More Diagnoses, More Demand

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At 4 years old, Journi Christianson could say three words: daddy, cat, and—just barely—mama. 

She still drank exclusively out of a bottle, had difficulty walking, and would grow so frustrated with her inability to communicate that she would often become violent. Her mother, Danyelle DeRose, said they avoided trips to places like Walmart. “I just couldn’t do it because people didn’t understand her noises,” she said. 

At first, DeRose said she was in “complete denial.” But as her daughter’s developmental differences started becoming more evident around age 2, Journi was diagnosed with level 3 nonverbal autism, the highest tier of classification.

DeRose and her husband struggled through two years of red tape, more than six different doctors and therapists, and several thousand dollars in out-of-pocket expenses. She said providers told them Journi would never talk, attend traditional school, or lead a typical life. 

But to DeRose’s relief, they may be wrong.

In June, Journi began attending the behavioral health clinic CompleatKidz in Belmont, which is outside of Charlotte. She receives six hours of daily Applied Behavior Analysis therapy, a research-proven approach primarily used to minimize harmful behaviors and build positive patterns in individuals with autism.

Journi’s transformation has been, in her mother’s eyes, miraculous. 

“She can talk now. She can brush her own hair. She can say 20 words by herself,” DeRose said. “If you would have met her a year ago, you wouldn’t even believe she’s the same child.”

Journi qualifies for the therapy through Medicaid, the public health insurance program for low-income people funded by state and federal dollars.

Her husband, James Christianson, quit his job to navigate Journi’s medical needs. It also sent the family into credit card debt, caused tension in their marriage, and forced them to downsize from a three-bedroom house with a fenced-in backyard to a mobile home.

Without Medicaid, they wouldn’t be able to afford the care that’s helping their daughter thrive. 

But the stability of that care was thrown into limbo as lawmakers and state health officials spar over funding the program, which has created uncertainty and anxiety for those who depend on it. 

The thought of a funding crisis potentially taking these services away from her daughter “makes me physically ill,” DeRose said. 

The General Assembly was supposed to pass its biennial budget by July 1, but because lawmakers can’t agree on various projects unrelated to Medicaid, the program is facing a $319 million shortfall. To avoid insolvency, on October 1 the state health department imposed reductions in fees paid to providers of various Medicaid services, including a 10% reduction in payments for the type of therapy Journi receives. 

State health officials targeted Applied Behavior Analysis, often called ABA, in part because of ballooning costs as more children access the therapy and receive additional hours of care.

To reckon with the cuts, CompleatKidz has been forced to consider eliminating 100 staff positions across its 24 facilities, reducing average weekly therapy hours for each child, scrapping plans to open new clinics, and extending timelines for the more than 1,000 children across the state currently on its waitlist.

A recent court ruling means these clinics can put their contingency plans on hold. Families of 22 children with autism sued the N.C. Department of Health and Human Services, which oversees Medicaid, over the rate cuts, alleging discrimination on the basis of disability. (DeRose was not a party to the suit, but CompleatKidz participated in filings to support the families’ case.) 

Last month, a court order reversed the cuts for ABA therapy; reductions of 3 to 10% remain in effect for dozens of other Medicaid services.

While autism advocates are grateful for the legal victory, the tussle highlights fiscal and philosophical questions at the heart of the evolving understanding of the diagnosis. As demand for autism services has grown, costs to the state have exploded, putting pressure on policymakers to rein in spending. 

Medicaid is the state’s second-highest expense, behind education. Last fiscal year, the program spent $35.8 billion providing care to 3.1 million low-income people, with federal funds covering about 70% percent of the cost. This fiscal year, ABA providers are projected to receive $657 million from the program—more than five times as much as 2022—making up 3.4% percent of the money Medicaid spends on providers. 

ABA therapy payments through Medicaid will remain frozen at their previous rates until a trial, which hasn’t been scheduled. The state says Medicaid will run out of money in April.

CompleatKidz CEO Adi Khindaria told The Assembly the court order has allowed its clinics, which serve 9,000 children in North Carolina, to maintain current service levels. Still, he said “we’ll need clarity on the final outcome before making major operational commitments.” 

An Evolving Understanding

The public and academic understanding of autism has evolved since the condition was first classified in the early 20th century to describe a group of developmental, behavioral, and social difficulties. Autism diagnoses have soared since then, and include a widened spectrum, from largely nonverbal people like Journi was before receiving ABA therapy, to those with minimal support needs, like Elon Musk, the richest man in the world. 

“What autism was considered to be in the 1990s and what autism is considered to be now are very different,” said David Laxton, spokesman for the Autism Society of North Carolina.

In recent months, the diagnosis has been the subject of fraught medical and political debates. In September, President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. pledged $50 million to study its causes; they have claimed the disorder is linked to vaccines and, most recently, prenatal consumption of Tylenol. 

“What autism was considered to be in the 1990s and what autism is considered to be now are very different.”

David Laxton, Autism Society of North Carolina

Most scientists, however, say there is no single agreed-upon cause, and it is likely influenced by a complex blend of genetic and prenatal risk factors and, potentially, pollution and certain chemicals.

“It’s been a busy few months,” Laxton said. “Not everybody is speaking the truth.”

There is an ongoing debate whether the increased diagnosis is due to environmental factors, expanded diagnostic services, and increased public awareness, or some combination of the three. 

Medicaid claims data show the rate of children enrolled in the program and receiving care for autism in North Carolina swelled from 1 in 294 in 2000 to 1 in 61 as of 2022. (The prevalence of autism in the state’s overall population of children under age 8—not just those who receive Medicaid—is less clear. An oft-cited estimate from the Centers for Disease Control and Prevention suggests it could be 1 in 39, based on 2016 data.) 

As diagnoses have expanded, so has the need for services. 

Following federal guidance, North Carolina Medicaid added ABA as a covered service in 2014. The State Health Plan followed suit the next year, and the General Assembly required private health insurers to cover up to $40,000 in autism-related treatment for children every year.

ABA therapy is repetition-based and most often administered one-on-one. It helps learners master life skills like tying shoes, washing hands, and using the bathroom. 

“When you practice a skill over and over, it becomes habit,” said Ruchi Patel, a board-certified behavior analyst for CompleatKidz in Burlington. 

Early intervention is vital. Children’s brains “are like sponges,” Patel said. But parents often wait excruciating months before receiving care, as a critical development window passes. “Any amount of time that you’re not receiving therapy is time that you’re wasting.”

Patel estimates 90% of the people who come to her Burlington clinic rely on Medicaid. “Every kid deserves the chance to thrive, not just the families that can afford it or can afford private insurance,” she said.

Nearly all spending on what Medicaid categorizes as research-based behavioral health therapy goes toward ABA. Between the 2022 and 2024 fiscal years, the number of children receiving services in this category more than doubled, to more than 8,700. The program spent an average of $37,800 on each child last year, according to The Assembly’s calculation based on state records. Medicaid covers the entire bill for covered services to members under 21, and adults pay a maximum $4 copay for some services. 

Expenses are accelerating faster than the number of children served, indicating those children are getting more hours of services. This is, apparently, a red flag for state health officials. 

Two weeks after the Medicaid rate cuts took effect, the state Department of Health and Human Services published a range of policy recommendations to cut back on ABA spending, listing the therapy as among those straining its Medicaid budget. 

“The fact that more autistic kids are getting care is not a basis to just turn around and say, ‘Okay, let’s cut the care.’”

Michael Easley Jr., attorney representing families of children with autism

The report cited concerns about “excessive utilization” of the therapy and the potential for low-quality service delivery. It also pointed to investigations that uncovered misuse in other states, and suggested several rule changes for North Carolina to curb costs, including strengthening requirements for individualized plans and providers and establishing an off-ramp for children when progress is apparent. Five providers are driving the bulk of the increase, according to the report.

“The available data raise concerns about the service mix, intensity and consistency of the services being provided by some providers and whether children and youth are consistently receiving services that are individualized to their clinical needs,” the policy paper states.

Michael Easley Jr., who represented the families of children with autism in the lawsuit against the state health department, said the state’s skepticism of ABA spending is misguided.

“The fact that more autistic kids are getting care is not a basis to just turn around and say, ‘Okay, let’s cut the care,’” Easley said. 

In his first case in the private sector following a four-year tenure as the Eastern District’s U.S. Attorney, Easley said the state was effectively discriminating against people with disabilities. Under state and federal law, people with disabilities are considered a protected class. Other Medicaid cuts like those to hospitals (subject to a 10% slash in reimbursement fees) or chiropractors and podiatrists *subject to a 3% decrease), affect both able-bodied and disabled patients.

It’s also a longer-term financial miscalculation, Easley said, if children with autism aren’t able to develop life skills through those services. “Rather than being independent and employed and taxpayers and members of their community, in a broader sense, you’ve created a class of people who are isolated, who are institutionalized, and who ultimately are dependent on the state.”

In a court filing, CompleatKidz CEO Khindaria was critical of the state’s plan to redirect children to less expensive alternative services. 

While other services are important, “they are not a replacement for ABA therapy,” Khindaria wrote. 

For Journi, 90-minute speech and occupational therapy sessions twice a week proved inadequate. “We would have to carry her, kind of like a hog-tie, to get her into the building because she hated it,” DeRose said. “It was a complete disaster.”

In a court filing, health department Chief Financial Officer Adam Levinson argued that any reversal of its cuts to ABA therapy would “imperil the solvency” of Medicaid. The program would be forced to identify more dramatic cuts elsewhere to make up the difference, Levinson said, and reduce reimbursements for other providers by $49 million.

Summer Tonizzo, a spokesperson for the health department, did not answer questions but shared a statement initially issued after the court’s rate reversal order. The decision makes the General Assembly’s need to fund Medicaid “even more urgent,” Tonizzo said, adding that funds could now run out sooner than expected—potentially as early as April. 

Gov. Josh Stein attempted to call lawmakers back to Raleigh for a special session on November 13, a rare move that didn’t persuade either Republican-led chamber to show up. Both Republican leaders and the governor have accused one another of manufacturing a crisis for political gain. 

In his ruling on the ABA cuts earlier, Special Superior Court Judge Clayton D. Somers said the issue boils down to a lack of “trust” that the legislature will pass a budget before Medicaid runs out of money. 

‘A Huge Supply-Demand Problem’

A lack of trust is also manifesting between the Stein administration and ABA providers. 

In legal filings, state health department leaders described ABA providers’ warnings of imminent staff and service hour cuts as “self-serving” and unlikely.

The sharp posturing contrasts with the state’s warm announcement just two years ago that it would increase reimbursement rates for behavioral health providers for the first time in a decade, calling the old rates “inadequate.”

Easley said the industry is still nascent since it’s only been a decade since insurance companies began covering the therapy. “There’s a huge supply-demand problem,” he said. 

“Kids are being diagnosed at a higher rate than people are being certified to treat them.”

Ruchi Patel, behavior analyst

Alongside autism diagnoses, the state’s workforce credentialed to administer ABA therapy has risen sharply, from 214 a decade ago to 7,923 last year, according to Behavior Analyst Certification Board data. That still hasn’t been enough to meet increased demand.

“Kids are being diagnosed at a higher rate than people are being certified to treat them,” said Patel, the behavior analyst at CompleatKidz.

Legislation passed in 2021 removed a requirement that board-certified behavior analysts be supervised by a psychologist, which advocates argued had been burdensome and unique to North Carolina. The law also created a state licensure board to oversee the growing field, and began accepting applications in 2023.

Job listings for behavior analysts increased 77% between 2023 and 2024, according to a labor market review by the Behavior Analyst Certification Board, with 4,228 openings listed. Still, waitlists for services abound. 

Training and retention for providers is already difficult. “This is a really high burnout field, because you’re working one-on-one, sometimes you’re dealing with a lot of aggression,” she said, “It’s a mentally taxing field.”

Technicians, who work under the guidance of behavior analysts and carry out much of the day-to-day work, earn between $17 and $20.50 an hour at CompleatKidz.

Laxton, the Autism Society of North Carolina spokesman, is worried the rate cuts will scare people away from an already strained workforce. “They could go somewhere else and make more money,” he said. 

The state health department has some rulemaking authority independent of the legislature, and is accepting comments on its suggested changes to reduce ABA spending through November 27. 

Laxton said some of the suggestions are a good starting point to increase accountability and to ensure plans are individualized. Khindaria of CompleatKidz also supports some of the state’s suggestions to enhance quality, but said many others risk “straining the system, overcomplicating service delivery, and blocking access to care—especially in rural and underserved communities, where families face some of the longest waitlists in the state.”

While the cuts to ABA therapy were reversed, reduced payments for other autism services remain in effect. Laxton said providers are evaluating whether to continue offering those services while they wait on lawmakers to act. 

“A lot of things can be impacted negatively by the inaction,” Laxton said. “We’ve always looked at it as we’re investing in these things because it saves us money.”

What the state spends to serve 4-year-old Journi will likely wind down in the years ahead; her teachers expect her to attend a mainstream public school when she enters kindergarten next year. 

In the meantime, DeRose and her husband are celebrating the small milestones, like trick-or-treating this year without worrying as much about her tendency to run away. 

After a recent tough day at work, DeRose made Journi her favorite meal—chicken nuggets and french fries. “She looked dead at me, and she said, ‘I love you, Mommy,’” DeRose said, her voice cracking. “I waited so long to hear that.”