Providers, families say Medicaid rate cuts hurt autism services

Chris Szydelko said his youngest son who has autism, Liam, used to keep to himself. He would line up his toy cars on his own and didn’t want to hold either of his parents’ hands.

Applied behavior analysis therapy, better known as ABA, changed that. It’s where children with autism, like Liam, can learn communication, life skills and how to regulate their emotions.

“He was non-verbal. He didn't like any physical contact from even myself or mom. If you can imagine your child not even wanting to hold your hand, it was difficult,” said Szydelko, who lives in Lincoln. “Within the first week, he was running with joy to me when I went to go pick him up, screaming ‘Dad’ and giving me a big hug, saying he loves me. I mean, night and day difference.”

After seeing how ABA helped his son, Szydelko said he dove into learning more about autism and how to make a difference. He’s written books about it, including a children’s book. Szydelko also has a company helping families create packages with ID cards and information on their children to aid first responders in emergencies.

Liam, now 6 years old, recently graduated from his ABA program. Szydelko said his son will be spared from the impacts of recent Medicaid rate cuts to ABA services in Nebraska, but he is worried for other children and families who need those services.

“I thought about it for a moment. It's like, ‘Yeah, he's going to graduate. Why do I need to care?’ Then it's like, what if he was just starting,” Szydelko said. “I would want someone else to stick up for him.”

In August, Nebraska Department of Health and Human Services officials decreased what they pay providers for ABA therapy under Medicaid. The state used to pay $36.11 per 15 minutes of ABA therapy. Now, it pays $18.70 for treatment from a registered behavior technician (RBT) and $22.72 for a board certified behavior analyst (BCBA) — a 48% decrease and 37% decrease respectively.

The Nebraska legislature’s Health and Human Services committee will conduct a legislative study on ABA services in Nebraska. Members are holding a hearing on Friday at 9 a.m. at the state Capitol. Only certain speakers were invited to testify, but anyone can watch the hearing.

Drew Gonshorowski, director of Medicaid and long-term care for the Department of Health and Human Services, said department officials started discussing Medicaid rates for ABA before he started in December. Along with the rate adjustments that started last month, the department also introduced new ABA definitions that included service limits of 30 hours per week for a child and added a requirement for providers to meet with parents at least two hours a month.

“This rate adjustment that went into effect on Aug. 1 is reflective of a pretty holistic, and I would call it a careful, approach, on making sure the rates are competitive with the rest of the country but still above national averages,” Gonshorowski said. “That's the reality still is we're still, and I believe that DHHS’s belief on this, too, is that we are competitive and we are above national averages.”

In 2020, the state paid $4.6 million for ABA services for 169 families. In 2024, it paid $85 million for more than 1,500 families. Compared to the rest of the country, including nearby states like Colorado and Kansas, Nebraska had some of the highest Medicaid rates for ABA.

“That sort of growth is usually indicative of a service that is just unsustainable,” Gonshorowski said. “These changes, along with the Medicaid service definitions changes that we pushed at the beginning of the year, are meant to ensure that this service is available for Nebraskan families, not just now, but well into the future.”

Gonshorowski said he wants to make sure Nebraskans know the health department is not cutting ABA services.

Mariel Fernandez, vice president of government affairs for the Council of Autism Service Providers, said CASP representatives understand why the state decreased the Medicaid rates, but they are concerned how the abrupt change will ultimately impact care.

“I think everybody understands that those rates needed to be adjusted,” Fernandez said. “It's just, they were adjusted so much that it now creates significant concern for how are we going to be able to maintain our employees? How are we going to be able to cover our overhead? How are we going to be able to continue to fulfill our mission and serve these families and not risk bankruptcy?”

Fernandez added that it didn’t seem like DHHS explored all the costs for ABA services specifically in Nebraska, like how salaries compare to other states.

She said she’s also concerned Nebraska isn’t fulfilling three federal regulations with these rate changes:

• Early and Periodic Screening, Diagnostic and Treatment is a Medicaid requirement that ensures people receive access to care without delay and with reasonable promptness.
• The Mental Health Parity and Addiction Equity Act says processes to establish rates for mental health services must be the same as those for medical and surgical services.
• The Social Security Act outlines that rates must be in line with what other states pay while continuing to promote access to care equal to what the general population can receive.

“Why should a child who has commercial insurance or a child who has TRICARE have the opportunity to learn the skills that they need to be able to give back and contribute to the state, to be the best version of themselves, but a child on Medicaid not get that opportunity,” Fernandez said.

Fernandez also said she’s heard of two or three providers planning to leave Nebraska.

“So any child being served by those programs, regardless of their payer — whether they have Medicaid or another payer — will now no longer have access to ABA,” Fernandez said. “Because there are not enough providers across the state, that means it’s more likely than not that those children won't be able to just transition to a new provider, they will go without care for a period of time.”

Themis Gomes, CEO of Behaven Kids with locations in Lincoln and Omaha, said she’s doing everything she can to keep providing care to families, even eliminating positions. Gomes said she also had staff choose to leave because of the cuts, but they didn’t leave for another provider, they are completely changing jobs.

“It breaks my heart to see some of our staff who we've taken a long time to recruit — not because we just wanted a body, but because we hand-picked some of these staff — completely leave the industry,” Gomes said. “It is heartbreaking to see, because if we don't have good people, if we don't have real talent, how are we going to be doing this more effectively?”

She said along with the cuts, the new state regulations are making it challenging to operate. Gomes said the 30-hour limit for ABA therapy makes it hard to hire since people typically want to work 40 hours a week. Gomes said the state also changed systems and templates, meaning they have to retrain people on the new procedures.

“Add that with the rate changes, it becomes extremely, extremely hard to operate, and that generates a lot of tension and stress, especially to the employees,” Gomes said.

In Hastings, Carley Starling leads the only ABA therapy program in the area for high-frequency and high-intensity behavior. She is CEO and founder of Wabi Sabi Behavioral Health Center, which serves about 20 kids with ABA services.

Starling said she doesn’t want to worry families or stop seeing them, but the Medicaid rate cuts might mean that she has to make some hard decisions. She’s been able to keep services going for the last month because of the other side of her business, Summit Academy, which helps school-aged students who need additional behavioral support.

“Unfortunately, it's come to a point where I'm not going to be able to pay my staff, and we can't do that either,” Starling said. “We have a couple of families that are aware that this could be coming down the pike, as far as us not taking Medicaid anymore, and they have reached out to their senators and had conversations. They're extremely concerned, because there is no one else that they have reached out to that has been helpful to them and their child when it comes to their behavior.”

Starling said she believes there should be conversations about ABA in Nebraska and across the country.

“I am all for sitting at the table, because long-term sustainability is important across the board,” Starling said. “Unfortunately, providers were not invited to the table to have those conversations and talk about how we could do this in a sustainable way.”

Starling said the higher Medicaid rates made up for other differences in the way Nebraska codes ABA services compared to other states. For example, in Minnesota, providers can bill additional codes that cover if a child is in crisis and more staff need to step in to help. Starling said Nebraska providers don’t have a way to get paid in those scenarios.

“With our ABA kids, at this point, we won't get reimbursed for that,” Starling said. “We don't get paid for that. We are still going to do it, because that's the type of care, the quality of care that we want to provide.”

Kathleen Stengel, a board certified behavior analyst who has worked in the ABA and pediatrics therapy spaces, has provided ABA therapy in many states, including Texas, Colorado and currently Pennsylvania. She said stabilizing Medicaid rates is good for the long term, but she was concerned when Nebraska officials cut the rates with only a month's notice.

“I have never seen that in my career,” Stengel said. “Now, that does not mean it doesn't happen in other fields. I know sometimes in psychiatric fields they do abrupt rate cuts, but usually that's as a result of either legislation, but you know the legislation is coming, and then full-blown implementation. It's kind of rare that Medicaid does cuts without having some type of staggered approach.”

She said many states start with high rates to attract providers, BCBAs and RBTs to build up a network for ABA therapy. Then, over time, they balance those rates out.

In 2024, there were 1,863 board certified behavior analysts, assistants and registered behavior technicians certified in Nebraska. This was up from 2020, when the state had 459.

However, Stengel said not everyone who is certified is actively practicing. She added that the new people being certified also need time to get experience to provide quality care.

“That means they haven't had exposure to the number of things that could possibly occur in a child's life, especially early on in the development, so they need to have mentorship models of seasoned professionals,” Stengel said.

With the rate reductions in Nebraska, Stengel said she could see providers in other states taking Nebraska BCBAs and RBTs to fill their employment needs, especially because Nebraska providers may have to cut pay to make up the lost money from Medicaid.

“Where do you think those costs are going to get cut? It's not going to be operations,” Stengel said. “It's going to be reducing salary of the BCBAs who are there, which means that they can go to neighboring states and provide it for a lot more.”

Starling, the provider in Hastings, said she doesn’t want to see Nebraska families lose access to ABA.

“I opened this clinic because our own daughter had this type of severe behavior when she was little, and we didn't have that support,” Starling said. “I wanted to make sure families around here had access to a clinic that could support them in the way that would give them hope.”

She said she hasn’t been able to find a higher level of care in Nebraska to serve kids with severe autism, and she’s been asking DHHS for options to help these families in case she can no longer be that provider.

“We really have to consider what we're paying for, right? I mean, I have staff get hit, kicked, bit, spit on — all of that kind of stuff all day long,” Starling said. “It is mentally tolling. It is physically tolling, and my staff have a passion for doing that. What is that cost? What is that worth to our state, of taking care of our kids and making sure that they have what they need, so that they're not doing those types of things long term. How do you put a price tag on it?”

Szydelko in Lincoln said he’s seen how ABA therapy has helped not only his son Liam, but his family as well. Liam will spend time with his three older siblings, which was something he wouldn’t do before ABA.

“We have a picture from the Omaha Children's Museum when [Autism Action Partnership], the autism nonprofit out there, put it on,” Szydelko said. “We went out there, and we have a video on his Facebook page where him and his oldest brother were playing the piano together.”

Szydelko said his son’s provider has made it clear it will do whatever it takes to keep serving kids, but he hopes the state will talk with providers and families to come up with a better solution for all.

“Reach back out to me in an email, call my phone number, go to my website, autismsupportunit.com, and look up the phone number,” he said. “Get in contact with me, and I'll help you make the correct changes. But stop hurting these families. These kids don't deserve that.”