South Dakota children still without autism treatments? Parents say their work isn't done

Intensive autism therapy gave Darcy Weber the gift of being able to speak with her young son.

Then the treatments stopped. Therapy for 4-year-old Easton was lost in a loophole for health care insurers in South Dakota, who ended his coverage in January.

Easton is still going untreated.

“I have a hard time with it because I fought so hard this past year to get coverage for it, for my son and all these other kids,” Weber said. “And he still doesn’t get coverage, and that devastates me.”

More:Insurance coverage for autism treatment restored in deal between Gov. Kristi Noem, Sanford and Avera

Despite a recent announcement that insurance might be restored in 2020 for children who need an expensive form of autism therapy called Applied Behavior Analysis, Weber doesn't think her family will qualify.

Parents who lost ABA autism treatments for their children earlier this year are still without options, even after Gov. Kristi Noem's office commended two Sioux Falls-based insurers Friday for planning to add coverage for the therapy in 2020.

The insurance arms of both Sanford and Avera will offer ABA coverage starting in January, but the plans won't be available on Healthcare.gov through the exchange established by the Affordable Care Act.

A representative for Noem said the governor is pleased the Sioux Falls-based insurers will provide more coverage for children with autism.

“Unfortunately, the exchange was not an option for these plans,” spokeswoman Kristin Wileman said in a written statement.

Representatives for both health care systems said they missed the deadline to put the 2020 plans on the federal exchange. 

Parents such as Lindsey Janklow, who first voiced concerns and brought the matter to South Dakota lawmakers in January, are still struggling to find help for their children. Behavioral interventions for a child with autism cost as much as buying a new car each year, roughly $40,000 to $60,000 a year, according to the Centers for Disease Control.

Janklow said she’s been paying for her 3-year-old son R.J.’s ABA therapy directly since Sanford ended his coverage in January.

Sanford Health Plan cut ABA coverage for R.J. and a number of children with autism in January, saying it had never intended to include the treatment in any of its plans.

“We got that letter and then I wrote a letter to Sanford asking for an appeal,” Janklow said. “They said there was no appeal process for this.”

Earlier:After losing autism treatments, 3 moms create nonprofit to help families

Avera had been covering ABA but also pulled coverage from its health plans in January, 2019, due to financial risks.

Unlike states that have broader mandates, South Dakota's loophole is still being used by insurers. Janklow uses Wellmark Blue Cross Blue Shield policy for her son R.J.’s health care through her employer and said she won't be able to get ABA coverage next year.

Weber, a trained ABA therapist herself, continues to work with her son Easton, but she can’t offer him the same level of treatment as a third-party provider. Her family is loyal to Avera Health Plan, but she’s not sure if they’ll be able to afford the off-exchange plan Avera will offer for 2020.

“He’s basically going to go two years without ABA, and we’ve basically missed the window for his early intervention,” Weber said. “He would have been one of the kids who had the best outcome.”

Why some children still aren't covered

Noem’s administration, through the state Division of Insurance, lobbied against a bill that would have closed the loophole for individual and small group insurance plans.

The proposal, supported by parents such as Weber and Janklow, failed during the legislative session earlier this year. Instead of supporting the bill, dubbed by the opposition as a “mandate” for insurers, state officials included ABA in new benchmarks for its 2021 Essential Health Benefits plan.

It won’t take effect for more than a year, but ABA coverage will eventually be added to Healthcare.gov plans in 2021 when the new benchmarks take effect.

Meanwhile, Avera and Sanford’s decision to provide off-exchange plans in 2020 is a “positive development” for families that need coverage, Wileman said in her statement.

Meanwhile, states such as North Dakota have passed directives requiring health insurers to include ABA in all plans, including those offered on the federal exchange. Insurance officials in Tennessee are the latest to issue such a rule, saying ABA coverage is required under the federal Mental Health Parity act passed in 2008. The federal law requires that mental health conditions be treated with the same level of care as physical health conditions.

Janklow would have liked to see Noem’s office do something similar, instead of just including ABA in the 2021 benchmarks, which are not permanent, she said. The benchmarks are subject to change.

“That’s the real simple fix, so I don’t know why they refused to do that,” Janklow said. “It doesn’t make a lot of sense to me.”

What's next for parents?

ABA therapy requires 30-40 hours of treatment per week, and the daily sessions have been shown to effectively improve language and comprehension skills in young children with autism who are nonverbal.

Before therapy, Easton’s vocabulary was limited and he crashed his body into objects for sensory feedback. He also liked to stray from home.

Through his sessions, Easton stopped his self-harm and stopped running away from home. He started using two-word phrases for the first time, Weber said.

“He started to actually play with other kids at his day care, and showed interest in his sister,” Weber said. “That’s something I thought I would never see.”

Going months without therapy has left its mark. Easton’s behavior has become more aggressive, Weber said.

She plans to explore her options. Otherwise, all she can do is wait.