ALEXANDER, N.C. — Aubrey Osborne has a new best friend.
Dressed in blue with a large ribbon in her blonde curls, the three-year-old sat on her mother's lap and carefully said her classmate's name after hearing the words “best friend.” Just a few months ago, Gail Osborne didn't expect her adopted daughter to make friends at school.
Diagnosed with autism at 14 months, Aubrey Osborne this year began struggling to control her temper tantrums and sometimes self-harming. Due to her problems with social interaction, her family was reluctant to appear in public.
But this summer they began using behavior analysis therapy, commonly called ABA, which is often used to help people diagnosed with autism improve social interaction and communication. A technician comes to the family's home five days a week to work with Aubrey.
Since then, she started kindergarten, began eating more regularly, succeeded in toilet training, quietly went grocery shopping with her mother, and made herself a best friend. Everything for the first time.
“That’s what ABA gives us: moments of normalcy,” Gail Osborne said.
But in October, Aubrey's weekly therapy hours were sharply cut in half from 30 to 15, a byproduct of her state's efforts to cut Medicaid costs.
Other families across the country have also recently struggled with access to treatment as government officials sharply cut Medicaid, the government-run health insurance that covers people with low incomes and disabilities. North Carolina attempted to cut payments to ABA providers by 10%. Nebraska has cut payments to some ABA providers by nearly 50%. Benefit cuts are also being considered in Colorado and Indiana, among other states.
The scale-down efforts come as state Medicaid programs have increased spending on autism treatment in recent years. Therapy payments in North Carolina, which totaled $122 million in fiscal year 2022, projected to reach $639 million. growth of 423% in fiscal year 2026. In Nebraska, spending has increased 1,700% in recent years. Indiana saw a 2,800% increase.
Increased awareness and diagnosis of autism means more families are seeking treatment for their children, which can range from 10 to 40 hours a week, according to Mariel Fernandez, vice president of government affairs at the Mariel Fernandez Center for Public Affairs. Autism Provider Council. Treatment is intensive: Holistic therapy may involve 30-40 hours of direct treatment per week, while more focused therapy may still consist of 10-25 hours per week. according to recommendations issued by the council.
It is also a relatively recent Medicaid coverage area. Federal government ordered the states to cover treatments for autism in 2014, but not all of them covered ABA, which Fernandez called the “gold standard”, until 2022.
State budget deficit and the looming nearly $1 trillion cut in Medicaid spending from President Donald Trump's One Big Beautiful Bill Act has prompted state budget managers to cut spending on autism therapy and other growing items in their Medicaid spending.
The same can be said about a series of state and federal audits that have raised questions about payments to some ABA providers. A federal audit Indiana's Medicaid program estimated at least $56 million in improper payments in 2019 and 2020, noting that some providers billed for overtime hours, including during sleep hours. A similar audit in Wisconsin estimated at least $18.5 million in improper payments in 2021 and 2022. In Minnesota, state officials 85 open investigations among autism service providers starting this summer, after The FBI searched two providers late last year as part of a Medicaid fraud investigation.
Families fight back
But efforts to curb therapy costs have also sparked backlash from the families who depend on it.
In North Carolina, the families of 21 children with autism filed a lawsuit challenging a 10 percent cut in payments to health care providers. In Colorado, a group of service providers and parents sue the state because of its decision to require prior authorization and lower reimbursement rates for therapy.
And in Nebraska, families and advocates say the state's sweeping cuts — ranging from 28% to 79%, depending on the service — could threaten their access to treatment.
“They're scared because they had that access, their kids were very successful, and now the rug is being pulled out from under them,” said Kathy Martinez, the organization's president. Autism Family Networka nonprofit organization in Lincoln, Nebraska that supports autistic people and their families.
Martinez spent years advocating for Nebraska to mandate ABA therapy coverage after her family went bankrupt paying out of pocket for her son Jake's treatment. He was diagnosed with autism in 2005 when he was 2 years old and began ABA therapy in 2006, which Martinez said helped him learn to read, write, use assistive communication devices and use the toilet.
To pay for the $60,000-a-year treatment, Martinez said her family borrowed money from a relative and took out a second mortgage before ultimately filing for bankruptcy.
“I was very angry that my family had to file for bankruptcy to provide our son with something that every doctor he saw recommended,” Martinez said. “No family should have to choose between bankruptcy and helping their child.”
In 2014, Nebraska mandated insurance coverage for autism-related services. Now Martinez worries that the state's rate cuts could encourage providers to drop services, limiting the access she has fought so hard for.
Her fears were confirmed in late September when Beyond and Beyond Therapy, one of Nebraska's largest providers of ABA services, notified families that it planned to end its participation in Nebraska's Medicaid program, citing reduced provider rates.
The Beyond and Beyond website advertises services in at least eight states. The company received more than $28.5 million from Nebraska's Medicaid managed care program in 2024, according to the company. state audit. This accounted for about a third of the program's total therapy spending that year and four times that of the next largest provider. CEO Matt Rockowski did not respond to multiple interview requests.
A week after announcing it would end Nebraska's Medicaid program, the company reversed course, citing an “overwhelming influx of calls, emails and heartfelt messages” in a letter to families.
Danielle Westman, whose 15-year-old son Caleb receives 10 hours of in-home ABA services a week from Beyond and Beyond, was relieved by the announcement. Caleb is semi-verbal and has a history of being separated from his caregivers.
“I won’t go to any other company,” Westman said. “A lot of other ABA companies want us to go to the center during normal business hours. My son is very restless, very anxious, so being at home in his safe zone has been amazing.”
Nebraska officials they said The state previously had the highest Medicaid reimbursement rates for ABA in the country, and that the new rates continue to compare favorably with those in neighboring states. but will provide services are “affordable and sustainable into the future.”
States are struggling with high costs
State Medicaid Director Drew Gonsorowski said his agency was closely monitoring the impact. Deputy Director Matthew Ahern said that while no ABA providers left the state after the cuts, one provider stopped accepting Medicaid payments for therapy. New providers also have emerged in Nebraska after officials announced cuts.
One ABA provider in Nebraska even welcomed the rate reduction. Corey Kors, CEO Radical Mindswhich has seven offices in the Omaha area, criticized what some ABA providers see as an excessive focus on providing a total of 40 hours of services per child per week. He compared it to giving chemotherapy to every cancer patient, regardless of severity, because it is the most expensive.
“As a result, you will be able to make more money per patient and not have to use the clinical decision-making process to determine the right path,” Kors said.
Nebraska delivered limit 30 hours per week for services without additional scrutiny, and the new rates are acceptable to providers, Kors said, as long as their business model is not overly based on high Medicaid rates.
In North Carolina, Aubrey Osborne's ABA services were restored, thanks in large part to the persistence of her mother, who called every person in the state's Medicaid system to make the case for her daughter's care.
And for now, Gail Osborne won't have to worry about legislative squabbles over her daughter's care. In early December, North Carolina Gov. Josh Stein reversed all Medicaid cuts enacted in October, citing lawsuits like the one filed by families of children with autism.
“DHHS can read the writing on the wall” Stein saidannouncing the reversal of the state health department's decision. “Here's what has changed. Here's what hasn't changed. Medicaid still doesn't have enough money to get us through the rest of the budget year.”
Osborne is the executive director of the Foster Family Alliance, a prominent foster care advocacy organization in the state, and has taught special education for nearly 20 years. Despite her experience, she didn't know how to help Aubrey improve her social standing. She was initially skeptical of ABA, but now sees it as a bridge to her daughter's well-being.
“It’s not ideal,” Osborne said. “But growth in less than a year is simply unrealistic.”
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