for them,” Trull told the Argus Leader.

Sanford and Avera officials point to an exemption in a South Dakota law which allows them to halt coverage of the treatment, called Applied Behavior Analysis, for holders of their individual and small-group plans.

Trull and other parents wasted little time in enlisting the help of legislators.

Applied Behavior Analysis can effectively improve the language skills and behavior of children with autism. It’s intensive, requiring up to 40 hours a week with health care providers. And it’s expensive.

The families affected by the change are those on individual or small-group plans, as both health care systems take advantage of a loophole in state law.

South Dakota officials passed a 2014 law that requires insurance to cover Applied Behavior Analysis and the daily, reinforcement-based behavior treatments for children with autism. However, language in the statute included a pass for small-group and individual plans to avoid Obamacare-era requirements for state financing — the requirement in question no longer exists.

In fact, if Trull and other families lived in North Dakota, they wouldn’t have lost coverage. North Dakota officials approved a rule in July that requires all insurance plans to cover Applied Behavior Analysis for children with autism.

So why are Sanford and Avera using the state’s loophole, instead of simply continuing the higher level of coverage they still offer North Dakota families?

“At this point, it’s a price sensitivity issue in the South Dakota health insurance market,” said Kirk Zimmer, president of Sanford Health Plan. “Keeping a competitive product.”

Avera responded to an interview request with an emailed statement, which said their change will only affect holders of individual plans, not small-group plans.

“We hope the discontinuation of coverage stimulates the conversation among insurance providers and regulators on how to best meet the need that exists,” the statement said.

Two bills introduced by both Democrats and Republicans will seek to remove the state’s loophole for smaller group plans. Each does the exact same thing: Cut the exemption.

Republican Rep. Sue Peterson of Sioux Falls and Democratic Rep. Ryan Cwach of Yankton introduced separate bills in the House, with Republican Sen. Brock Greenfield of Clark signing on as a co-sponsor of Peterson’s bill.

“My hope and my belief is that this is a result of Republicans and Democrats wanting to work together to find solutions for families of autistic children,” Cwach said.

Avera notified families months ahead of the change, but families on Sanford’s individual and small-group plans had their coverage yanked with little or no notice.

Avera’s statement said the provider led the industry in 2014 when it decided to cover Applied Behavior Analysis on individual plans.

“We had hoped other insurers would follow suit to offer coverage, but none did, creating a financial burden shared with our other insurance members,” the statement said.

Sanford’s coverage of the autism treatments in individual plans was a mistake, Zimmer said.

“We had mistakenly paid some claims on a small amount of individuals,” Zimmer said.

Lindsey Janklow got a letter from Sanford just a week before coverage quit on her 2-year-old son’s treatment.

R.J. lost his speech when he was about 15 months old. And then he started banging his head. Friday was his last day of coverage, and Janklow is working with a sense of urgency to do what she can to help.

She’s the one who went out and found support from Peterson, Greenfield and Cwach.

The Sioux Falls mother is worried about her young son losing access to Applied Behavior Analysis during a critical point in his development, when his young mind can be healed with effective treatment.

“I’ve probably been in a shocked denial,” Janklow said. “It’s at the age where it really makes the biggest effect.”

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Information from: Argus Leader, http://www.argusleader.com

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