When Dr. Karen Fessel’s son was diagnosed on the autism spectrum in 2001, her doctors initially didn't want to label her child as autistic. “They thought the label would stigmatize him for life and ABA was not recommended for him because he was high on the spectrum,” says Fessel, who is the founder and executive director of Mental Health & Autism Insurance Project.
ABA refers to applied behavioral analytics, a treatment that aims to determine how a person diagnosed with developmental delays behaves in social situations and how they can learn and adapt for their surroundings. ABA is used for autistic children and teens with severely impaired language, self-help and play skills and can also diminish aggressive and self-stimulatory behaviors as well as self-injury.
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It’s important for advisers to keep abreast of these benefits, as data from the Center for Disease Control reveal that 1 in every 68 children in the United States will be diagnosed on the autism spectrum, more employers are covering ABA and are offering other autistic benefits in their plans.
“ABA, which is considered the standard of care provided, historically has been left out of coverage plans, but employees are now covering it,” says Lorri Unumb, vice president, state government affairs for Autism Speaks.
As a leading advocacy group for people with and families dealing with autism, Unumb and her team maintain a database of Fortune 50 companies that offer autism benefits. She estimates that at least 40% of these large corporations offer Autism benefits such as ABA, diagnostic testing, pharmaceutical coverage and speech physical and occupational therapies as well.
The database is based on companies who volunteer information of these specific benefits and that those benefits have been confirmed by the Autism Speaks team.
“We have families who contact us and say we now cover ABA. We update the database every day,” Unumb says.
Strong reception
One of those Autistic-focused companies is financial services giant JPMorgan Chase. The investment and retail bank began offering autism benefits to its 160,000 U.S. employees starting on Jan. 1, 2014 following a well-received Autism awareness event that took place inside the firm in 2013.
“It was so well received that people asked for autism coverage in the medical plan and we launched that for Jan. 1, 2014. We continue to see very happy families and employees,” says Lyn Marie Pilgrim, executive director, benefits design & strategy, JPMorgan Chase & Co.
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JPMorgan Chase provides coverage for the initial Autism diagnosis and the various types of therapies that are often prescribed for the neurobiological disorder. “That could include ABA, cognitive behavioral therapy, nutritional counseling, periodic developmental screening, individual or group family therapy, speech and occupational and physical therapy as necessary. And of course, medication management,” she says.
“All of this is predicated on medical necessities on how the condition presents itself,” says Pilgrim, who is also the parent of a child on the Autism spectrum.
JPMorgan, like other U.S. companies that have embraced ABA, shies away from the more non-traditional and non-medically-vetted “therapies” that often appeal to select parent of children with Autism. Coverage for equine therapy (horseback riding) or swimming with dolphins, for example, are not usually covered in these plans.
Unumb has developed a packet for parents of Autistic children to help them make their case to their company’s HR and benefit departments. Along with fact sheets, she provides a PowerPoint presentation that explains Autism, ABA and its benefits as well as what employers can offer in their benefit packages.
Speak up
Fessel uses the presentation when she speaks with parents and brokers about autism benefits. Employers will respond when employees speak up, she says. “The technology industry and the pharmaceutical industry have led the charge. The hospitals are behind, if you can believe that,” she says. “Families need to speak up and let their employers know that they are not providing these services.”
Unumb also visits large employers across the country to give the presentation in person. She says she has seen a change in how employers respond to these offerings.
“A lot of time I will go in, have meetings and it takes a long time, but some companies are on the cutting edge and are family-oriented. That is easy. Over the past couple of years it has been about cost. ‘Tell me what the premiums will be.’ They want the bottom line and I appreciate that,” she says.
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She adds, “Lately, the inquiry has not been about cost and efficacy. The inquiry has been about how many of the Fortune 500 companies do this?”
Unumb recalls a Fortune 100 company that had just agreed to offer autism benefits to its 1 million employees. Unumb offered to spotlight the firm’s decision on the Autism Speaks website as a forward-thinking corporation that is servicing parents of children with special needs. The company declined.
“I asked why don't you want to mention [the new benefits]? They said, ‘Honestly, our company is embarrassed that we are just now doing this.’” she says.
“They were late to the party,” she adds.
