‘ABA is an essential': Nebraska Families, providers concerned about Medicaid rate cuts for autism services

It took six years for Taisa Brumagen, a single mom of three in Lincoln, to get a proper autism diagnosis for her youngest son, who is now 10 years old. Then she was stuck waiting on more lists and tests for an additional year to get him into the therapy he needed.

With upcoming cuts to Medicaid rates for autism services in Nebraska, Brumagen said she’s worried for her own son’s access to services, along with new parents searching for those supports.

“As parents who are coming into this with a new autism diagnosis, there's not going to be services available. That's really scary,” Brumagen said. “We're just going to be left to figure it out on our own. I did that for six years before my son's diagnosis, and it's a very alone place to feel as a parent.”

Brumagen’s son is on Medicaid that covers Applied Behavior Analysis therapy, which helps children with autism learn life skills, emotional regulation and communication, among others.

Currently, the state pays providers $36.11 per 15 minutes of ABA therapy under Medicaid. With new rates in August, the state will pay $18.70 for treatment from a registered behavior technician (RBT) and $22.72 for treatment from a board certified behavior analyst (BCBA) — a 48% decrease and 37% decrease respectively.

Brumagen said she’s worried providers will stop accepting Medicaid because of these decreases in rates.

“There's no way as a single parent I can pay for these services without Medicaid for my child, and he'll probably need Medicaid as an adult or Medicare as an adult,” Brumagen said. “It's not something that is just temporary.”

Steve Corsi, CEO for the Nebraska Department of Health and Human Services, said in a press conference Friday that the new rates are based on an analysis of what other states charge, including Colorado, Kansas, Wyoming and Minnesota.

“Nebraska Medicaid rates for these services will remain competitive with surrounding states, and they will remain above national averages,” Corsi said. “We're proud of that.”

He said regulations require rates to be set in a way that is efficient, economic and encourages high-quality care.

“We are going to protect,” Corsi said. “This is an act of protecting resources so that families that need necessary care for their children, they get that care.”

Drew Gonshorowski, Medicaid and long-term care director for DHHS, said Nebraska Medicaid spent $4.6 million in 2020 on ABA services for 169 families — an average of $27,000 per family. In 2024, the state spent $85 million for more than 1,500 families — about $56,000 per family.

“This amounts to an increase of more than 2,000%,” Gonshorowski said.

Cathy Martinez, president of Autism Family Network and a member of the Advisory Committee on Developmental Disabilities, said providers may stop taking Medicaid because of the decreased rates, leaving families with fewer options and more waitlists to get their child ABA therapy. She added that many families got onto Medicaid after Gov. Jim Pillen ended the developmental disability waiting list last month.

“All these families who have been waiting and waiting for this to cover the cost of such an expensive therapy for their child, it's kind of like they just pulled the rug out from under them,” Martinez said. “And then, Medicaid slashes the rate.”

Martinez remembered a time when ABA therapy was inaccessible to many families. She said when her son was diagnosed with autism in 2005, families had to pay out-of-pocket for services — around $60,000 a year. Depending on how many hours a child needs, that amount could be upwards of almost $250,000 now.

For eight years, Martinez said she testified in front of the state legislature to get private insurance coverage mandated for ABA therapy so more families could access it. Medicaid coverage came in the following years.

“We built capacity, and now this is going to destroy capacity,” Martinez said.

Martinez said her son learned how to read and communicate with an iPad because of ABA therapy.

“ABA programs could incorporate toilet training,” Martinez said. “They could incorporate life skills, such as learning how to make your bed or tie your shoes or get dressed, brush your teeth — multiple things that kids with autism struggle with. It could be reading and writing, it could be elopement prevention techniques, and so it's crucial for the safety and the well-being and the most productive life for a child with severe autism to receive ABA therapy.”

Anahi Lara in Omaha said her 11-year-old son learned how to share his emotions and went from saying a few words to near-complete sentences because of ABA therapy. She said having access to ABA has helped both her and her son.

“ABA is an essential, not a luxury,” Lara said. “ABA services has allowed children with autism to be able to thrive and participate in the homes, and school, in the community. It's helping them gain that independence that they need. Taking it away is going to undo all those years of hard-earned progress that these children have made.”

Lara said she sat through several waitlists before her son could finally get care. The first waitlist he was on was supposed to take 15 months but ended up being two years. When he finally got to the top, her son was too old for that particular clinic. So they ended up on another waitlist.

“If my son had to be on the waitlist for 15 months before all of this was even happening, I can't even imagine how long the waitlists are going to be now,” Lara said. “I mean, are kids going to have to wait three years now to receive the services that they need?”

According to DHHS, there were 2,734 ABA therapy providers enrolled in Nebraska Medicaid in 2024, including BCBAs, RBTs and other providers. In 2020, there were only 389 enrolled.

Themis Gomes, CEO of provider Behaven Kids in Lincoln and Omaha, said there is a shortage of BCBAs, who come up with the treatment plan, in Nebraska.

According to the Behavior Analyst Certification Board, there are 317 BCBAs and 1,797 RBTs certified in Nebraska. Gomes said in order to service all the children in need of ABA therapy, the state would need 700 to 800 BCBAs.

“Imagine telling a professional that has worked a masters program, plus supervision hours, plus passed a board certified behavioral analyst job — ‘Hey, guess what? The services that you're providing, it's worth half or 40% less than it was last year, and actually -36% than it was in 2021,’” Gomes said.

She added the changes will hurt in-state providers more than those from outside the state, which have multiple revenue sources to cover certain costs.

“We do our recruiting, we do our marketing, we do our monitoring and compliance in Nebraska. We do our billing in Nebraska,” Gomes said. “We create jobs that are geared towards the Nebraska economy. We don't have any intention to go out of state.”

Gomes said she wants to expand into rural populations that have less access to ABA services than Omaha, Lincoln and other states do.

Brumagen in Lincoln said she worries her son will lose access to the services he needs to thrive. She said although her son’s provider has communicated they will continue providing the best services they can, the future is uncertain.

“We don't know what's going to happen, and that's scary,” Brumagen said. “If we've had a child consistently receiving these type of services, and then all of a sudden it stops, it's going to be very hard for us to get back on track with autistic children receiving these services.”