If your child needed a treatment for a disorder, you’d probably expect your insurance company to cover it.
For parents of children with autism, coverage for Applied Behavior Analysis was anything but guaranteed. In 2015, the South Dakota legislature passed a bill requiring insurance companies cover ABA therapy. But insurance companies have now discovered a loophole in the law that’s allowing them to drop the coverage for many children with autism.
Here’s the loophole: the 2015 South Dakota law does require Applied Behavior Analysis be covered for children with autism in large insurance pools made up of 50 people or more. But it did not require that those who are part of small groups or hold individual policies get the same coverage.
Page 2 of Aba Therapy Overview
Click to read about ABA Therapy in South Dakota; Source: Department of Social Services in South Dakota
Four-year-old Easton has been thriving with Applied Behavior Analysis Therapy.
“Before he started ABA therapy at age three, he could only speak 100 words and he had lack of eye contract. He wouldn’t play with his sister. It’s a life-changing thing for him,” Darcy Weber said.
His mother, Darcy, is also a trained ABA therapist and can attest both professionally and personally to the benefits of the therapy for autism.
Weber: Anything you need under the age of six for early intervention that’s what ABA really focuses on.
Kennecke: How important is early intervention?
Weber: Very, very important. That is one of the most important things you can do with a kid on the spectrum.
But Weber recently learned her insurance company, Avera Health Plans, would no longer pay for Easton’s therapy.
“It was literally one sentence that starting in 2019, Easton will no longer be getting a service that Avera has previously covered,” Weber said.
Weber’s child isn’t alone and it’s not just her insurance company. Avera, Sanford and Wellmark have cut off children they previously covered for ABA.
Lindsey Janklow’s two-year-old son R.J. had been getting ABA for just a few months when she learned Sanford Health Plan was discontinuing coverage.
“If I moved over to North Dakota and had Sanford Health Plan, it would be covered. If I moved over to Luverne, it would be covered. So I was just really disappointed that in our state this can happen,” Janklow said.
Kirk Zimmer, President of Sanford Health Plan, told us that it was a mistake on the insurance company’s part when Janklow and others in small groups or with individual policies got coverage for ABA.
Kennecke: But Sanford Health Plan could chose to cover it for a smaller group?
Zimmer: Yes, yes we could.
Kennecke: And why don’t you?
Zimmer: It’s an efficacy in the market. I think we are looking to be price competitive with our customers and at least in South Dakota, there aren’t very many plans covering that. And so we’re not doing it for that purpose.
Several South Dakota lawmakers have now introduced a bill that would require everyone with insurance policies to be covered for the autism therapy.
“It’s proven. It’s proven to work. It’s proven to help these kids and when insurance companies talk about it costing money, it’s going to cost more money down the line if we’re not handling this right now and we’re not helping these kids right now,” Democratic Rep. Kelly Sullivan of Sioux Falls said.
Kennecke: Should it take a mandate or is it just the right thing to do?
Zimmer: Well that depends on your point of view. I can certainly understand the plight of these individuals and the care these children need, and we have to balance that with business problems we have versus the coverage we need.
11-year-old Jaxson didn’t have coverage for ABA when he was young like Weber and Janklows’s children. His mother believes he would be doing even better today if he had received the therapy.
But its benefits have still been undeniable.
“I never ever thought he would read. I never thought he would write. I never thought he would have a normal conversation and he has started to do all of those things. He’s amazed me, every day,” Nici Petrich said.
“As a behavior analyst, we have to look at what we can do to educate the community on the importance of this therapy so that the kids can get the treatment they need and that they deserve,” ABA Therapist Christi Reit said.
But ABA is expensive. After being cut off by their insurance, these moms must play a waiting game and try to figure out how to best help their children while they wait to see if lawmakers will require insurance companies give them their coverage back.
“My child is being discriminated against almost because of his autism. If something else was wrong with him, our health insurance would be covering it,” Janklow said.
Therapists say while ABA is expensive, running as much as $100,000 a year for a child with autism, it does save society money in the long run.
Children who undergo ABA are more likely to lead more independent lives and are less likely to require institutionalization as they get older.
Sanford Health Plan was the only insurance company to grant KELOLAND Investigates an interview. You can read statements from Avera Health Plans and Wellmark Blue Cross and Blue Shield below.
Avera Health Plans
Obviously there is a need here, and in 2014, Avera led the industry by stepping up to cover ABA therapy in our ACA plans. Avera was the only insurance carrier offering this benefit which caused parents to buy individual plans only for their children with autism. We had hoped other insurers would follow suit to offer coverage, but none did, creating a financial burden shared with our other insurance members. We hope the discontinuation of coverage stimulates the conversation among insurance providers and regulators on how to best meet the need that exists.
Avera Health Plans large and small group plans that are not ACA plans continue to cover autism therapy in accordance with state statute. Avera, which is a self-funded employer plan, covers autism therapy including ABA therapy for our employees. Avera Health Plans members on individual ACA plans were notified of discontinued coverage for ABA therapy during the fall of 2018.
Avera has worked and we continue to work with parents who have children with autism.
Director of Media Relations/Avera Health
Wellmark Blue Cross and Blue Shield
“Jaxson Petrich has been receiving ABA therapy paid for by the school district he has attended since April of 2016. The service has not been paid for by Wellmark and no claims have been submitted to Wellmark in the past.
Recently, the member has requested to receive ABA services at home also, which is not provided by the school district. This service is also not covered by the member’s group plan. The member’s plan is a self-funded ERISA plans which is not subject to the state autism mandate.”
A legislative committee is set to take up a bill that would include individual and small group plans for ABA coverage on February 20.
We asked Governor Kristi Noem about her stance on the subject. We received this statement from Gov. Noem’s Press Secretary, Krisin Wileman:
“We will review the text of the bill if it gets to the governor’s desk and continue to take input on the issue. Generally, insurance mandates raise the costs for all consumers and limit plan design.”
KELOLAND News will follow the progress in Pierre and we’ll let you know if the issue gets resolved.