NC families fear losing access to autism therapy as new rules take effect

By Jennifer Fernandez

Before getting therapy, Abril Chavez Diaz’s 5-year-old autistic son, Angel, would have meltdowns that lasted for an hour, she said.

He has made a lot of progress since he’s started with applied behavior analysis therapy, she told supporters and lawmakers at a June 19 event at the facility of ABA provider Therapy Smarts in Chapel Hill.

“Those meltdowns are up to five minutes and then he can regulate himself, which I think is very important because once he’s finished with ABA, he’s gonna go back to school,” she said at the event that promoted ABA, a therapeutic regimen primarily used for children with autism. 

Parents of autistic children and local providers were there to share concerns about pending changes to ABA therapy in North Carolina. They’re worried that children will lose access to care, which could impede their progress.

The General Assembly passed a bill in April that curtailed the use of remote supervision and out-of-state therapists. The legislation was in response to soaring costs for autism therapy in the state and concerns about potential fraud.

The bill, House Bill 696, which focused on funding the state’s Medicaid program, also requires patients getting more than 16 hours of ABA therapy per week to get reauthorizations more often. That and some other changes will become effective Aug. 1. 

State and federal Medicaid spending on ABA in North Carolina increased from $1.9 million in 2020 to $505 million in the fiscal year that ended in 2025, state data shows. By next year, the N.C. Department of Health and Human Services estimated, the annual cost would top $1 billion. 

The increase in the amount of therapy far outpaced the increase in autism diagnoses and cannot “be explained by increased access alone,” according to a presentation to lawmakers by NC DHHS Secretary Devdutta Sangvai earlier this year. 

An NC Health News analysis of state data showed that some providers that are backed by private equity were among the businesses that collected the state’s largest Medicaid payments for ABA in 2025. 

N.C. Attorney General Jeff Jackson said in April his office is investigating.

“Accountability is good,” Han-Leong Goh, a board-certified doctoral level behavior analyst since 2001, told NC Health News. “It’s just the way you go about making those changes, and the timing of it, and the intensity of it. I think all those matter.” 

Reauthorization change

Families and providers hoped lawmakers would address their concerns in the state budget. However, the budget approved July 2 and signed on July 7 by Gov. Josh Stein only tweaked one aspect of the original bill that some providers said offers a little relief.

They’re waiting on NC DHHS to update the policy to reflect those changes.

They may get some clarity soon. NC DHHS is evaluating the effects of the new legislation and working with staff to “implement the changes in a timely manner,” a department spokeswoman told NC Health News in an email on Monday.

“The policy has been revised to reflect the recent changes and will be posted in the coming days,” she wrote.

House Bill 696, the law passed in April, called for increasing treatment reauthorizations from every six months to every month for anyone receiving more than 16 hours of ABA therapy each week. 

Providers argued that was too onerous. Each reauthorization requires a report that can be 50 pages long and can take weeks to put together. Therapists would be spending more time writing reports than working with patients, and monthly reports would show little progress, they said at the June Therapy Smarts meeting.

Lawmakers, responding to concerns from parents and providers, changed the requirement to every three months, something that was noted in the budget bill.

Goh said that, while not ideal, he believes that is better than every month. 

Selene Johnson, executive director of ABC of NC, a nonprofit autism services provider based in Winston-Salem, is worried about how the state will handle the increased workload.

“Are they really going to be able to get them done every three months?” she asked.

There are already delays with six-month reauthorizations, Goh noted.

“We want to make sure that all phases are up to speed with … minimizing discontinuity of services,” he said. “Because if you don’t get that authorization on time, companies aren’t going to work for free, and then what if there’s a two-week break?”

Autistic children struggle with disruptions to their routine, he argued.

Goh praised the state’s decision to not cut rates for therapists, as some states have done to cover Medicaid costs. He said he has heard “horror stories” of rate cuts in other states that led providers to shut down. Therapists don’t make that much money as it is, he said.

Staffing challenges

One of the biggest changes that remains in place is that board-certified behavior analysts who live in other states will no longer be able to practice in North Carolina. At the Therapy Smarts meeting last month, providers argued that this change will affect the existing workforce. 

Statewide, more than 66,000 children have autism, said Therapy Smarts founder and CEO Avani Sheh. 

More than half of the behavior analysts certified to practice in North Carolina are from other states — and countries — according to an NC Health News analysis of the latest data shared by the North Carolina Behavior Analyst Licensure Board.

There are 4,010 people certified by North Carolina’s board as behavior analysts. Of those, 1,917 live in North Carolina, state records show. There is at least one from each of the 49 other states and D.C., plus a handful of countries from Canada to England to Malta and the United Arab Emirates. 

Out-of-state therapists can still practice in North Carolina if they are within about 40 miles of their patient, according to the new requirements. But that rules out the vast majority of the out-of-state and international therapists. Only 355 of them come from South Carolina, Tennessee, Georgia and Virginia — the four states that border North Carolina.

Another 179 people are licensed in North Carolina as assistant behavior analysts. About 15 percent of those come from other states, the data shows. 

North Carolina started licensing behavior analysts in July 2023, according to Johnson, who is also chair of the state licensing board.

While several universities in the state offer programs to train behavior analysts, they aren’t churning them out fast enough, Sheh said, given that it can take six months to a year to train someone once they join a practice. 

With no transition period baked into the new rule, practices won’t even be able to train behavior analysts in time to replace those who will no longer be allowed to work in the state, Sheh said.

Telehealth’s role

Using remote board-certified behavior analysts to supervise frontline therapists is also changing.

Under House Bill 696, the law passed in April, remote supervision was reduced; behavior analysts are allowed to remotely supervise therapists no more than 50 percent of the time they are working with patients. The DHHS policy reduces that further, allowing remote supervision only up to 20 percent of therapy time.

Some providers said this change will mean longer waitlists, less clinical oversight, slower skill acquisition and increased staff turnover due to burnout. Others, like Goh, said they understand why remote supervision can be problematic. Board certified behavior analysts provide feedback and make sure the therapists working directly with patients are correctly implementing procedures from the treatment plan, he explained.

He gave an example of a child struggling to put together a puzzle. All 25 pieces are laid out on the table, and the child is shaking their head. Remove all but three of the pieces and the child starts putting the puzzle together.

“That minor difference is not a minor difference to the kid, because … he or she’s telling you, ‘Hey, I can’t do this because there’s too many [puzzle pieces],’” Goh said.

A supervisor could help the frontline therapist see what they were doing wrong — putting out too many pieces and not noticing the frustration signals the child is sending.

The abrupt reduction in remote supervision will hurt already-strained staffing, Goh said. He shared his concerns with state officials in April when the first state Medicaid policy changes were proposed. He recommended a gradual reduction to allow providers more time to find, hire and train staff.

Sheh said four of Therapy Smarts’ board certified behavior analysts are from out of state and work remotely. That means half of their children will lose access to therapy if the out-of-state restriction is in place when the law goes into effect on Aug. 1.

One of those behavior analysts, Aubrey Jones, drove to North Carolina from Florida with her 6-week-old baby to speak at the Therapy Smarts event last month. She cried as she spoke about the importance of the work and the role that remote therapy plays. She said she’s available 24/7 to therapists and clients.

Amy Woodsong, a community health worker with Piedmont Health Services, said she is worried about families being able to access services after the changes are implemented, especially the limits on teletherapy.

“A lot of these families don’t have the capacity to go to a brick and mortar, because there’s not a brick and mortar available,” said Woodsong, who helps families who have children with disabilities or developmental delays find the services that they need. 

Her organization serves several rural Piedmont Triad counties, including “places where there’s not a lot out there,” she said.

And ABA therapy is often just one piece of the treatment plan for these children, she said. If services are in multiple locations, that adds to the burden on families.

What’s next?

For state Sen. Natalie Murdock (D-Durham) and state Rep. Zack Hawkins (D-Durham), this issue is personal.

The lawmakers shared their stories at the June Therapy Smarts event.

Murdock’s cousin has a son on the autism spectrum who recently graduated with a two-year college degree in Georgia. Her cousin changed careers from engineering to education so she could better help her son. While their hard work paid off, Murdock acknowledged that her cousin also had a lot of family support. Not everyone has that, she said.

Hawkins talked about how his two young sons with autism have benefited from ABA therapy. He said he’s seen firsthand how ABA combined with speech, physical and occupational therapy can “change a child’s life.”

“Families need these services. It is not abuse, it’s not fraud, it’s not waste,” Hawkins said. “These are families that understand that, or have seen a service … they believe can help their child. Period. Full stop. 

“And so we say that to our colleagues in Raleigh, because we understand that the Medicaid bill did get a little large, but that just shows you the demand, and we have to make sure that we honor the demand as much as possible.”

They encouraged parents to keep sharing their stories and concerns with lawmakers. The General Assembly plans to meet once a month through the end of the year before returning in 2027 for what is called the long session, when a new two-year budget gets hashed out.  

“You have to be so loud that we can’t deny you all the support that you need for [the] next long session,” Murdock said.

Goh said families should document the barriers they face, their concerns and the impact on them.

“Parent testimonials speak the loudest,” he said.

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